Pulling for Denise

Merry Christmas 2011

2011-12-24T22:10:00.000-08:00

There's a Christmas song that says "it's the most wonderful time of the year." Even more so when comparing Denise from this year's Christmas card photo with the photo from the 2005 card (located here). Recovery continues, long and slow (and sometimes frustrating), but also marked with progress. Denise's titers for cocci continue to show no cause for concern, so her I.D. doctor lengthened the number of months between visits. Also, though she did go for MRI and CT scans to see if the cocci has progressed further in her brain, Denise did not have to go for a spinal tap at all in 2011! And so we hope the trend continues. Merry Christmas, and best wishes for 2012!

Skin lesions, 55th Annual Cocci Study Group

2011-04-03T21:57:00.000-07:00

I'm glad that Denise continues her restoration to health (and that she's still my wonderful trophy wife). However, we have now started to deal with issues related to her being on voriconazole for her cocci. In 2006 when it was determined that Denise's Valley Fever infection progressed in the liver & brain while she was on fluconazole, she was switched over to voriconazole, and things improved. But the drawback of voriconazole is an increased risk of skin cancer. In spite of her wearing sunscreen and staying out of the sun as much as is practical, she had some precancerous lesions removed, mostly from the backs of her hands (sunscreen washes off easier than we wish). So she's started wearing yoga gloves when she's out & about. I think I'd better get digging and plant some more trees for shade around the house.

April 1 weekend I went to U.C. Davis to attend the 55th annual Cocci Study Group with my aunt, a nurse that can explain the jargon to me. Some major highlights:

Nikkomycin Z is an antifungal that's been shown to cure (not suppress, but cure) cocci in lab mice. A presenter shared a study done in dogs that likewise seems to show that 60 days of NikZ treatments cured the dogs. When asked about the time when the drug may be available and the cost, the presenter guessed maybe 5 more years, and no idea on cost, but it will be expensive (ever more expensive than voriconazole, I assume). But she also pointed out that much of the financial toll of Valley Fever is the long-term treatment (lifelong treatment if there's been meningitis involved, as is the case for Denise). So 60 days of NikZ treatment and being cured could well be less expensive than lifelong treatment with azole drugs just for suppression. I'm encouraged, and eager to attend the meetings in coming years.
Southern Utah will likely become an endemic region for cocci due to anticipated changes in climate and the accompanying migration patterns of burrowing animals that are suspected to be carriers of cocci.
Pleasant Valley State Prison in Coalinga (where Denise is from... city, not the prison) has the highest number of cocci-related deaths in the prison system. A federal prison is set to open in Mendota (near Fresno). So the thinking is that as the federal prison starts reporting anticipated cases of cocci, then the disease will finally get onto the national radar and stand a better chance of getting more funding for research and treatment.
Related to finding a vaccine or cure: the cell wall of cocci is very different from cell walls of other fungi. One presenter proposed that the key to vaccine/cure will be found in carbohydrates on the surface of the organism, not in the proteins, as I believe had previously been thought.
Cocci's not limited to humans, and the veterinary portion of the seminar was fascinating. Of 833 California sea lion deaths examined since 1982, 10 of them died of cocci. The presenter showed a satellite photo of Santa Ana winds blowing cocci-laden dust from California's Central Valley over the mountains and out over the ocean.
A hunter shot a bear around Shaver Lake above Fresno. The hunter gave the hide to a taxidermist and the meat to a meat processor. The meat processor found huge lesions inside the chest cavity and notified a biologist with Fish & Game. Testing showed the lesions to have cocci granulomas, the carcass was discarded, and the hide frozen for further testing. So an interesting discussion arose regarding whether the meat would have been safe to eat and hide safe to display. The answer to both was probably yes, because the heat level from cooking the meat and the pH level of the pickling process for preserving the hide would have been too high for the cocci organism to tolerate (and ingesting cocci doesn't seem to pose a problem anyway). The hunter would like to get the bear hide back. At any rate, it was strange that the bear contracted cocci that high up in the mountains.
During a lunch break we were treated to a tour of U.C. Davis' Veterinary Teaching Hospital, and the guide was 94-year-old Dr. Robert L. Leighton, Emeritus Professor of Surgery. He's seen lots of changes to veterinary medicine over the years and pioneered many of the changes. And he was loaded with funny stories, too. Very enjoyable time.
At dinner after the seminar, a doctor said that there was a case of cocci in Italy during WWII when a ship carrying hay from Arvin CA was unloaded in an Italian port. Another doctor piped in that when PanAm first started flying across the ocean, a case of cocci was reported in Japan. Apparently someone was cleaning the plane after a flight and contracted the disease.

Several of the attendees from Phoenix were on Southwest flight 812 from Phoenix to Sacramento. During flight, about a 3-foot part of the roof peeled back. The aircraft landed safely, no injuries. Sunroof's good in a car, bad on a jet. Next year's conference will be in Tucson AZ. I think I'll drive.

Happy Thanksgiving 2010

2010-11-25T22:33:00.000-08:00

It's another happy Thanksgiving around our house. I'm thankful that Denise's tests since the last post continue to show no detectable cocci. She's been consistently healthy enough to get up in the mornings with us and help get us off to work/school and has been driving herself to volunteer in Jacob's & Gracie's classrooms at school every other week. And Denise looks tremendously better than she did Thanksgiving 2005 (scroll down to the Nov 25 2005 entry).
Her case was featured in the Fall 2010 issue of NEXT, Methodist Hospital of Arcadia's quarterly magazine. We got to do a photo shoot with her doctor from the CCU there and spend some time visiting with him (he's a much better-looking guy than me, but for some reason my picture got published instead of his).
Particularly exciting for Denise lately is that she has been able to get back into doing her artwork. Last year she tried working as a painter for a great family at my school that runs a prothetics business (Aesthetics Prosthetics... check out their incredibly life-like work), but Denise didn't feel her energy level, vision, and coordination were up to her expectations yet. Now over a year later, being able to again have a creative outlet doing her painting is another happy thing. Considering the issues with neurology, vision, and energy that she's had to deal with, being able to get back to painting is a major step in getting back to normal. Visit www.artsydd.com to see some of her work.

Methodist Hospital Campaign Poster Girl, Cocci Study Group in Surprise AZ

2010-03-28T20:27:00.000-07:00

Denise's story was featured in the 2009 year-end fundraising campaign letter for Methodist Hospital in Arcadia, the hospital where her journey with cocci began. The hospital is building a new patient tower. I can't find a link on their website to the publication with Denise's story, but here's a link to the Methodist Hospital Foundation site. If you happen to be fortunate enough to have money to give away to a good cause during these stressful economic times, Methodist Hospital is a worthy organization to consider.

I just got back from the 54th annual Cocci Study Group held this year in Surprise AZ. My aunt Jackie the nurse went with me to explain much of the medical jargon. As usual, it was very informative. This year was especially interesting since they dedicated a big chunk of the program to cocci during pregnancy. Some highlights & factoids that I found interesting (and I hope I understood the information to accurately record it here):

There's not much data on pregnancy & cocci. According to data from 1988, among 47,120 pregnancies (I didn't catch which city/region), only 10 women had cocci, another 4 were probable cocci. Only 4 of those 14 had disseminated cocci (apparently none with meningitis), and 3 of those 4 survived. So as far as I'm aware, Denise is still the first I've heard of that survived a pregnancy with disseminated cocci meningitis.
Several cases were presented in which pregnant women with cocci that used fluconazole gave birth to children with similar multiple birth defects (described as being similar to those of Antley-Bixler Syndrome). Several of the children died in infancy. So fluconazole in the 1st trimester is definitely bad, unknown effects in 2nd & 3rd trimesters. As such Amphotericin B is regarded as the best bet for treating pregnant women with cocci.
In several cases, pregnant women with cocci have delivered healthy babies, but then the women died 9-19 days after giving birth. So it was proposed that placentas be looked at for stem cell research, as there may be something there with protective properties against cocci.
The most severe cases of cocci appear to have acquired their cocci infection during the 2nd and 3rd trimesters, rather than having had cocci prior.
Women that have cocci should not use oral contraceptives. It appears as though estrogen may allow cocci to grow faster (try the injection contraceptive Depo Provera instead I assume). They should continue on azole meds and not get pregnant.
If a woman has cocci meningitis, she should NOT GET PREGNANT! That would be a very difficult situation indeed. Denise & I know this to be true, so the doctors were preaching to the choir on this point.
2/3 of all U.S. cocci cases come from the stretch of the I-10 between Phoenix & Tucson, the "Cocci Corridor"
Weather patterns have changed and recent dust storms have blown dust from cocci-endemic regions to other areas. Expect to have more cocci reported in Colorado, Oklahoma, Wyoming, and Texas.
Nikkomycin Z, a promising drug that cures cocci in mice, completed safety testing in humans in September 2009 (healthy humans without cocci have been given the drug and not had any ill effects). The next step in testing (effectiveness) will take several years to develop, and 2017 was thrown out as a possible year to have it marketed. But that's only if big bucks come rolling in for it. Here's an article about it on the Valley Fever Center for Excellence site.
There's a skin test for cocci that's in the works that will likely be marketed under the name Spherusol. It was submitted to the FDA last year and will hopefully become available later in 2010.
A case was presented in which it appears that the patient had the problem of hypermetabolizing his cocci medication, making it less effective against the cocci. The medication is the same one that Denise is on now (voriconazole). But when they added cimetidine (Tagament), the levels of voriconazole improved. We're curious about whether Denise may have hypermetabolized the fluconazole that she used to be on, possibly explaining why the cocci progressed while on fluconazole. And if so, perhaps it's worth looking at again with cimetidine. The voriconazole is not yet a generic, so it's quite an expensive copay and has some side-effects that fluconazole doesn't have.

So there was quite a lot to wrap my head around. Fortunately, breaks & dinner after the conference offered a great opportunity to get time face-to-face with doctors & researchers to chat about Denise, as well as unwind and decompress. It turned out that we shared a table at dinner with a father/mother/son team that have been involved in cocci research for decades (dad since before 1960, mom has long been involved with the Valley Fever Vaccine Project), and the son even co-founded Valley Fever Solutions with Dr. John Galgiani as an extension of the work at the Valley Fever Center for Excellence for the purpose of commercializing the aforementioned new drug candidate, Nikkomycin Z. We wish him success, and in a hurry.

Merry Christmas, ER & cocci reactivation scares

2009-12-24T14:50:00.000-08:00

Merry Christmas! As you can see from this year's Christmas picture, Denise looks healthy and Jacob wins the prize for best expression. We're grateful for another year that Denise has been able to continue on the long road to recovery and I can't help but reflect on this picture from 2005 when she wasn't doing so well.
We had a couple points of anxiety since the last post.

During a summer vacation trip we had a scare that resulted in a trip to ER, but all turned out well. Denise was swimming and doing somersaults in the pool with the kids. After getting out, she suddenly complained of severe chest/ab pain, numbness in hands, shortness of breath, and she had a weak pulse & looked very pale. We went to the ER at Palomar hospital in Escondido where they said she had low blood pressure and was dehydrated. At the end of it all, they figured that she had been dehydrated (& hadn't noticed since the weather was so nice and we were in the pool), and perhaps her hernia had become aggravated by the swimming, causing her to hyperventilate while dealing with the pain (causing numbness).

Then more recently (November) we were greatly alarmed when Denise's regular testing for cocci showed that the disease had reactivated. Fortunately a second set of tests showed no cocci. This was corroborated by other test & scans (bone scan, MRI, CT, spinal tap, liver tests). We are encouraged because it seems that Denise's immune system is able to fight off a mild recurrence of the cocci without having to increase her medication. The infectious disease doctor said that much like a person that has had chicken pox will always have the antibodies in their system and could test positive for chicken pox without actually being ill, Denise may test positive for cocci from time to time since the test looks for cocci antibodies. As long as the titers are low, we probably don't have any reason to be alarmed. Nice to hear, but I admit I still get a little nervous thinking about it.

A bittersweet event for Denise came in the form of a job offer. Some parents from my school run a prosthetic business (Aesthetic Prosthetics in Pasadena CA) and needed an artist to paint the products. They picked Denise and started training her for the job. Ultimately she decided to quit. She just didn't have the energy and was getting very fatigued, and she didn't feel that her vision was up to what it should be. She was sad to leave, as she really loved the family that runs the business, the other employees, the work environment, the paychecks, and it seemed like a small miracle to be offered a job in this economy in the first place. At the end of it all, though, it made her feel good that they thought she was talented enough to get a shot at the job. She has expressed frustration with her lack of energy & abilities since her illness, and felt like a bad mom & wife for not being able to help as much as she'd like with the kids, or work to contribute more income to our family (as if that's been a concern after almost losing her). The opportunity to work made her realize just how nice it is for our family to have her alive, and even thriving enough to participate in running the home front.

As we celebrate Christmas and prepare for a new year we hope that you likewise take the time to be thankful for your own life and for the family and friends that make your life enjoyable.

Cocci study group, Lupus scare

2009-05-09T22:27:00.000-07:00

Denise continues to heal and we continue to enjoy her presence. As happens from time to time, we had a little point of concern. In the spring, Denise had some wacky liver labs that showed positive results that were consistent with lupus. More focused testing showed that she has mild case of a thyroid problem called Hashimoto's disease. Between the two, we'll take the Hashimoto's over the lupus.

I attended the 53rd Annual Coccidiodomycosis Study Group in early April. This is an annual gathering of the leading professionals in the study and treatment of valley fever. This year it was held at Cal State University Bakersfield (yup, in a cocci-endemic region). As was the case for the last couple years, my aunt that's an RN went with me to explain the medical jargon, and we got to rub elbows and discuss Denise's case with the big-hitters that were there. We had a mixed bag of good and bad news, but all interesting.

The vaccine project is in effect stalled due to funding & politics.
Nikkomycin Z, which has cured cocci in mice, is in human trials, but the remaining drug will be used up in the trials. It's very expensive to make and seeing it to market will be a long process if it happens at all.
Cocci meningitis patients have a higher risk of stroke and neurological damage than previously thought (or at least what I had previously heard). While not good news, it does make us even more grateful that Denise has been doing so well.
The geologist (the one guy I can understand unassisted) related that he can dig in one spot and find cocci in the soil, move over a foot, dig, and find nothing. He also pointed out that west Texas is an endemic region, and there are major population centers just to the east of where the endemic region tapers off. There's a concern that weather patterns may bring cocci to the central Texas cities of San Antonio, Austin, Abilene, etc. in greater numbers in coming years.
At the dinner concluding the conference, Dr. Hans Einstein (who's been in cocci research a long time) narrated a slide show about the history of cocci study and the personalities involved. One of the stories: Johnny Bench played at a golf tournament fundraiser hosted by Buck Owens in Bakersfield on a windy day in the early 1970s. He contracted cocci and started exhibiting respiratory distress a few weeks later with the Cincinnati Reds. The doctors out there weren't familiar with Valley Fever, and before the possibility of cocci (and a simple treatment with antifungals) was suggested, he had already undergone a lung biopsy to remove the lesion, which was suspected at the time to be cancer.

Denise's magazine article

2009-03-21T12:07:00.000-07:00

Our church is doing a series about encounters with God. One of the pastors asked Denise to write an article reflecting on her experience for inclusion in the March/April/May 2009 issue of Seasons, our church's newsmagazine. The article's title seemed to focus more on me as the blogger, and the article mixed portions of what Denise wrote with some of what I typed on the blog. Here's a link to the pdf of the magazine (article is on page 14). Following is Denise's entire article that she wrote herself:

Since becoming a mom I have faced some of the most emotionally trying times of my life. Sometimes there have been more toils and snares than I thought imaginable but yet I have had more tremendous joy from being a mom. My experience has been a lesson of letting go and giving my pride, my expectations, and my emotions up to God. Surrendering all these things day by day is a process, and I don't have it perfected. I have been refined many times by fire but I still need refining. I am in pursuit of God's perfect plan for me. We can only speculate on why God allows some things to happen to us. We as believers know that He works all things together for the good of those who love Him (Rom. 8:28). He brings light into our darkness, faith to our disbelief, and restores joy to our broken hearts.
I grew up the oldest of three girls and a perfectionist by nature. If I wasn't good at something the first few times I rarely tried it again. As a young women I was told that I would be a terrific mom. I had helped my mom and dad raise my youngest sister who is twelve years younger and who still calls me “Mom” on occasion. I was energetic, patient, and loved kids.
In 1997, I was married to my college sweetheart. He was great with kids, a comedian and a grade school computer teacher. We had our first child, Gracie, in 2001. I had fears about being a mom. The learning curve is so steep for first time moms. Due to circumstances beyond my control, at two weeks old, Gracie ended up in the NICU at Children's Hospital of Los Angeles. We were there for two weeks, which seemed like an eternity. I was deeply depressed. I blamed myself for what happened to Gracie. I told God at that point that I would take my life if she didn't make it. Gratefully, we both survived this incident but I still could not let go of my guilt. I was also mourning the fact that my mothering experience was not perfect like I had imagined it would be. It wasn't until the day of Gracie's first birthday that I was able to give her and my experience over to God. I felt that I was finally able to receive healing.
In 2004 I had my son Jacob. He was named by Gracie, who was two and a half at the time. My early experience with him restored my confidence in my abilities as a mom. It helped that Gracie loved her brother and was a such a big helper.
In July of 2005 I was six months pregnant with our third child, Daniel. He looked as if he was going to be another big healthy baby. One night I woke up with itchy hands and feet. The next morning I had a rash on my forearms. I started having high fevers as the day progressed. On July 18th I was admitted to Arcadia Methodist Hospital. This was the beginning of an 8 1/2 month hospital stay, and I almost died. I was diagnosed with disseminated coccidioidomycosis (Valley Fever) with meningitis, the version of the disease most likely to end in death. It's contracted from inhaling a fungal spore that lies in the soil found in California's central valley, where I had been visiting my parents. I was put into a medically induced coma for three months. During that time I delivered Daniel. He was stillborn. When I awoke from the coma I realized I had lost our son, I could not use my limbs, my muscles had atrophied, I had a feeding tube, and I could not speak because I had a tracheotomy and was on a ventilator. And it was at that point that I asked God to restore my health or take me home to Him. He decided to restore my health. On March 30th 2006 I went home to my family.
Years before this happened I had asked God for a testimony. I wanted to do more for the Kingdom because nothing I did on my own seemed to be enough, I had asked God to use me as His handmaid (Luke 1:38), trusting that He would give me the strength for the task.
My husband wrote a blog while I was hospitalized. It touched many people locally and abroad. While I was incapacitated God was using me for His Kingdom. The apostle Paul said that through his weakness, the Lord's strength is make perfect (2 Cor. 12:7-10). I am grateful to my loving Father that He chose to heal me and use my life to show His glory. And I am also grateful to the body of Christ that prayed for me. If you would like to see the full story and a slide show of my recovery please visit pullingfordenise.blogspot.com.

Merry Christmas 2008, Doing well, Facebook

2008-12-25T12:16:00.000-08:00

Merry Christmas! Denise is looking healthy, the kids are cute, and Denise says I look nice in a suit (I avoid suits as much as possible). Her progress since our 2005 Christmas picture is amazing. She even joined a gym recently to try to work on her balance, strength and energy with regular workout classes.

Since our last post, our medical concerns have been few. Denise has hearing aides enjoys being able to hear again (she opted for tiny hearing aides that fit completely in her ear). The most recent test for cocci came back undetectable again, and we are very happy for that. She's also been experiencing fewer GI issues since she started a simple regimen of over-the-counter items from the drug store. Denise had a couple liver labs over the last few months that came back unfavorably at first. Retesting after eliminating supplements from the health food store showed normal results.

Over the summer Denise discovered Facebook. You can look her up as Denise Hall Williams. She's not on frequently, but she would be encouraged to hear from any of you that kept up with her struggle.

3 year cocci anniversary, hearing aids

2008-07-18T21:28:00.000-07:00

Today, July 18, is the 3 year anniversary of the start of Denise's struggle with cocci. So I thought that this would be a great time to finally post an update to share all the good news.

In February Denise did a photo shoot for Edwards Lifesciences Corp. They made a cardiac device that helped her tremendously. One of the CCU nurses at Arcadia Methodist saw the device in action, then went to work for Edwards, and called us to see if Edwards could use Denise's story in their annual stockholder report. The story behind this photo is that the kids were getting squirmy after a while, and the photo crew couldn't get a picture with everyone posed properly at the same time. So at one point I told the kids to cut loose and tackle mommy. They did, and the photographer started clicking pictures. One of those semi-candid shots is the one they used. They put Denise's picture on the front cover and the online version even has a bit about her that didn't make it into the printed report (click here). A note about the doctor on the page with Denise in the online report: Dr. Rogove, D.O., F.C.C.M., F.A.C.P. I think that's a string of Latin abbreviations for "Was not one of Denise's doctors, but looks darn spiffy in a suit and is an adroit spokesman for Edwards' products." It's a bummer that photos of Denise's actual doctors aren't there. A bigger bummer is that Dr. Rogove's in Laguna Beach while we're in, well, Duarte. 'Nuff said.

April: My nurse aunt & I attended the Cocci Study Group in San Diego CA, and Denise came along this time, since the conference wasn't held in a cocci-endemic region. Denise got to meet & thank two of the biggest names in cocci research for their work: Dr. Hans Einstein (light suit) and Dr. Demosthenes Pappagianis (dark suit). They've been studying cocci since the 1950s. I need to do some fact checking, but I believe that Dr. Einstein is credited with figuring out an effective way to combat cocci (using amphotericin) in the 1950s and Dr. Pappagianis is credited with publishing his first cocci paper around the same time. So we got to chat with the big-hitters of Valley Fever research, and all I had on me with which to capture the moment was my lousy camera phone. Sigh.

The latest titers came back showing undetectable levels of the cocci antibody! The voriconazole is suppressing the cocci nicely. Since that's the case, there's no need for those pesky routine spinal taps. Yay!
Her neurologist ramped down the anti-seizure medicine and discontinued it several months ago, and Denise has been doing fine.
She recently had an echocardiogram (to check her heart's strength) and an MRI (to check for any advancement of lesions in the brain). We haven't gone to the appointments to hear the results yet, but the cardiac tech told Denise that it was hard to believe that her heart was bad at one point. That was encouraging.
Her GI tract is coming back to normal, and ab swelling is going down. Her GI specialist told her that after what she'd been through, it could take her body a couple of years to feel and look "back to normal." Since things are getting better, he took her off of one of the GI-related meds. She's discovered that a little coffee has some of the same benefits.
Her vision improvement seems to have stopped some time ago. But she's adapted to mild vision impairment so well that she hardly notices it anymore (until she goes for retinalogist visits). Other than no longer feeling comfortable about driving at night, she's doing nicely. It's wonderful that she's progressed from what she described as a large black field in one eye, to now having some blurriness that she's adapted to.
Her hearing improvement also has stopped. The results of her ear exams show no physical problem, so the doctor assumes that the damage the cocci did to the hearing portion of the brain is probably permanent, and recommended getting hearing aids. She's said that in one ear, everything sounds badly muffled, and she's noticed that she can't hear people as well as she was able to before getting sick. There have been many instances wherein she's felt embarassed by either misunderstanding what people have said, or not hearing them at all and coming across as rude because she doesn't respond at all. The problem is multiplied in noisy settings with multiple conversations going on at once. She's teetering back & forth between wanting something completely in the ear (so that nobody notices she's already got hearing problems) and wanting a behind-the-ear hearing aid that's easy for people to notice (so if she doesn't respond properly to other people, they'll get the clue that it's just a hearing problem, not a rudeness problem or a mental problem).

So there you have it. Lots of good news, and no crisis. Thanks for checking in!

Merry Christmas! Oct, Nov, Dec 2007 Updates

2007-12-25T20:56:00.000-08:00

Merry Christmas! As you can see from our family photo, Denise continues to heal nicely. Compare this photo to these December 2005 photos (you'll have to scroll way down), or watch the slide show that's in the previous post below. With progress like that, who needs to make up a wish list? Jacob's face shines with pride, as he's only three, but can ride a two-wheeler playground bike (and lets everybody know it). Gracie has a big smile even though she's all done with horseback riding lessons until we can save up for a few more next spring or summer. And the photographer caught me in half-smile mode (we're migrating to Windows Vista at work). Before the nice medical news, here's a funny Christmas-related story. Gracie's kindergarten class talked about "making healthy choices" during Red Ribbon (drug awareness) week at school. So she thought that since Santa is overweight, we shouldn't leave him cookies on Christmas eve. Instead, we should leave "ants on a log" (celery with peanut butter & raisins). Then a few weeks later she told me that maybe "ants on a log" wasn't a good idea because Santa might be allergic to peanuts & peanut butter. So she concocted the idea of "ants on a snowy log" that would substitute cream cheese for the peanut butter. Nasty. But at least she didn't think of using tofu.

Some milestones from the past three months:

Denise & I spoke at one of my school's Parent Teacher Fellowship meeting and presented her slide show on the big screen.
We also shared our experience and the slide show at a friend's church (literally... it was Alhambra Friends Church... that's a code-word for Quaker). Denise still hasn't plowed through all of this blog. But when we're done with that task, we'll share at our church, too.
During a checkup of Denise's trach scar, the plastic surgeon noted that not only did the appearance of the scar improve, but Denise's abdominal swelling had gone down. Then in checking that out, he found that she's got a hernia. After what she's been through, we're not too alarmed.
The infectious disease doctor told us that the blood & liver labs were all within normal ranges, and titers for cocci antibodies came in at less than 1:2 (prior it was between 1:2 and 1:4), but once again the lab folks ignored the notes on the paperwork and the labs did not go to U.C. Davis, where the tests are more sensitive. So the doctor is going to go to bat for us next time in January to make sure the labs get sent to the right place for testing. If that titer also comes back favorable, he's considering changing from voriconazole (Vfend) back to fluconazole (Diflucan). When Denise was having some setbacks on March 11, 2006, there were questions about whether her problems were caused by withdrawal from Reglan or by not tolerating Diflucan. They switched her to Vfend and we never did find out what caused the problems. But now that she's doing so well, she might go back to Diflucan and the ID doctor will keep a VERY close eye on her cocci labs. Going back to Diflucan would save us a significant amount of money each month, and Denise wouldn't be so sensitive to sunlight (Vfend puts her at increased risk of getting a specific type of skin cancer).
The retinologist hasn't gotten back to us yet, but didn't find anything new to report during the appointment. Denise copes with her vision problems well, though these short winter nights and increased nighttime driving have made her aware that her night vision isn't what it used to be. So driving at night isn't her favorite thing to do right now.
The neurologist thought Denise was doing well and plans to take her off of her low dose of anti-seizure med Trileptal after the holidays. She continues to do well on the "almost negligable" dose of Abilify (to combat the manic phases that crept up as a result of the cocci going to the brain). It is possible that, if she continues without any problems, that she could discontinue that med as well. She's happy that it doesn't cause the weight gain, like her last med did. In fact, as mentioned above, she's been losing weight at a slow, stable, healthy rate over these past months. So both in mood and physical appearance, she's returning to her pre-illness self. Before her next appointment in June 2008, she should have another spinal tap (to check for presence of cocci antibodies in CSF) & brain scan (to check status of brain lesions, particularly calcification of the basal ganglia). Last, he recommended a hearing screening to determine what is causing the instances when Denise feels that she's misunderstood what people have said or people can't get her attention, which can be embarrassing & stressful to her. Is it hearing, or some processing or state of consciousness problem that's crept up since her illness?
Testing started in September on the drug Nikkomycin Z against Valley Fever. Other anti-cocci drugs only suppress the fungus. Nikkomycin Z has been shown to kill the fungus in mice, curing them of of the disease. Testing will start on humans out in the Tucson, AZ area. Here's an article: http://uanews.org/node/15940

Until next time, thanks for the the comments & emails, and thanks for caring!

August & September 2007: Video, Cocci vaccine, Neuro appt.

2007-09-30T22:51:00.000-07:00

We've put together a photo slide show to document Denise's hospital stay & recovery. Just a warning, a couple of the pictures are hard to look at. I tried to only post uplifting pictures of Denise during her struggle. But Denise wanted you to see just how bad things were for her: in a medically-induced coma, holding baby Daniel's lifeless body, hoses, wires, vents, machines, feeding tubes, catheters, fevers, trach, hair loss, weight loss, scars, exhaustion & everything else. That way it would underscore just how blessed we are that she not only survived, but is getting better with time.

Denise visited the neurologist in late August. He was pleased to see that she's continued without seizures, lapses in consciousness, manic episodes, tremors, or anything else. I'd hoped that he would lower her anti seizure or other meds, but he's keeping her at the same level. Denise will have labs done up and visit the infectious disease doctor in late October. The last labs showed her titers for cocci going another notch toward normal, and her liver labs came back normal. So I am hopeful that we'll hear more good news.

A couple weeks ago I flew to Phoenix (cocci central) & back in one day to hear a talk by Dr. Garry T. Cole of the University of Texas, San Antonio. He's working on a vaccine for Valley Fever. I felt kind of bad for him because the talk was not very well-attended. But that worked in my favor, as he took a great deal of time to talk to me about his work (and nice guy that he is, he used little words as much as he could so that I'd understand). Anyway, I thought he'd be talking about Nikkomycin Z, the anti fungal that might be the magic bullet in killing cocci, not just suppressing it. But his work is completely different. Leave it to a guy like me to mix up a cure project with a vaccine project. In a nutshell, it seems that a vaccine is workable. They've nailed down which phase of cocci development from which to start (killed spherule, not arthroconidia), the specific component of the spherule from which to derive the vaccine (actually, a protein on the spherule wall, if I understood correctly), and they've got some very encouraging results from testing on mice. All they need is money. He brought up the tremendous rate of infection among military personnel that train in cocci-endemic regions. He also brought up the costs associated with their treatment, downtime, disability payments, and in the worst cases, benefit payments to their survivors. It's possible that the Army and/or Marines might back the cocci vaccine out of pocketbook concerns if nothing else.
Here's a short (though technical) intro to Dr. Cole's work: http://bio.utsa.edu/faculty/cole.html

And for non-medical stuff, Denise continues to bite off a little more as time goes by. She's been able to stay awake longer during the days as her endurance comes back. Gracie started kindergarten. Jacob goes to preschool and stays home with Denise one day a week. She'd like to increase it to two days a week as she's able to catch up on the time she missed with him while she was in the hospital (she went in when he was 15 months old, came out when he was about 24 months old... about a third of his life later). She's also been getting more involved at the school as she's able, started connecting with other moms through a M.O.P.S. (Mothers of Preschoolers) at church, and doing a little bit with Door of Hope, a Pasadena ministry to help homeless families. And for my birthday, we went to Disneyland and ate at Goofy's Kitchen. Yes, I am the biggest kid in my family.

June & July 2007: Titer down to 1:2-4, Liver normal

2007-07-31T18:45:00.000-07:00

Denise's appointment with the infectious disease doctor was loaded with news that put smiles on our faces. Her liver labs all came back within normal... even the Alk Phos! Considering that she had complete liver failure & was yellow in the hospital two years ago, and had what is suspected to be cocci-caused granulomas in the liver last year, this is amazing! Better yet, the cocci titers came back from U.C. Davis at 1:2-4, lower than the 1:8-10 that we heard about six months ago. So things are progressing nicely. Her next test will be in October, as will the next visit to the I.D. doctor. Denise is trying the South Beach diet and feels like it's helping get her back to her pre-illness weight and reduced the ab swelling (recent scans show no ascites, indicating no presence of infection). So we're relieved to have some grasp of how to cope with the onset of the GI-related problems since she came down with Valley Fever.

This summer has been so much better than two summers ago (when Denise was in a coma) and last summer (when she was doing so much rehab). I got off work for the summer in June and life's been good! My school honored me by dedicating this year's yearbook to me, and they also had wonderful things to say about Denise continuing to heal & thrive as a testimony to God's mercy (not to mention the hard work of the medical teams). We gave Jacob his summer haircut (mohawk). We went to court for the first time ever (and hopefully the last). It was just small claims court, and it was surprisingly low stress... nothing like Judge Judy. We went to Disneyland and were treated to a night at the Disneyland Hotel (the kids loved the Peter Pan-inspired swimming pool there). We went to visit Denise's sister & brother-in-law in Montana for a few weeks (this picture of Denise was taken in Philipsburg MT). We crammed in a lot of first-time activities for the kids: a visit to Yellowstone, fishing, horseback riding, driving a boat, going to a dirt track car race, and Gracie even learned how to shoot a rifle and took horseback riding lessons. I tried wakeboarding (I'm exactly as unsuccessful at that as I am at water skiing). And we celebrated our 10th anniversary in July. A couple years ago, I didn't think that we'd make it to this point, but I sure am grateful that we're here!

June & July 2007 update

2007-07-18T23:55:00.001-07:00

On this date two years ago, July 18 2005, Denise went into the hospital and our lives changed.
There's so much good stuff to write about from June & this month... but we're in summer vacation mode, so I'm going to be a little bit lazy and post the happenings from June & July at the end of July.

May 2007: Ab distension, Weaning off seizure meds

2007-05-31T23:24:00.000-07:00

The tall guy with Denise in this picture is a parent from my school that works at USC University Hospital. He initiated Denise's move there during one of the times that we thought we'd lose her (the post for September 27, 2005 has those details). Our school had a fundraiser dinner, and he was there. He hadn't seen Denise for almost a year and was glad to see how much she has improved. He's one of our medical pro heroes, along with the other people pictured in the January 2007 post. Personally, I think that Topps should maket trading cards of all these people.

We paid a visit to the GI doctor this month. A couple of the most frustrating things for Denise has been the change in body shape and the slowing of the GI tract (she was described as being a "GI cripple" at one point during her ordeal). Several times, people have "congratulated" Denise on being pregnant, or asked when she's due. So over & over, Denise has had to explain that she's not pregnant, we can't have any more kids, she's just shaped this way due to secondary issues from the cocci infection, etc. etc. etc. She knows that people certainly mean well, but having lost baby Daniel during her ordeal in the hospital, painful issues get brought up over & over. So it's not just the physical that's frustrating; it's the emotional as well. Anyway, we already found out from the neurologist that the Risperdal that she was on causes increased appetite (this was handy when Denise weighed 87 pounds. Denise prefers the Abilify that replaced the Risperdal, by the way... she seems to have more energy. We also learned that the Trileptal slows metabolism (anti-seizure med). So we hope that the combo of switching to Abilify and weaning off of Trileptal (more on that below) will ease the abdominal distension.

The lab results from tests ordered by the GI doctor showed no thyroid problem (he suspected there was a thyroid problem, and we're requesting a visit with an endocrinologist next). He's suspecting that the stress of what she went through, and the duration of it all, caused excess cortisone in her system. My limited understanding is that this would slow everything down (GI tract, metabolism, everything). The good news is that things can apparently return back to normal over time. In the mean time, Denise has tried two meds to help stimulate her GI tract into working regularly, and they seem to work on & off.

She's been seizure-free for well over a year now, and the neurologist told us to cut Denise's already low Trileptal dose to half of what she was on and try to get her off of it. She went down one week ago tonight, and it takes a while to get it out of her system. So I'm supposed to keep an eye on her to see if she spaces out, stares, etc. No problems so far. Of course, this presents a slight inconvenience, as someone needs to be with her for a while while driving for a couple weeks. But I'm off for the summer soon, so the timing's great.

Next month she gets a fluorescein angioplasty of the eyes to determine in great detail what the status of the scarring is in her eyes. This will be done by the doctor that's familiar with cocci that I wrote about in the last post. We also have an appointment with the infectious disease doctor, the psychoneurologist, and a checkup of the trach scar.

I went to a funeral for a great uncle this month. I remember him most from when I was much younger, when we'd see extended family at gatherings every couple years. He was a neat guy, and funny (during the eulogy it was stated that if he were with us and saw anyone sad & somber, he'd have said, "Knock it off!"). So I was looking at the casket and started choking up. Then I transferred what was happening (his funeral) to what what could've happened to Denise. I was thinking of how close Denise was to being in that casket. Then I really started choking up. Fortunately, there was no booming voice telling me "Knock it off!" Anyway, I got home even more excited than usual to see my wife. I'm really looking forward to this summer when school gets out. After spending summer 2005 at the hospital, and spending summer 2006 doing the tail end of rehab, we're really looking forward to a "normal" summer now.

At church we happened to plop down next to this wonderful family. We didn't recognize them, but they recognized Denise. They were keeping on top of her situation from the very beginning, before this blog was even started. How? They've got connections to Arcadia Methodist Hospital where the journey began. It even turns out that a sister (in-law?) was one of the pharmacists that provided Denise's meds to the ICU. Small world!

April 2007: Retinology appointment, Switch meds

2007-04-23T22:51:00.000-07:00

Denise turned 34 this month, and to celebrate we went to the Napa Rose restaurant at Disneyland (sorry about the grainy camera phone picture). The food was stellar, as was our company (a really neat brother & sister; the brother had a long hospital stay after a nasty accident, and the family set up a blog). But the best part was getting to spend a special birthday evening with my 34-year-old wife, whom we thought we were going to lose at age 32. I'm one blessed man!

Here are the developments from this month...
We had an appointment with a retinologist that's new to the office we've been going to, but he was quite familiar with cocci and the effects that it can have on vision. Bonus: Other doctors that have patients with cocci-related vision damage seek his opinion! So we're confident that we have the right guy. He found that the optic nerve is no longer swollen (indicating that there is no infection), however there is still retinal scarring. In spite of that, Denise's vision has improved! Where there used to be an area of darkness (the cocci caused her to go partially blind in one eye), now there's just an area of slight blurring. We have to go back again for a fluorescein angioplasty so he can really take a look at what's going on with her eyes.
We paid a visit to a doctor that a friend from the kids' preschool recommended. He switched out the Risperdal in favor of Abilify (it's for a different primary condition, but he thought it would benefit Denise). She likes it so far and has felt more energetic (Risperdal causes drowsiness), no signs of manic behavior, no signs of seizure. The new med doesn't have the effects of increased appetite & slowing the metabolism. She's all excited about starting to return to her pre-illness weight. Just tonight she showed me how her pants are starting to fit loose and sag. I'm tempted to ask the doctor for a prescription for myself. :O) The doctor that had Denise try the Abilify also thought that she could eventually go off of that and the anti-seizure med as well, since they're both in such low doses. So we'll see what happens.
On a sad note, my dad died a year ago on the 18th of April. Easter was a little difficult for me this time, more than Christmas or Thanksgiving for some reason. My guess is that it's because in my mind, his passing revolved around Easter last year. I drove him to the hospital going into Easter weekend and we lost him two days after Easter. Time heals.
Ending on a lighter note, Denise's blog crossed the 130,000 hits mark in April! I'm glad that the hits have slowed down... things are normalizing and there's just not as much reason for anyone to check this blog frequently anymore. I'm also glad that the hits still trickle in... thanks for caring enough to check up once in a while.

March 2007 Update: Cocci Study

2007-03-31T21:59:00.000-07:00

We participated in a 3 mile ABI (acquired brain injury) awareness walk this month, and here's a picture of Denise cooling down with the kids. Months ago I was put into contact with a man whose wife was hit by a car in September and is ever so slowly recovering in the hospital. Meanwhile, he's trying to maintain some normalcy... grappling with balancing caring for her, keeping up with work, and raising a daughter & son that desperately want mom back home. Sound familiar?

Last month the neuro doctor said to try lowering the already very low dose of Risperdal. That didn’t work well, as we had some issues and Denise had a very bad day that required me to leave work. She went back to the previous level and things evened out. So we'll look into trying something different in hopes of finding the right meds and the right timing.
My nurse aunt & I went to Phoenix AZ for the "Cocci Study Group." It was incredibly informative! We had access to the best of the best in cocci research and treatment. Several doctors took the time to hear our concerns and offer advice and encouragement. After having gone to the cocci symposium at Stanford in August, I felt much better-prepared going into this meeting. We found out that there is one other case of a pregnant woman with cocci in the brain. In her case, she did have a baby (born at 8 months gestation) and has been out of the hospital for about 5 months. I don't think her situation was as grave as Denise's. Still, it's remarkable that she survived with cocci in the brain. We also heard of a case where a man contracted Valley Fever without living in or visiting a cocci-endemic region. He purchased a vehicle from a cocci-endemic region and had it delivered to his home. The dust in the vehicle (and in the AC ducts) contained cocci, and that made him ill. I could make this quite a long post if I were to relate everything that I learned (and I only understood a small fraction of what they were saying). One very helpful doctor commended me on jumping in to learn about cocci. He said it's not one of the simpler organisms, nor a simple disease to understand. So that made me feel less stupid.
The high point of the weekend for me was that in the restroom, the Grand Poobah of cocci research chose the urinal next to mine in which to pee. Wow!

February 2007 Update: Brain damage healing

2007-02-27T21:36:00.000-08:00

A big milestone for Denise is that we did some swing dancing at a friend’s house. Denise exhibited incredible balance and coordination. Dancing for her is like riding a bike for most people… once it’s learned, it’s never forgotten.
I, on the other hand, was as lame as ever, but still had a great time dancing with her!

Super news in the brain damage department! The most recent MRI showed only “one punctate lesion” (that’s one point of damage that lit up). The MRI before this one showed multiple lesions. So that means that things are healing! I must admit that part of me wants another MRI, just to be sure. It seems too good to be true!
The February cocci titer came back “negative” for cocci, but it wasn’t sent to the usual lab at U.C. Davis. My school changed insurance companies beginning in February, and getting the cocci tests to be handled by the preferred lab is one of the small issues to work out. The I.D. doctor said that the lab that handled the most recent titer isn’t as sophisticated. We think that we have everything straightened out now, though. Cerebral spinal fluid is still negative for cocci.
Liver: alk phos is at 158. That’s down from where it was last time, and another notch toward normal.
Denise feels like her vision is improving (she’s partially blind in one eye from the cocci). We’re going to get her to a retinologist to see if the eye lesions have resolved and have a look at the optic nerve (it was swollen about a year ago at the last exam).
She’s been having ab swelling and we’ve been advised to pay a visit to the gastrointerologist again. The change in body shape has been very frustrating for Denise. She’s been doing aerobics and eating healthy, but it’s been hard to get back to her normal pre-illness weight. The neuro meds she’s on can cause weight gain by changing metabolism and increasing appetite. This was helpful when she couldn’t hold food down and weighed in at 83 pounds, but she says it’s getting a little old now.
The neurologist wants us to try lowering the Risperdal again. Denise’s on such a low dose, she almost might as well not be on it at all. But the last few times we've gone lower, we felt the need to go back to the current level again. Denise would rather be off of this med, as it also can make her pretty tired. Once the Risperdal is gone, the only other med to ween off of is the Trileptal (and Denise has been seizure-free for almost a year!).

January 2007 Update: No cocci in CSF, liver normal

2007-01-30T20:08:00.000-08:00

We're having a very Happy New Year so far and hope to have many more!
During my school’s Christmas break, we paid visits to Methodist Hospital in Arcadia and to the office of Denise’s doctor from USC. These two guys called the shots that pulled Denise back from death over & over again. They seemed about as happy as I am to see Denise alive & well. And below are pics that include just some of the people that were on the teams that worked so hard for Denise (some of these pics are from before our Christmas vacation visit, and this web site doesn't have the capacity to let me post all the pictures I wanted to upload). We hope to make it by USC University Hospital and Huntington Hospital to thank the crews there as well.

Visits to the specialists have been fewer and farther between as time goes on. This month, there were no appointments. We’re glad for that.
Last month’s visits to the specialists were loaded with good news! The cocci titer came in at 1:16. No evidence of cocci was detectable in the cerebral spinal fluid. Liver enzymes were normal (amazing, considering how bad her liver function was). Denise had an MRI to see if the damage to her brain has healed over the last year or so. We’ll get results during next month’s appointments. Lexapro was discontinued (antidepressant, neither Denise nor I thought she needed it, but neurologist thought it’d be good to have her on a low dose, just in case).

December 2006 Update: Merry Christmas!

2006-12-25T16:08:00.000-08:00

Just a quick post to wish everyone a Merry Christmas! We're blessed to have Denise at home with us for Christmas this year instead of the hospital!
We've received some more positive medical news and visited some of the doctors & nurses from USC & Arcadia Methodist to show them Denise's progress... updates & pictures will come at the end of the month's post.
And yes, that *is* an official "Christmas Story" leg lamp Christmas stocking behind my head.

November 2006 update: Meds adjusting, Throat healing, Healthier Thankgiving

2006-11-30T23:54:00.000-08:00

Here's a picture of Denise during a "heart exam." Yes, her heart was racing, as well as Gracie's. Just look at those faces! Seriously, since her cardiac specialist said a couple months ago that her heart function is returning steadily, Denise thought it'd finally be safe to go on a "thrill" ride at Disneyland. After she got off, she felt "flutter-hearted and light-headed," and in hindsight didn't think it was a good idea to go on this ride. She never wants to go on it again. Neither does Gracie.

Thanksgiving this year was much nicer than last year when Denise was in the hospital and couldn't hold food down due to the SMAS. This year we spent Thanksgiving in Escondido with my nurse aunt's family, my mom and other family. Compare the recent blog pictures of her with this picture from last year: Thanksgiving Huntington Hospital 2005

Medical developments:

Denise is trying to adjust one of her meds (Risperdal... neurologist gave her permission to gradually lessen the low dose she's on and eventually discontinue it). That's a bump & go situation. We're glad that Denise is able to sense what the increases and decreases in meds are doing to her and adjust accordingly.
We have not heard whether any cocci has shown up in the cerebral spinal fluid from her latest spinal tap, and we're awaiting an MRI to ascertain the status of the meningitis or the scarring in her brain tissue. We have appointments with the infectious disease doctor and neurologist December 12. Since neither doctor has contacted us with bad news, we are optimistic that the news will be good.
The surgeon that performed reconstructive surgery on her throat said that the scar is continuing to heal nicely.

Non-medical life continued to head toward normalcy in November. Denise's energy level allowed her to help a little with special class projects for Gracie's & Jacob's preschool classes (Stone Soup Days... it's really cool!) and go to a couple birthday parties for the kids in Gracie's class. Some friends from Coalinga came to visit us with their new baby. They hadn't seen Denise since she was in the nursing home early this year. Denise also went to a women's Bible study at First Baptist Church in Pasadena and finally got to meet a group of women who had been praying for her over the long haul. Denise also took care of the kids by herself for some of the longest periods of time yet while I was away at a teacher convention.

At this point I'd like to spotlight a couple other people to pray for.

A while back I was put in contact with a guy whose wife has been in the hospital since September (hit by a car, coma, brain injury, small slow improvements, long rehab ahead). He's got two kids at home. I kind of feel like I know one reason why I went through what I went through: to be able to minister to another guy that's going through a similar thing now. He's doing almost daily web site updates on his wife. Bookmark this: http://caringbridge.org/visit/jenniferparent
One of Denise's friends just turned 34 and is fighting aggressive breast cancer. She was a huge inspiration to Denise when in physical therapy. She's got a blog much like this one: Kristen's Cancer Battle
A woman that I've never met mobilized many people in Tennessee and several eastern states to pull for Denise. Now this woman's dad needs some pull. So we set her up a blog to get the word out: Updates on Pola's Dad
Finally, our family... me, mom, brother, grandmother (who lost both of her children and a brother within a short period of time). My dad died in April. The first set of birthdays & holidays are hard after the loss of a loved one. He would've been 64 this Saturday, December 2nd. He liked a fine brew or a dry gin martini almost as much as he liked southern gospel music. So, odd a combination as it is, I'll probably be toasting his memory with a martini (poorly made, but I'll try) while playing a J.D. Sumner & the Stamps Quartet CD in the background this weekend.

October 2006 Update: Throat surgery, Titers 1:16, LP

2006-10-10T21:33:00.000-07:00

That's one of Denise's sisters way to the left of in this picture. She visited from Montana with our newest niece. The last time Denise & her sister saw each other, Denise was still in grave condition at USC University Hospital last September. So this was a much happier visit! You probably can't tell by the look on my face. Out of all the pictures, this is the only one that had her whole family (actually, her youngest sister is missing). And it's my worst picture. At least I'm hanging with happy company.

The throat surgery Thursday October 5 went well. You can view the previous post for the details. Denise has taken to wearing scarves to cover up the scar while it's healing. She just went for a checkup with the surgeon this morning and he says it look like it's healing nicely.

We had visits with the neurologist & infectious disease doctor on October 10. They went well. We'll be going every two months now. Titers for cocci are now solidly within the 1:16 parameter, same as last time, so at least things aren't getting worse. And the neurologist gave us some latitude to experiment with small adjustments to one of Denise's meds as needed, based on how she's feeling (anxiety, obsessing, etc.). We're grateful that the doses are very low and her symptoms are very mild.

A lumbar puncture (LP or spinal tap) was performed October 26th. This was done to keep an eye on the presence of cocci in the cerebral spinal fluid. Fortunately, the fluid looked clear. So we're optimistic that no cocci will grow when the specimens are in the lab at U.C. Davis. Cocci is slow-growing, so we won't know the results for a few weeks. She will also have an MRI of the head early in November to see the status of the meningitis and calcification of the basal ganglia portion of the brain, two more areas of damage caused by the cocci early on. Prayers, please.

Gracie had her 5th birthday party with some preschool friends. Denise was in the hospital last year for Gracie's 4th birthday, so this party was extra-special. It was a princess party, but some boys came as well (they were knights). Everything's about princesses and Star Wars right now. Maybe we'll have a Star Wars party next year? Cool!

Oh, Denise says that she's more than reached her goal weight. So if you're still praying for her to gain weight, you can stop now. She's also started reading the blog for September 2005. She still hasn't discovered the full story of what happened to her, and it's a long slow process. I'm increasingly glad that I typed all this up, as it's helping her understand, and there's no way I could've remembered it all.

Throat surgery went well today

2006-10-05T20:44:00.000-07:00

Oct 5 outpatient throat surgery went well. It was a dual-purpose surgery. Part of it was cosmetic, and that went well. The other part was a bonus that the surgeon was able to fix after he opened her up. The skin on her throat had attached to her trachea, so whenever she swallowed, the scar on her throat would move quite a lot. It was uncomfortable. And if my understanding is correct, there was also some muscle tissue that should have come together in front of the trachea, but was apart. So the surgeon fixed that as well. I didn't think there was any muscle over the trachea, but her tracheostomy was quite low. And I'm not a doctor, so what do I know? Tonight Denise's scar is already looking better than it was this afternoon. Thanks to our neighbor for driving Denise to the surgery, thanks to the school's Parent Teacher Fellowship for arranging effortless meals and beautiful flowers!

September 2006 Update: Labs improving, Life normalizing, Disneyland family trip

2006-09-30T20:16:00.000-07:00

Here's a photo of Denise at Disneyland, her first time with our kids. You can't see it very well, but her hair's coming in nicely (pinned back under Mickey Mouse ears) and is finally longer than my hair! Last year at this time, I doubted that Denise would survive a few more days. Look at where we are now!

One year ago I had the worst birthday of my life. Late at night on September 17 2005, I received a call after a birthday gathering at our house from the hospital saying that Denise had suddenly taken a turn for the worst. That began one of the darkest periods in her hospital stay and precipitated the transfer to USC on September 29 2005. This year I had the best birthday of my life! On September 17, Denise took me to Disneyland for my birthday. This photo is actually from when we went again as a family a few days later (annual passports are awesome!).

I went back to work this month, and Gracie & Jacob are now both at preschool. What a huge blessing to be able to send the kids to the preschool next to the "big" school I work at! Denise, while gradually improving, isn't capable of staying at home alone with a kid (much less both) for the entire time that I'm at work. By having me and the kids out of the way, that lets her focus on her main job: getting better. And I can't adequately describe how wonderful it is to see her assuming her roles with being a wife, mommy, and holding down the fort again.
A typical day for Denise consists of getting up at the same time as me and the kids. We trade off getting kids ready & making breakfast. She kisses us all goodbye, gets herself ready, and goes off to the city's little gym to do her physical therapy on her own. We found out it was way cheaper to join the gym ($100/year) and check in with a physical therapist every month or so than going to a physical therapy appointment several times a week and paying all those office visit fees. She then paces herself, accomplishing a few tasks each day such as shopping for groceries, paying bills, making some calls, doing a load of laundry, water the lawn, etc. She's feeling good about being able to contribute to the family unit again, and I'm stoked to have her help again! It's also empowering for her to be able take care of some of her own medical-related calls and paperwork. She then has lunch, then it's rest time. She crashes, napping for 2-3 hours. After we come home from work/school, we enjoy some family time and Denise frequently prepares dinner without needing any help from me. Then it's KP duty, bath time, more family time, and kids to bed around 8pm. Denise crashes shortly after the kids. She really wanted to volunteer at my school and the preschool all the time. But she's found out that the stamina just isn't there yet. It's improving, though. So in the mean time, she signed up to be a room mom assistant for Gracie's class. She plans to come in to do special things for Jacob's class as her energy returns, too.

Medical mumbo-jumbo, Lab results:
Based on what I heard at last month's Valley Fever Symposium at Stanford, we have requested an MRI and lumbar puncture. From what we learned, both of these should be performed with some regularity so that increased cocci activity can be detected early enough to take appropriate medical action and extend survivability.
Denise had a very important lab draw in September. While we're still awaiting the results of her titers that measure the concentration of cocci in her system, we got some great news. Get a load of this:
Liver enzymes:
SGOT 28 (within normal), down from 42 in August!
SGPT 36 (within normal), down from 60 in August!
Alk Phos 230, down from 235 in August. Normal is 20-125, but that's WAY down from June when it was at 353. So the trend continues to march toward normal.
Kidney function:
Creatinine is 0.8 (normal is 0.5-1.2). Amazing, considering she had kidney failure twice, she was on dialysis a year ago and we were expecting it to be that way for the rest of her life, IF she survived.
CBC:
All her blood lab results are in normal! Her hemoglobin even went up to 14.1 (normal is 11.7-15.5), so she's definitely not anemic.
Since the liver labs were being used an indicator of cocci status, and since the liver labs are improving, I'm optimistic about the results of the titers that we haven't seen yet.

On deck for the coming month is plastic surgery on Denise's trach scar on October 5th. Also we have important appointments with her infectious disease doctor and her neurologist October 10th. Hopefully there will be nothing of concern to post from those events, allowing us to wait until the end of the month for the next post.

August 2006 Update: milestones, driving, cocci symposium

2006-08-31T23:05:00.000-07:00

We've been enjoying our summer as a family this year, as this picture of Denise's first elephant ride shows. August was a wonderful month, filled with milestones...

Her heart monitor, scale, and some other medical-related equipment was picked up and whisked away.
During her first trip to the dentist in over a year, they found that her teeth looked very nice, and in fact she had less plaque than anyone expected. Particularly nice was that all the vomiting she did when she was in the hospital didn't seem to erode the enamel on her teeth.
The lab results from blood draws are continuing to head back toward the normal range.
We moved Denise's caregiver out and are on our own.
Denise got a referral to see a plastic surgeon and will have her tracheostomy scar worked on in October.
Denise started practicing her driving shortly after the last post and had her driving evaluation today. She's been given the OK to drive again!
Throughout August (as well as the second half of July since the last post), we've been having meals with friends, going to weddings, enjoying concerts in the park, and doing lots of things with the kids as a family. We like having Denise with us this summer!

My nurse aunt & I went to the Sixth International Symposium on Valley Fever at Stanford University August 22-26. Many thanks to the parents from my school that pitched in to cover sending me! Since they only hold this every ten years, I felt very lucky that the timing was right. We made some valuable connections with doctors & researchers that specialize in cocci. I don't recall any doctors having had a pregnant patient that survived cocci in the brain, as it appears Denise had according to the MRI results from her stay at USC. But one doctor that's seen plenty of cocci with meningitis made himself very accessible to us, and was a willing source of information. Also on hand was the doctor who discovered the first effective drug to fight cocci infection decades ago (I thanked him), and another doctor who is the grand poobah of cocci research at U.C. Davis (I met him, too).
What a learning experience I had! I and a presenter (geologist) were the only people there that weren't medical professionals. I felt stupider than I've felt in years, which is a good thing. Stretching is good. I learned a bunch... some very alarming (tops: cocci cases with meningitis frequently relapse within 6-8 years, 30% fatal), some very encouraging (tops: stories of patients doing well decades after cocci with meningitis, a promising new drug called posiconazole up for FDA approval). Some other interesting tidbits:

A major source of kitty litter is from cocci-rich soil in western Kern county, CA.
The military is having increasing problems with cocci infection due to troops being trained in cocci-endemic areas.
The state prisons closest to where Denise used to live (Pleasant Valley Prison in Coalinga and Avenal State Prison) top the prison cocci list, and experienced record reports only half way through year 2006.
Even though Fresno's a highly-populated area in the endemic region, it's mostly paved over (not much dust flying around), so relatively few valley fever cases are reported from Fresno.
Cocci was added to the regulated list of bioterrorism agents (yep... with anthrax & ricin)
My favorite: there's a case of a dolphin that contracted cocci. HOW? Did a dolphin take a stroll through Bakersfield?

Above all, after hearing what the presenters had to say and learning what I did, it makes it even more miraculous that Denise has survived and is improving. Thanks for working on her, thanks for praying for her. I like having my wife back!

One year later, Denise's statement

2006-07-18T21:12:00.000-07:00

Last blog post... sort of. I think that this will be the "official" last post of the Pulling for Denise blog. I do hope to set up a spammer-resistant email list that you can sign up for, so check back in a few weeks. That way you'll be kept up on major developments every once in a while (yes, I'll post them to the blog anyway). I also plan to post some "before, during & after" pictures of Denise. In the mean time, be sure to add your name to the guest map (link is in the column on the right of this blog).

A few people have told me that reading this blog has been like following a soap opera. One person described the Pulling for Denise blog as "a reality TV soap opera with American Idol participation, except that this really matters." Thanks for keeping up. Thank you for letting my wife's struggle be part of your lives for the last year, even as the trials & tribulations have been present in your own lives. I know that the world doesn't revolve around my family, but many of you have made us feel exactly that special during the last year. I wouldn't wish what we've been through on anyone. But it makes me feel better that so many people have let us know that they've found inspiration, strength, encouragement, and in other ways benefited by keeping up with Denise's status, stories about the kids, and this regular guy's reflections on it all. I'm glad that we've somehow been used to be a blessing to you through all this. I once heard somewhere that God uses cracked pots. Yup.

It's been one year... At 12:58 pm one year ago today, Denise went into the hospital. What we thought would be an easy overnight stay in the hospital for observation turned into the harshest eight and a half months our family's had yet. As you can see from these recent pictures, we're having happier times now that Denise is back with us and getting better. God carried us through by touching our lives through all of you. The way I look at it, whether it was working hard through med school and at the hospitals, prayer warfare from near and far, meal prep, child care, running errands, doing home & auto repairs, contributing to the fund, arranging housekeeping, shuffling schedules for me at work, sending encouraging emails, lending a listening ear, or any one of many other things, God has blessed us through you. I thought it'd be neat to type in the names of everyone that's helped us in some way, listed A-Z, so as to give public thanks (the thank you notes are still coming, even for deeds done almost a year ago). But the list would've been endless, and still I would've accidentally excluded someone. So here's one great big "Thank you!"

Statement from Denise... You've heard just about enough from me. Denise wanted to speak at her reception last month but didn't know when to speak because people were always coming and going. Here is what she wrote, which was then printed out for people to read as they had time. I can't think of a better way to wind up her blog than to finally print her own words...

To everyone that’s been pulling for me,
Jesus commands my destiny. He is my commander, Lord, and chief. The night and morning star, my redeemer, my King, my heart’s desire, my brother, and friend. To Him be all the glory. God holds the keys of life and death in His hands, the keys that saved me from perishing. I did not have the will to live but God willed me. Nothing can separate us from the love of God that is in Christ Jesus our Lord.
Before I contracted this disease I had told God I wanted to be his handmaiden; to be His servant and I said, “God just give me the strength for it.” They that wait upon the Lord He will renew their strength… they will walk and not grow weary. They shall run and not faint.
After my battle with disseminated valley fever and surviving it, more than ever I know that God has a plan and a purpose for my life, as he does for all of us a future and a hope. Scripture: Jeremiah 29:11.
Please I want you to keep on praying and petitioning the Lord with thanksgiving, presenting your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.
Through your prayers I have been given the peace that passes my own understanding, and my health and wellness. Because of your prayer offered in faith you made the sick like me well. Your prayers were powerful and effective. God heard your prayers in His holy dwelling place and the prayers of the upright please him (1 Ch 5:20, 2 Ch 30:27). In Mark 11:24 it says, “Therefore I tell you the truth; whatever you ask for in prayer believe that you have received it, and it will be yours.”
You all have shown me love in so many ways. Your steadfast prayer, monetary help, reporting my health, nursing me back to health in the hospital, the doctors who chose my meds and cared about my lack of sleep or my dietary habits… For all the medical pros who do their jobs so very well and who were there at critical times, thank you from the bottom of my heart & my family thanks you, too. You have all shown me love through the darkest shadows of my life. I only peered into the valley of death; Baby Daniel and Phil’s dad walked completely through it and are in a much better place than here. I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you prayed for me, you clothed me, I was sick and you looked after me. I was in the hospital and you came with music, singing & prayers. You read to me. My sisters and brothers, you did this for me (the least of these), and in doing so, Matthew 25 says you did it for the Lord.
Thank you,
Denise Williams
(from her reception June 16 2006)

Milestones: PT, Solo with kids, Vision

2006-07-15T15:20:00.000-07:00

Four quick milestones:
No more physical therapy needed! Yesterday during a physical therapy evaluation, the PT and Denise both felt confident that she could stop going for therapy. She will continue going to the local gym and go about her regular daily activities. In doing so, she will continue to increase her strength, balance, coordination, flexibility, and endurance.
Solo with the kids! This morning Denise stayed home with both kids by herself while I ran some errands with a friend for a couple hours. She said it went very well.
Vision improving! She noticed that she's able to read much smaller print now than a few months ago. She's not sure, but feels like the black spot in her vision is either shrinking or getting lighter. I'd be interested in taking her to a retinoligist again to see if there's any measurable change.
Goodbye scale & heart monitor! A company called Alere provided Denise with a fancy scale & heart monitor that she had to use every morning & evening. After consulting with one of their nurses, it was determined that Denise has progressed enough that she doesn't need to use them anymore.

Neuro & ID appts: Great news abounds!

2006-07-13T06:47:00.000-07:00

I feel lead to put a concern for one of Denise's friends at the top of today's post. Her 33-year-old friend with stage 2 breast cancer is having surgery this morning at 9:15. Her concerns are that ALL of the cancer will be removed, that it hasn't gone into the underlying muscle, that it is NOT in the lymph nodes (MRI shows that it is), that it hasn't spread to any other parts of her body, and that she can get a particular doctor that she's angling for. She's already had to deal with being disabled for all her life, and that's turned her into someone that presses on in a way that inspired Denise to work so hard through physical therapy. So she'll do her part. Please tug God's robe for her, the medical pros taking care of her, and her family. You participated in a miracle with Denise. Maybe her friend will be then next item on our watch list.

After that, it almost feels inappropriate to post so much great news about Denise. But I know her friend doesn't mind. Hopefully the following will be encouragement that from the bleakest of circumstances, great things can happen. So here we go...

Lab results: Tuesday's labs came back showing the titers (used as an indicator of the cocci infection status) moving one step toward normal (I believe she's now at 1:16, for those that dig this kind of stuff). Liver labs also improved markedly (AST 42, ALT 65, Alk Phos 209) and continue to move toward normal. All electrolytes are within a normal range. Notice how that word "normal" kept popping up in all those sentences? Woo-hoo!
Neurology appointment: Here's what the doctor typed into the progress report on Tuesday: "Alert, speech fluent, face symmetric, gaze conjugate. Motor exam is intact, without focal weakness. Gait is symmetric and intact." He said that he sees no reason why Denise can't start driving again. So we're going to start practicing and take her for a driving evaluation. His plan is to keep her on the current doses of her meds for a few more months and then gradually try to taper down as tolerated.
Infectious Disease appointment: Right after the neuro appointment, we went across the street to see the ID guy. He was pleased with Denise's progress as well. Of note was that she's doing well on voriconazole (Vfend) antifungal, which isn't used as much as fluconazole (Diflucan). He thought that the issues Denise had with the vomiting and increased liver problems earlier this year were related to developing intolerance to the fluconazole. He also thought that when my nurse aunt & I go to the Valley Fever Symposium in August, we should share Denise's experience, as it would add to the body of knowledge and might be helpful to the doctors in treating other people with cocci. So I guess I should go to the uniform supply store & buy a white lab coat so I'll fit in (and look sharp). On the other hand, I'm all about casual, so maybe some scrubs would be a better fit.
Proof in the pudding: Denise is improving, and everyone that interacts with her can tell. She's been doing fine mentally, emotionally, and been making tremendous strides physically. About five or six weeks ago we visited my nurse aunt, uncle, and webmaster cousin for an international food fair in Balboa Park, San Diego. Last week we visited again for our anniversary. My uncle noted that a few weeks ago, Denise had to use a wheelchair to get around for the food fair, and last week she was able to walk down & back up steep hills at the Wild Animal Park and she never used the wheelchair. Yay! We joined our city's little gym so she can do her physical therapy locally (and $100 per year for the gym is way cheaper than the $30 copays for PT). One of the trainers at the gym showed Denise where all the PT equipment is and gave her permission to use the stuff any time she wants. She's working hard and increasing in balance, flexibility, endurance, strength, and coordination. At home, she's been doing all her own personal care for weeks, can prep meals, care for kids (she can pick up Jacob, and he's having a growth spurt), and even practicing some low-key dance moves from a video. We used to take swing dancing together and hopefully that'll be on the radar screen again soon. With swing dancing, the basic guy part is easy; that gal does all the flashy stuff to make the couple look good. So for regular guys that don't like dancing (and you don't, right, chaps?), I'd recommend swing dancing as a good way to satisfy your gal's need to go dancing while saving yourself from looking like a doofus. But I digress...
Room search: Anyway, Denise is doing so well that we feel we've accomplished our goal of getting her self-sufficient enough to not need live-in care anymore. So in anticipation of Denise's caregiver moving out, contact us if you have a lead on a spare room for a neat, tidy, well-organized, considerate female. As a bonus, she's got a British accent that adds a bit of sophistication to the household, too.

Potty training update... Jacob is chugging right along. A few weeks ago he'd sit on his potty, pull the catch basin out, pees through to the floor, and then put the catch basin back in. Now he keeps the catch basin in and does his thing. But then a few times he's pulled it out and waved it around, saying "Look! Pee-pee! Yay!" We've been mopping the bathroom floor & walls fairly frequently lately. I think I liked the diaper better. If you've got a worse potty training story, I could use it about now so I can keep things in perspective.

Reception recap, Activities, Blog end & book?

2006-07-01T23:44:00.000-07:00

Here's a picture of Denise & a school parent (and nurse) from the reception on June 17th. Just look at that little smile & raised eyebrows on Denise's face! These two ladies are talking about going shopping together sometime this summer! During the two hour window of time, I don't even know how many people came & went. Some people drove an hour or two so they could meet Denise and talk to her for a few minutes. My only regret from the day is that I didn't get pictures of everyone that came to visit Denise. Her only regret is that it didn't go longer so she could have time to spend with everyone and properly make everyone else feel as special as they made her feel. She wanted to get up & speak, but was very nervous. That was OK, since the microphone wasn't working until the very end, and with people coming & going constantly, there never would have been a good time to address her adoring public. She did write something up, which we photocopied for the guests. I need to retrieve that file from a flash drive that's in my desk at work. Doh! I'll get it and post her words next time.

These are some folks that were strangers until the day of the reception. They'd only known Denise & I from the blog. After talking with them, they kind of made me feel like a hero for doing the blogging and presenting Denise's story. I feel like they're heroes for praying for her even though they had no idea who she was. Oh, and they also provided one of the cakes at the reception, so that weighs in pretty well in their favor. Seriously, though, they and people like you pulled for Denise and supported our family in every way imaginable. The most eloquent words I could ever use would still be way to feeble to express my gratitude.

Speaking of heroes in my mind, the tall guy in this shot is another one. He's a school parent that's also a surgeon at USC. Other than thinking he pointed out that there was still hope for Denise's survival during some of the darkest days, he's a humble guy and doesn't think he did much. But I think he's representative of the medical professionals at Arcadia Methodist, USC University, Huntington Memorial, and Country Villa SNF that worked their tails off, applied their skills, cared for my wife in a personal way, and did everything they humanly could to fight for Denise's life. Thank you to all the doctors, surgeons, nurses & helpers of all certifications, RTs, PTs, OTs, and everyone else.

This is a neat picture of Denise with a bunch of friends from her time at Westmont College. She picked some great friends. How do I know? They've become my friends more than ever and supported me & the kids every ounce as much as they've supported Denise during her hospital stay, that's how I know. And yes, guys, some of these ladies are available!

Activities Galore! This is a great paragraph to be able to write... Since school's been out, not only have we had Denise's reception, but we had a bunch of 4th grade boys at our house for a movie marathon (school fundraiser) and we went to an end of school pot luck for Gracie's preK class. Denise visited the CCU at Arcadia Methodist Hospital (I'm awaiting the picture to be emailed to me) and visited Country Villa skilled nursing facility. We had a test run of life on our own, as Denise's live-in caregiver was gone for almost a week doing house sitting for some friends. She's been sort of a security blanket for me, but somehow we managed to do pretty well during her absence. That stint on our own is another milestone in Denise's recovery. We're stoked! Escrow on my mom's house closed (if you need an agent, she'd very highly recommend the guy from Furstenberg Realty that she used) and she moved into a retirement community very close to us. Denise started swimming again for the first time in almost a year at the city pool and again at the pool at my mom's retirement home. Denise's sister & her husband had their second child (her mom just missed the event) and Denise's dad went to do some hurricane relief. I took Jacob to Disneyland, our whole family went to Kidspace Children's Museum, Gracie & I camped out in the backyard, we've gone to the park, and we went to a Dixieland jazz ice cream social where my mom lives. July 5th is our anniversary (talk about the ultimate wedding reminder... fireworks & barbecue, then I'd better buy some flowers the following day or I'm in the dog house). Actually, we alternate planning little getaways each year, and this year it's my year to plan. I guess that for most people a 9th anniversary isn't usually a big deal compared to a 10th. But after what we've been through, it might as well be a 50th or 75th, as far as I'm concerned. I feel like the last year has aged me a few decades. Denise also started and almost immediately stopped taking a med called Geodon. It seemed to have the effect of boosting the behaviors that it was supposed to suppress. It made her feel odd. Why is this great? It's because other behavior changes were only noticed by others, but she noticed this one herself. Anyway, as you can see, between my family & friends, life has been crammed with activity and my blogging has become more infrequent.

Now this is a difficult paragraph to write, as it involves another person to pull for. We found out during the last week that one of Denise's best friends has stage 2 breast cancer. She's 33 years old, same as Denise. I'd give you a name to associate with the situation, but she asked that I not include a name at this time. Perhaps she'll set up a blog at some point and I'll certainly put a link to it if that happens. She was a huge inspiration to Denise, particularly during the hard work of learning to walk again. Now her friend says she's drawing inspiration from what she's seen happen with Denise's journey during the last year.

Blog end & book... I appreciate that so many of you, in spite of your own trials in your own lives, have been keeping up with Denise's struggle for so long. Thank you for caring, or being addicted, whichever. This soap opera's been going on for almost a year, and our lives look like they're now heading back to normal. I was thinking of ending regular blog postings on July 18, the one year mark of Denise's hospital admission. I brought up to my cousin (the map/fund/email list guy) the idea of starting the email list again (this time, more spammer-resistant). That way you can sign up to receive updates, and won't have to keep checking back on the blog, only to find nothing new. But if something noteworthy happens, good or bad, you can still get word of it through email (and yes, I'll post it on the blog anyway). If we can get that email list going again, I'll put a link to it in a post.
And another suggestion that seems to come up from time to time is publishing this blog in a book form. Even though this blog will probably stay online and anyone that cares to read it can have access to it for free for year & years, I guess that there's always the possibility that the Google/Blogger people might take it down. So maybe a hard copy version might show up on the radar some day. Anyway, part of the usefulness of this blog has been the interactive nature of it. Your ability to post comments has educated me, encouraged us, increased the quality of Denise's life, and quite possibly played a part in saving Denise's life. So if we ever do publish a book, there are definitely some comments that I'd like to include. If you can think of a comment you posted that you wouldn't want in a book, please email us to let us know. Denise might want to kill me for writing some of the things I've written, though. So I guess it's kind of a gamble, huh?

No paracentisis, GI appointment, Neuro med tweaks

2006-06-16T23:55:00.000-07:00

The reception for Denise is tomorrow! The address listed in the previous post is for the school's front office. The gym is on the opposite side of the campus, so be sure to drive around the block to park.
I was putting together a display board with some photos and just found this one that I forgot to post from about a month and a half ago. I remember that when Denise was in the hospital and I took pictures of her, I had to search for one that made her look good (most were never used). Notta problem anymore, now that she's looking healthier as the weeks go by.

It's very late & I'm pooped out, so here's a quick summation of what's happened this week.
The fluid draw from her ab that was supposed to happen Monday never happened. The ultrasound showed no pockets of fluid. Denise was disappointed, as she was really looking forward to losing the tummy. She's slightly above her target weight and her tummy is the only place that's collecting extra weight. It's not how she'd like to look, and people are always asking her if she's pregnant when she's out & about. You'd think that'd be a really touchy subject, but she's taken the questions in stride. Anyway, fast-forward to today's appointment with the GI doctor, and not finding fluid to remove is a positive thing. The GI doctor said that the lack of fluid is very good, as it indicates (in the context of increasingly favorable liver lab results... I'll try to post numbers soon for you hep people out there) that the liver is getting better. He noted that her liver is smaller as well. Still enlarged, but smaller. His best guess is that her tummy is redistributed fat tissue that will go away over time as her activity increases. Interesting stuff explains all that, but I'll save it for another time.
The neurologist appointment resulted in the addition of one more drug (Geodon) in very small doses. Upon running the concerns mentioned in the previous post by the neurologist, he felt that this drug would help. The pamphlet containing the list of cautions & possible side effects is a minor Russian novel. We'll see what happens when we throw that one into her neuro drug regimen of Trileptal, Lexapro, and Risperdal (all in very low doses).
And some other stuff...
School's out for the summer, so now I have more dates open on which to schedule my nervous breakdown. Yay! I've been looking forward to it for months and can't wait for it to happen! With the end of school also came a stellar 8th grade graduation ceremony. Denise & I were presented with a very generous check for Denise's fund, the money collected solely from junior high fundraisers. Every year the kids use a chunk of funds for their special activities and also donate some to charity. This year, we were the charity. I was so floored that I felt like saying something, but couldn't. Choke. It was all a blur. The student that gave us the check was saying something, to me, but I was in a fog and couldn't grasp it all. It's probably what your dog feels like when you talk to it. So for anyone that was there that night that's reading this, thank you. To the students, I think back to my level of consideration for others, smarts, talent, and every category of maturity when I was in junior high, and compare it to what I see year after year in you, the young men & women from my school, and you always blow me out of the water. To the parents & everyone I work with, I see where the kids get it from. I've relied on you all more and gotten to know more of you on a deeper level because of what's happened during the past year. What a mega-family to be a part of!

Reception, Paracentesis, PCP, Neuro, Gastro Appts

2006-06-12T09:12:00.000-07:00

Celebration of Life Reception for Denise Williams
That's the name my friends at school came up with, and I can't think of any more appropriate thing to call it. We sure hope you can come greet Denise over some punch & cookies on Saturday June 17, 2-4pm in the gym at Pasadena Christian School, 1515 N. Los Robles Ave. Pasadena CA 91104. Whether you know Denise well, have never met her before; whether you fit into the friend, family, neighbor, or medical pro category, we'd love to see you and say "thanks" in person for the part you played in getting her through to where she is now. If you haven't seen her for a few months, you will be amazed! Enough people have asked about where to send a card if they're too far away to make it to the reception, so here's an address:
Denise Williams 2328 Oakhaven Drive, Duarte CA 91010

Physical progress
Denise is back to her normal weight, and her strength, balance & endurance are markedly better as each week goes by. She sometimes has a "tired" day, but I think she deserves some slack, right? She's regularly been able to bathe herself, clean her own wounds, prep meals, and many other things. Reading is spotty, but she was able to address thank you notes from Jacob's birthday party. It's wonderful to see her able to increasingly accomplish things on her own, relying on her caregiver less and less. She's not at the point that she should be alone with kids yet and it's difficult for her to do many cleaning tasks (and so her caregiver is our saving grace over & over). But the great thing is that even though the kids will both be home for summer (no pre-K, no day care), I'll be done with teaching in a couple days and home for the summer to help. Then in September, both kids will be in preschool. I can't believe how much progress Denise has made since coming home about two months ago. I can't imagine the progress that she might make over the two & a half months of summer. I remember being told back in September that I need to be her biggest cheerleader, pointing out every accomplishment and getting her to buy into the notion that she could survive. I'm still playing the cheerleader, and am so thankful that now it's in the much more positive context of getting back to normal, not just fighting to pull through.

Appointments on deck
It's a big week for appointments. She goes this afternoon for a paracentesis to draw fluid off of her abdomen (first time in months). We think it's been ever so gradually diminishing. It should be interesting to see what happens after this fluid draw. Then later this afternoon she visits her PCP (primary care physician) for a status check.
Tuesday she has an appointment with the neurologist. He remarked during the last visit about how much Denise had improved since the prior visit and reduced one of her meds by 50%, giving us instructions to give the other 50% if we see manic (interpreted to be pre-seizure) behavior. I didn't see anything as blatant as what I'd seen before. But the caregiver and I have noticed some slight behavior changes that seem to correlate with the change in meds. Part of me wonders how much of this is just Denise getting stronger, wanting to take on the world after being down for so long, less doped up on meds, and getting back to normal. Another part of me is wondering if some of the behaviors are things that meds could help to even out (not for my convenience, but for her functionality & happiness). And if that's the case, what is a reasonable balance between being oneself, free of meds, and being medicated but not having all of one's own personality? I'm not one to want to throw medication at every physical or emotional difficulty that comes along. But I do wonder (and I'm sure Denise wonders about me). :O)
Friday she has an appointment with the GI doctor. I was going to post the info from her last appointment, but it was (and is) still filled with speculation until the latest liver labs come back. The GI doctor and ID doctor probably need to huddle first, then I can post some specifics. The info from the GI doctor was just relating to what can be done in the event that the cocci goes on the move again and is manifested through liver trouble. I've received a few more emails asking why Denise isn't going to an actual hepatologist for liver things. Apparently the gastro and liver problems and functions could be interrelated. According to liver lab results, her liver function bounces around, but is within an acceptable range. If things get worse, then a liver guy will come into the picture. Until then, the GI doctor seems to be well-versed to deal with Denise's level of liver function.

Thanks, Seminar, Politics, Potty Training
Thanks for the tremendous response to the last post. We were given a mattress by someone from my parents' insurance company (give the good folks at Tom Romano State Farm in Alhambra CA a chance if you're in the market). People came out of the woodwork to offer help for Denise's reception (there's always room for more cookies, if you want to bring any). And here's a shy but heartfelt thank you for the swell in contributions to Denise's fund. Also, thanks for all the help for Jacob's birthday party! We were even blessed to meet some brand new friends that have been following along for months. Thanks also for all the help with getting my mom's house ready to sell. Escrow should close later this month and she just moved into her retirement home last week. She'll get used to having someone else doing the cooking & cleaning sooner or later.
I'm planning on going to the 6th Annual Symposium on Valley Fever that's put on by U.C. San Diego, being held at Stanford University near the end of August. It's pitched toward medically-inclined folks. So I'll be way out of my league. Then again, its good to be a small fish in a big pond... it leaves room to grow. Hopefully some of the brilliance of the presenters will rub off on me.
I received a pretty neat email a while ago from a total stranger that had been following Denise's story. He said he feels like this blog has been better than a soap opera, was encouraged by my love for Denise (notta problem... she's easy to love), thought I did a great job of communicating, even being funny, under the stress, and really feels like he knows us. He wrote jokingly, "I just can't tell: Are you a Republican or a Democrat?" I had to chuckle. I wrote back that I shouldn't answer that one because I ran roughly a 50-50 chance of giving the wrong answer. Then I might all of a sudden become a jerk in his mind and possibly even lose his support for Denise (I say that with my tongue firmly planted in my cheek). Anyway, the reason why I thought his email was so neat was that it made me think of how many people from different backgrounds (I'm talking not only political, but faith, socio-economic, educational level, racial, age, mental & physical ability... on and on) have pulled for Denise together. It also encourages me that people perceive that Denise's situation is the obvious focus of this blog. It ain't about me. I'm just her publicist.
That said, let me tell you that Jacob has started potty training. School's end and Jacob's end are probably the biggest reasons for the long gap in blog posts. He's running around half the time with no pants on. Hopefully he'll outgrow that by the time he gets into a career. Anyway, the potty we have has a collection basin that's removable via a pull-out handle on the front. Whoever designed this thing didn't take rascals into consideration. A couple weeks ago, when I first sat Jacob on it, he pulled the basin out, THEN promptly relived himself. Messy floor. He did that trick again and again, gleefully, I might add. I was just about ready to get the duct tape out and tape the handle to the seat. Then he stopped for a couple weeks. Well, last night he started the pull-out-the-basin trick again. At church yesterday the sermon was talking about rest. Denise & I leaned over to each other: "Easy for him to preach about; he doesn't have preschoolers at still at home anymore!" Just think: Denise has been in the hospital for most of a year, and shortly after coming home, gets to help with potty training. Yup, she's assuming her role as mommy again. Things are getting back to normal.

Drivers, Mattress, Reception, Fund

2006-05-24T10:42:00.000-07:00

The details of Denise's GI appointment from last Friday are still being processed into layman's terms for me to understand and pass on to you. In the mean time, here's one big call for help. I'm usually the "go-to" guy for things, so this is more than a little humbling. Here goes.

Drivers needed:
We are looking for people that would be available during the daytime to drive Denise from Duarte to Pasadena for appointments. Lunch will typically be in it for you, and of course, we'd kick in for gas money, take care of parking, provide a clear map, and send along relevant medical info for the doctor (so you won't have to memorize this blog). Denise is not able to drive and her caregiver is working on a license, but that'll be a while in coming. At this point we're down to 2 appointments per week, so if 8 people could throw their names into the hat, that'd be about once a month for everyone. In an ideal world, we could piggyback the appointments. But specialists are usually in their offices one day per week, and too many appointments in a day exhausts Denise. My aunt the nurse has been driving up from Escondido so I don't have to miss a day's work (& pay) to take Denise to her appointments. She's been generous with her time & talent (and gasoline) far beyond our wildest expectations, but she has a life, work & family, too. Just hoping to spread out the workload a bit.

Mattress needed:
We are looking for a used, yet clean, full or double (futon-sized) mattress for the kids. Currently they're on a futon mattress that's pretty worn down and hard. It's a temporary thing until Denise doesn't need a live-in caregiver anymore and the kids have their own rooms again (with twin mattresses to take up less real estate). So we were trying to borrow first and not buy. If you have one available, please contact us. I can pick up.

Reception help:
The reception for Denise is Saturday June 17, 2pm - 4pm at Pasadena Christian School. I jumped into planning a reception for her, not thinking that I've already got my hands full (and things are squishing out from betwixt my fingers, like Pla-Doh). As a result, I envision it simple for the miracle gal: cake, cookies, punch, balloons, people that have pulled for Denise. If you're a cookie-baking sort, balloon-inflating pro, or have a mean punch recipe, and feel like helping out, let me know.

Williams Family Fund:
The following is an email from my aunt, the nurse. She wanted me to put this in the blog. I think she's holding for ransom the layman's details of Denise's GI appointment from last Friday until I post this...

From the nurse aunt:

On 4/23 this was one of the comments on the blog in response to the details of where Phil's Dad requested donations be made.
anonymous said...
Phil,
You all are in my prayers and while I know those are worthy organizations (and my own father benefited from the Salvation Army ministry as a poor child growing up in Pasadena), how would one go about donating to another of your father's favorite causes, namely the Phil Williams Family Fund?
Please post the info again. Thank you. A sister in Christ.

I'm Phil's nurse aunt. Phil won't ask for help but I will for him. Just because Denise is home doesn't mean the costs of an illness as severe as what Denise had are over. The bills are now coming in and will continue. As will the copays for PT and visits with a long list of specialists and the need for continued caregiver services at home and childcare. Dick told Phil one of the reasons he held on and went through more chemo was to see Denise get home. He did that and I know he would want to see Phil and Denise get some well needed assistance with these costs. Just like the loaves and fishes, I've seen God take little amounts and do great things. I am asking that each of us give a little in Phil's Dad's name, Dick Williams, to the Williams Family fund to assist with the ongoing costs of this illness. I know Dick would have liked that.
Yours in Christ,
Nurse Aunt (Jackie)
Here's the link: Williams Family Fund
Make check payable to Diane Evans, indicate "Williams Fund" in the memo. Mail to:
Attn: Diane Evans
Pasadena Christian School
1515 N. Los Robles Ave.
Pasadena CA 91104
Or use Paypal to send donations to pullingfordenise@yahoo.com

124 pounds, Month-old med data, Memorial, Cadillac

2006-05-18T11:11:00.000-07:00

Here's a picture of my 124-pound wife & I from my school's open house on May 11. Right now you may be thinking, "Phil in a suit? A miracle!" Fair enough. But we all know that Denise is a walking miracle, several times over. People were stoked to see her at the open house, and looking so well to top it off. In the past it's been easy for her to feel like she's in my shadow when around people that I know. Not lately, though. There were more people interested in seeing Denise at open house than people interested in seeing my room (or talking grades... whew!). We also went to a fundraiser dinner for my school the next night. Again, Denise was greeted by endless well-wishers that were surprised and happy to see her.

I'm sorry it's taken so long to post things. This information is from about a month ago. Life HAS been that busy. Today marks ten months since Denise went into the hospital, about a month and a half that she's been home, and one month since my dad passed away. Much has happened in that time, and there's lots still to do. My mom's house went on the market on Monday, open house will be Sunday (anybody looking to buy in Temple City CA?). It and the grounds look great, thanks to some fine people from my school (and their friends) that pitched in last-minute to clean things up. Long post coming, so make yourself a sandwich, grab something to drink, and then sit down to read this...

GI & cocci status:
As of the last we heard, the liver biopsy was not growing any organism. She has a GI appointment tomorrow. Her last GI appointment in April was interesting. The doctor thinks that the cocci is still there and just hasn't grown yet. He thinks it could take months to grow. Doesn't that sort of send a chill up you, too? He thinks the current antifungal med (voriconazole) is working though, due to how good she looks and how well she's eating. He wanted to let the wound where her feeding tube was heal on it's own, because stitching it up would close the infection inside. Denise's caregiver is doing a great job of keeping on top of the wound care (and everything else). There is still ab swelling (accounting for much of her weight), but we still think that it's ever so gradually subsiding. The GI doctor didn't want to do a paracentesis and risk any infection. We'll see what he thinks at the appointment tomorrow. Some have emailed privately to ask why Denise isn't being seen by a hepatologist. That is a possibility, but so far the big boys think that the liver function is bouncing around within a reasonable margin. If things get really whacked out, then she'll get bumped up to seeing a hepatologist. Yes, *a* hepatologist, not *an* hepatologist. See, here in the good ol' U.S. of A., we use & hear that beginning "h" sound for many words, eliminating the need for "an" in front of most "h" words (smirks to an english teacher friend, who would write an history, but never eat an hot dog or pound nails with an hammer). But enough of that...
ID & cocci status:
From an infectious disease standpoint, there was some good news a couple weeks ago. The titers (measures of concentration of cocci) did not increase. That's an encouraging sign. The ID doctor said that apparently the cocci that did show up in the liver a while back was dead, and would assume the same for the cocci in brain. Again, encouraging. He added that the granulomas (oversimplification: defense mechanism against infection) in Denise's body might attest to her strength, indicating she's strong enough to mount a defense. He's comfortable having me take Denise to get regular blood draws at a lab, and bringing Denise in for ID appointments less frequently, as long as the titers & liver labs don't show anything alarming.
Neuro status:
The neurology appointment was also about a month ago. The neurologist was pleased with Denise's improvements. He halved one of her meds (she was already on a very low dose) and admonished her to stay out of the sun, as that can cause a rash with the med. He also wrote her a note to try to get us off the hook for her little TV shopping spree she had during that manic phase in March. It seems standard that the TV shopping outfits charge a 15% restocking fee. With a doctor-signed letter explaining what happened, the companies have been very nice about not sticking us with those charges so far. He's not sure what to make of the effects that the cocci infection is having on the brain yet. For that matter, none of the doctors can tell us what to expect, since records of survivors of what Denise had, under her circumstances, are nonexistent. She is the test case and the pros are learning from what happens to her as we go along. Nobody can tell us if her survival will be measured in months, years, or decades before (or if) the cocci flares up again. So that's been a little frustrating to me at times... until I remind myself that none of us knows for sure if we'll be around tomorrow, or in an hour for that matter. So every morning that I wake up and find that Denise is still alive and feeling well makes for a pretty good start to the day.
Leaps & Bounds Dept.
Denise went on her first errand with her caregiver yesterday. They took the free Duarte city bus to get some groceries. That was a major help, and Denise was proud that she was able to add that task to her contribution to running the family. I sure appreciated the surprise of her calling and telling me not to worry about stopping for groceries on the way home from work. Even though she gets around the house by walking now, she still needs the wheelchair for longer trips. There were only wheelchair ramps at a fraction of the places she needed them, none leading up to the bus stop, and the driver overshot the stop and then didn't lower the wheelchair ramp for Denise. Yeah, there are a few kinks to work out. When I was in college earning my child development degree (no, my degree's not computer-related... now it's scary that I'm a computer teacher, huh?), one class dealt with disabilities. The professor had a couple wheelchairs and gave us the assignment of spending as much of a typical day in one as we could. That assignment was an eye-opener for me (and very handy years later when I had my knee reconstructed). So even though I'm not the one in the wheelchair, I can understand Denise's frustration fairly well.

Memorial:
As I said earlier, my dad's been gone a month. Thanks to everyone that came to the memorial service. It was one of the best-sounding memorials I've ever been to. I think I need to start hanging around southern gospel quartet crowd, too, so that when it's my time for a memorial, it'll sound good. The slide show of my dad was outstanding and memorable, and several people asked about how to get a copy. A friend did it for us as a courtesy, and he sure would appreciate your business, either by ordering my pop's tribute DVD or giving him a fresh business project. You can contact him by visiting Top Hat Video Productions. He did a bang-up job (in a good way). I'm truly sorry that I didn't get to spend some more time visiting with some people that I haven't seen in years. On the other hand, it was awesome to meet so many of my dad's friends for the first time, and hear almost all of them say that they were following Denise's situation. The world got a little smaller that day. I'm sure I'm forgetting something or someone worth mentioning, but that day (and the days before & after it) has been a blur, and my mind is still swimming. The interment on Monday at Riverside National Cemetery was not what I was expecting (my great uncle's interment will happen at the same cemetery tomorrow). The staff was pleasant (I thought that the groundsman that fastened the marble plate over my dad's niche was especially respectful & the least "business-like"), but overall I was a little disappointed. There is apparently a shortage of military personnel (I saw none that were active), so taps was played through a little speaker by pressing a button (no bugler) and there was no rifle salute. The flag was already folded at the memorial service, so nobody was needed for that honor. When my brother & I set my dad's ashes into his niche in the wall, there were some very loud walkie-talkies squawking constantly from nearby maintenance vehicles, about everything from discussing the backlog of guests, to directions about where to deliver sprinkler heads. Also, there was plenty of noise from the busy boulevard just on the other side of the wall. Burial with military honors was nothing like in the movies.

Cadillac:
After the interment, my brother, my dad's life-long friend and I went to pick up a car that my great uncle wanted to go to my brother. It's a 1976 Cadillac Eldorado convertible, runs & looks great. It's over 5,000 pounds of 9 MPG Boss Hogg car, but blue, and no bull horns on the hood. Yet. Gracie & Jacob played house in it. Now that the car's out of my great aunt's garage, my great aunt has enough room to play tennis in there if she wants to. The car has a leaky gas line out of the tank, so we didn't want to drive it like that, gas prices being what they are. Fortunately, my brother had AAA and got a free tow from Riverside, straight to our house. Being that it needs some fixing, it'll stay with us until my brother can drive it back up to Oregon. In the mean time, that baby adorns most of my driveway. I personally think that I've got the coolest-looking house on the block, thanks to that car. I hope to drive Denise & I to my school's graduation ceremony in it. I've also been borrowing my dad's old car (all of us plus Denise's caregiver can fit into it), so my neighbors probably think I'm opening a used car lot.

121 pounds, Dinner date, Open house...

2006-05-10T21:06:00.000-07:00

I've been getting quite a few emails asking if Denise is OK as the days go on. I can't believe it's been almost two weeks since I last posted. I've been swamped between dealing with things related to my dad's death, helping mom clear out/clean up/sell the house, and some school events. By the way, mega-thanks to the people that showed up for a workday at my mom's house that was planned last-minute. A tremendous amount was accomplished! My uncle's in town now, helping my mom with the rest of the items on the to-do list.

I hope to post some fairly significant developments with Denise (I'm a couple weeks overdue). Mostly positive stuff, fortunately, but a little lengthy and technical for posting tonight. I'm wiped out. She does weigh 121 pounds, and we think that the ab swelling is going down as the weight is going on. She's walking around the house, uses the wheelchair for longer distances. We finally went on our first date since she came home from the hospital. We went to a couple places so she could pick out a suit for me (the third suit I've ever owned... I try to limit myself to one per decade) and then we had a wonderful dinner at McGrath's Fish House, where she ordered lobster for the first time ever!

Among the aforementioned school events is my school's open house tomorrow night. Denise will visit Gracie's preschool classroom and then make it over to the K-8 side of the school to hang out with me in my classroom and schmooze a while. If you're in the area (and particularly if you can't make it to her reception on June 17), maybe you could swing by my school and visit her in my classroom (the computer lab). And if you do, please pardon the lack of flashy decor in my room... I've been a little too busy with other things to decorate. Click here for a map to my school.

Some friends & family have requested the following links, so here they are:

Map to my dad's memorial service
Online obituary & guest book from Riverside Press Enterprise
Entry at U.S. Navy Memorial web site log book (his photo's pending)

Save some pull for my mom over the next couple days. It hit me the other day that not only has she lost her spouse, had to downsize, sell her home (goes on the market on Monday), move into a retirement home, and do tons of paperwork... But gardening & culinary things are her hobbies, and she will be going to a place without a garden to tend & a kitchen to cook in. On top of that, Mother's day is sandwiched between the memorial service on Saturday and the interment ceremony at Riverside National Cemetery on Monday. I guess there's never a good time for any of this stuff, but the sting has got to be particularly nasty right before & after Mother's Day.

Reception for Denise June 17, Pasadena CA

2006-04-28T12:12:00.000-07:00

Here's your chance to meet the gal you've been pulling for!

We're officially welcoming her home!

Reception for Denise!
Saturday June 17, 2006
(afternoon... specific time TBA)
Pasadena Christian School Auditorium
1515 N. Los Robles Ave.
Pasadena CA 91104

The "Oh no... when is something going to go wrong?" feeling is diminishing. That Denise is still alive, improving, and home is something to celebrate. Thank you to all the people that worked on her, cheered her on, prayed for her, and in all ways supported our family through her hospital stay. We hope to see you on the 17th.

Picked up Jacob, Another organization, 100,000 hits

2006-04-26T21:05:00.000-07:00

Things are still crazy-busy for me, and tomorrow I hope to have the time to post the details of some recent medical developments with Denise. But here are a few bits of good news for now:
Today Denise was able to get down onto the exercise mat on the floor and back up again unassisted. A couple days ago she picked Jacob up out of his booster seat, and today she was able to pick him up off the floor and hold him in her arms for a short time. All of these things are major steps for her. And not to brag, but today this blog crossed the 100,000 hits mark (the counter's way down at the bottom). Thanks for caring enough to keep checking back on Denise over the long haul.

ADDENDUM: My mom would like to add City of Hope Cancer Research Center to the list of organizations to consider donating to in memory of my dad (see the previous post for the rest).

City of Hope
1500 East Duarte Rd.
Duarte CA 91010
(626) 256-4673
They have an option of giving a gift in someone's name that includes a card:
Click here to see how that works.

Memorial service info for my dad...

2006-04-23T14:55:00.000-07:00

Sorry for the delay in posting. My dad's hospitalization, death, and related "business" has kept everyone busy. A few weeks ago my parents started the process of getting into a retirement facility. So my mom, in addition to losing her husband of 36 years and having to plan a memorial, is also having to downsize immediately in prep for putting their house of 35 years (there was enough stuff in the garage to prove it) on the market and tie up loose ends in order to move into the retirement facility. My mom says she couldn't have accomplished anything without help from us, my brother's family that drove down from Oregon, Denise's caregiver, my dad's long-time buddy that drove down from Mt. Shasta, my nurse aunt's family, and some great neighbors with pickup trucks that were able to haul stuff off.
I had the week off from work for Easter vacation, and had scheduled lots of appointments for Denise. Those were loaded with encouraging news, and I'll relate the specifics in another post. We postponed Jacob's birthday party. Even though my dad wanted Denise & I to go ahead with it and carry on "business as usual," we didn't have the time or emotional fortitude to throw a party yesterday.

Memorial service for Dick Williams
Saturday May 13, 2006
10:00 AM
Ontario Church of the Nazarene
1311 West 5th St.
Ontario CA 91762

Quite a few people have asked for my mom's address, so here it is.
Pat Williams
5332 El Monte Ave.
Temple City CA 91780
626-442-1794

Those of you that knew my dad well will not be surprised by him not wanting anyone to "waste" money on flowers, preferring that you contribute the money to one of his favorite organizations to make a lasting impact instead...

Camp Eagle Rock/Inner City Ministries
3960 Prospect Ave. K
Yorba Linda CA 92886
(714) 854-9300

Salvation Army
615 Slaters Lane
P.O. Box 269
Alexandria, VA 22313

National Rifle Association
11250 Waples Mill Road
Fairfax, VA 22030

U.S.S. Hornet Museum
P.O. Box 460
Pier 3, Alameda Point
Alameda CA 94501
(510) 521-8448

Dad passed away this morning

2006-04-18T11:20:00.000-07:00

I regret having post that my dad passed away this morning, officially pronounced at 8:25am.

I rejoice in more, though: He died with no suffering or struggling, peacefully slipping from sleep into eternity. My brother & sister-in-law were with him, so he was not alone. He's probably singing with J.D. Sumner & Jimmy Blackwood & a bunch of his other quartet heroes right now. The memorial service will probably be the morning or afternoon of Saturday May 13 (in classic Dad fashion, on a date & time that doesn't interfere with a quartet convention, concert, or the opening of any of the major hunting or fishing seasons).

My mom's the one to pull for today. I was convinced that Denise was going to die a few times. As abysmal as I felt in just thinking my spouse was going to die, my mom's crossed that line and must feel worse. The worst day of her life, no doubt.

I'm still good with all this. Everything got said, no regrets in the relationship, he was happy to be visited & called by so many friends (and hear the emails), and he told my brother & I about any loose ends to tie up for him. Nothing left to worry about. The last time I asked him if he was scared, he still said "Nope." All this pours new understanding into the phrase, "It is finished."

He told a friend (and the other day also told Denise) that he only did the chemo because he wanted to be around long enough to see her get better. I'm glad that he got to accomplish that. Today marks nine months to the day that Denise started her hospital stay.

Dad sedated, Last hours?

2006-04-18T07:40:00.000-07:00

My dad had to be sedated (Ativan, just like Denise) around 1am or 2am this morning. He slept most of the day yesterday but he became disoriented & anxious yesterday evening. It reminded me of Denise before she had her seizure. He was not connected with reality, fixated on distances, measurements, angles, tolerances, positions and directions. At one point when the nurse and I were moving him, it sounded like he was saying a few things in Hebrew (he was teaching himself a few years ago; he wasn't speaking in tongues). He started to pull things out overnight. He is currently breathing about once every 20 seconds and not suffering or in any pain. My brother, sister-in-law, a boyhood friend, and a quartet friend rotated shifts with him overnight so he wouldn't be alone. I haven't talked to the doctor or nurse, but my feeling is that these are the last hours. My mom's been called and I'm leaving for the hospital right now.

Dad expected to live days

2006-04-16T16:38:00.000-07:00

I know that the focus of this blog is Denise. But for the next few days I will also be posting updates about my dad, since so many of you that have been praying for Denise are friends of my parents. We've been getting some harsh news about my dad since the last post. Today we learned that his life expectancy is being measured in days, not weeks or months. My mom's setting up hospice care. My brother and his family came down from Oregon with their kids the other day. Among the cancer tumors he has, the ones in the lungs are causing increasingly labored breathing and discomfort. In talking to the doctor about what to expect from here on out, I felt like I was back at Arcadia Methodist, discussing Denise (respiratory inefficiency, labored breathing, irritation & coughing, morphine, panic, Ativan sedation, coma, no suffering, death caused by respiratory failure). He's able to talk and is in relatively good spirits, still trying to square away business to take care of my mom, all done with a "matter-of-fact" attitude. He also has a "see you later" attitude. Interesting, considering that today's Easter, and our belief in the resurrection of Christ is what gives us that "this ain't all there is... see you on the other side" hope. I'm doing almost disturbingly well with the situation. Part of it is that my dad's attitude is comforting. Part of it's that our faith is comforting. And maybe part of it is that I'm just so used to dealing with Denise's situation for so many months that I'm numb to it and can deal with it almost too calmly. The abnormal has become normal.
I learned from the darkest days of Denise's hospital stay that people in general are pretty ill-equipped to deal with pain, suffering, and death. I know that I never knew what to say, so would generally not say anything to someone that I knew was going to die soon. But I'm confident that my dad would rather hear or read awkward words from his friends & family than none at all. I don't see a link on Kaiser Hospital's web site for sending email to a patient. If you want to send an email to my dad, I will print it out and take it to him to read, just as we had set up for Denise. Email him at dpwilliams7@yahoo.com. If you send an email, please make it personally directed to my mom and/or dad. Please do not forward anything to them. My time is already filled with business relating to Denise, and 99% of forwarded material is either a hoax or something we've already heard before.
On the very positive side, last night my dad said he'd rather that we go to church than rush to the hospital first thing this morning to see him. So we went to church. Among the songs we sang was "In Christ Alone," which is a favorite of Denise's & mine (we had the lyrics taped to the wall during her entire hospital stay). Since EVERYONE goes to church on Easter, lots of people that had been pulling for Denise got to see her for the first time today. Later, Denise & her youngest sister had a great visit with my pop at the hospital. They sang & had good talks.
And last night was neat, in a bittersweet way. One of my dad's friends came by for a visit and told me that during the summer, they had talked & wept many times about Denise. My dad's friend said that my dad decided to go ahead with a couple of chemo treatments, even though he didn't really want to. He wanted to be around long enough to see Denise get well and leave the hospital. That he did.

Getting stronger, Dad in hospital

2006-04-14T21:57:00.000-07:00

I know that this blog is "Pulling For Denise" but there are a couple other people to pull for mentioned tonight. I hope you don't mind. First off, let me tell you about good things with Denise.
Denise continues to improve. She's a little sore, but only because she's trying to work out with more & more weight and range of movement. Yesterday she helped prepare two meals. Yum! She's also having a much better time at home than in the hospital. I heard her walking around just a few minutes ago. It's weird how I got used to the sound of her gait before getting sick. Now when I hear her walk around, it sounds like a stranger's in the house because I'm not used to her "new walking sound" yet. But I'm glad to hear it, just the same. We've got a whole bunch of doctor appointments lined up for this coming week. So much for a relaxing Easter vacation, huh?

I took my mom & dad to emergency this afternoon and my dad was admitted to the hospital tonight. Apparently he's got an infection and they need to do blood tests and keep a good eye on him for the next couple days in case he goes into septic shock. Last Sunday he told me of pain in the hip area. I badgered him about calling his doctor, but he didn't think it was necessary. He only mentioned general aches to my mom, and he didn't say anything to his oncologist when he went for a chemo treatment on Monday. Yes, he's trying another round of chemo. Apparently one of the drugs that he did respond to (5FU, I believe) was not manufactured for a period of time and only recently became available again, so they're going to try it on him again. Anyway, today he had pain in his lower right back to the point that his doctor wanted him to go to emergency. As of the last I heard when I left tonight, there were no hospital beds available at Kaiser Hospital, so they were planning on keeping him overnight on a gurney in the emergency section.

I feel compelled to mention some sad news concerning extended family members that've really been pulling & tugging for Denise. Immediately after posting the last blog entry, I learned that my great uncle & aunt from Washington (the great uncle that flew down here a week or two ago when my other great uncle died) had just lost their daughter. Imagine that... losing your brother one week and your daughter the next. She'd been battling illness for decades and had been in & out of the hospital almost too many times to count during that time. I am reminded of something I heard from a friend that said parents are designed to do lots of things, but burying their children isn't one of them. I thought of how devastating a feeling it was to lose baby Daniel back in July, and can't help but think that it must be even worse to lose a child that you've gotten to know for several decades.

So a little extra pull for some family members aside from Denise would be appreciated right about now.

PCP appointment, Watch ascites, Jacob's 2

2006-04-11T20:34:00.000-07:00

Jake's two years old today. Here's a picture of Jacob with cake frosting on his face, and a big smile on mommy's face. Later this evening, Jacob came pitter-pattering into the room, wearing that wig that Denise has on her head. I'd post a picture but I'm still traumatized. Oh, the birthday party theme is now changed to trains. That was on clearance sale but the jungle stuff wasn't. Easy choice. I thought perhaps Chinese food would be appropriate for a railroad theme.
But Greek food won out. Why? I figure it's because she was in the hospital during the Greek festival last September and she missed out. Makes perfect sense to me.
Denise's appointment with the primary care physician was productive. He wrote the necessary note to get Denise declared disabled. That'll open the door to some services if needed. He also wanted us to see the GI doctor because the feeding tube wound hasn't closed up yet. Also, we need to keep an eye on the ascites (fluid buildup in the tummy area).

PCP appointment tomorrow, Disability declaration

2006-04-10T21:26:00.000-07:00

Sorry for the long pause between posts. Been busy, but mostly with good things. We've been trying to get Jacob's birthday party all planned, and just tonight we're thinking of switching the theme from jungle to trains. Part of this is due to Jake's sudden fascination with trains. Part of it's due to not being able to decide what type of "jungle" food to serve... Thai, Filipino, Vietnamese, South American? Too many places with jungles have great food, so it was too hard to decide. Now I'm scratching my head and wondering, "What's train food?" So we might be returning the jungle props that've been loaned to us. Now if anyone has train props we can borrow for the party, please contact us and stand by...
Jacob's birthday is tomorrow, April 11. But the party's April 22, and that happens to be Denise's birthday, so we've got to rush. Trivia: Denise and Jacob were both born on Easter of their respective years of 1973 and 2004. I don't think either of them will have their birthdays fall on Easter for several more decades. Anyway, Denise didn't want to do anything to take away from Jacob's birthday bliss. So I'm getting the ball rolling about planning a reception for Denise instead of a birthday party, probably in June after school winds down. Check back on the blog for some details. That'd be great for you to meet her and see the results of all the hard work, pulling & tugging you've done on her behalf since last July.
As far as medical things go, Denise is doing well without her feeding tube & PICC lines. She has an appointment with her primary care physician (PCP) tomorrow. This is the doctor that will see her regularly from here on out. The infectious disease doctor thinks it's safe to check in with her on a monthly basis for a while. Denise's vision & mobility problems are such that we're trying to get her declared disabled. Our city doesn't have a Dial-a-Ride, but we've started the paperwork for her to be accepted for Access Services (disability transportation). The paperwork for all this makes us cross our eyes sometimes. Wouldn't life be great without all the red tape? Great, that is, except for all the people that owe their livelihoods to the existence of red tape.

Feeding tube & PICC lines removed

2006-04-07T22:32:00.000-07:00

Denise has no more hospital artifacts left in her body! This morning the home care nurse removed Denise's PICC line. Then we got a call from the Huntington Hospital saying that they had a cancellation and they squeezed us in for an interventive radiology appointment to remove the feeding tube. Denise said they glued her wound closed. She couldn't eat or drink anything from late morning (when the feeding tube was removed) until evening. For me, having the last two tubes removed was psychologically a bigger deal than getting her out of the hospital this last time. With the last discharge, I was waiting for something to go wrong. But with these last two hoses being removed, I feel like things really are getting back to normal.

109 pounds, GOOD NEWS from ID doctor!

2006-04-05T10:43:00.000-07:00

Denise weighed in at 109 pounds without shoes. The doctors are talking about removing the feeding tube and the PICC line. Wow! Two more steps toward normalcy.
Better yet was an appointment with the infectious disease doctor yesterday that was fairly hefty in the good news department. He thought the liver felt a little smaller. That Denise's liver was full (packed) with granulomas (typical cellular reaction to infection) is quite impressive. Apparently her body's been able to muster the appropriate responses to infections. As a result of the granulomas, he expects liver enzymes to be off and fluctuate at times (AlkPhos up to 394 from 318, SGOT down to 82 from 89, SGPT up to 182 from 134, all labs drawn one week apart). The ID doctor is comfortable with drawing liver labs every two weeks now (rather than every week), and there was another titer drawn that will be sent to UC Davis for evaluation. He also commented that he thinks the cocci found in the liver biopsy was dead. MAJOR RELIEF to not have that stuff be new or active! Enough about livers...
The ID doctor said that he thinks the rash Denise has is more acne than anything, and thought that sweats & ongoing bad dreams are not typical side-effects of voriconazole (yes, odd that it started with her switch to that antifungal med, but he's the doctor and I'm not). He thinks that the Diflucan (a.k.a. fluconazole, the previous antifungal med) must have been the cause of the nausea that landed her in the hospital a couple weeks ago. Still not sure why her manic phases started or stopped.
Other questions he answered were that yes, Denise CAN still eat mushrooms. Yeah, we're paranoid to think that eating a fungus would have anything to do with a fungal infection acquired via inhalation. But then again I've heard & seen all sorts of unbelievable things during the last eight-plus months. Also, Denise CAN go to Coalinga (central California valley city where her parents and the cocci fungus live), but not when it's dry, dusty or windy. Apparently what she's been through, and possibly developing a resistance to one of the antifungal meds, puts her at a higher likelihood of having a flare-up if the conditions are right (or completely wrong, depending).
Yesterday my dad & I went to visit my grandmother and a great uncle that flew in from Washington, the siblings of my great uncle that died last week. I guess that nobody knew how bad off my great uncle was and upon reading my blog post that he wasn't expected to live much longer, my great uncle from Washington decided to catch an earlier flight than what he'd planned. As a result, he was able to see his brother hours before he passed away. Though the circumstances were unfortunate, I'm glad that this blog was able to play a part in allowing them to see each other one more time.

Afternoon at the park, Fresh feeding tube blood

2006-04-02T21:17:00.000-07:00

Here's a picture of Denise's first time at the park with the kids since coming home. You can see the PICC line still in her left arm, and the end of the feeding tube dangling out from under her shirt. As time marches on, the likelihood that those can safely be removed increases. We didn't get to church today (no, we didn't miss the time change). Jacob's much better, but still had a fever this morning & we didn't want him to expose any of the other Sunday school kids to his sickness. Denise helped prep a meal, clean up, fold laundry... all these "everyday" tasks are building strength & endurance for her. She had some fresh blood at the feeding tube insertion site. Other than that, she's doing well. I'm trying to sleep, but I wake up at her every cough, sigh, snort, click... whatever. Really, she's not that noisy a sleeper. I'm just paranoid and check to see if she's OK every time I hear a sound. We've got a couple important appointments early this week, so we'd appreciate your continuing to pull for Denise. We'd like to hear some good news from the infectious disease doctor in particular.

Full day at home, Retinal inflammation gone

2006-03-31T20:43:00.000-08:00

Denise has been home for one day now and things are still going well. We're all enjoying having mommy home. More good news came from the appointment with the retinologist. The inflammation that was there a month or two ago is gone now. The inflammation either signified old damage that's healing or new damage that's getting worse. Since only scars remain and the inflammation is gone, that is a positive sign. Denise's eyesight still has a big black hole in the field of vision in the left eye, but the right eye is good. The retinologist also said that the retina is in a sense a window into what's going on in the brain (oversimplified, but we're glad to hear it). The next big appointment that we're concerned about is the ID appointment next Tuesday.
Jacob is learning how to talk by leaps & bounds, but is having some difficulty getting his sounds correct. The live-in caregiver goes by "Coco" but Jacob keeps calling her "Dodo." We're working on that. Meanwhile, Gracie has for some reason started calling us "Father," "Mother," and "Brother." It sounds a little too proper to come out of my kid's mouth. Perhaps some of the formality is rubbing off on Gracie from the caregiver. She has a British accent. Yup. Can you believe it? We have someone with a British accent living with us to assist us. That makes us feel so... well-to-do. Finally, Denise actually went shopping today. No, not TV shopping. She got to go to Target and pick up a couple of things. I think it's the first time that my wife's set foot in a store since last summer. It was nice while it lasted. ;O)

Denise is finally home!

2006-03-30T23:29:00.000-08:00

Here's a photo of Denise with some of the crew at the SNF. These are just some of the people that played a part in her getting better during this last phase of her hospital stay. After taking pictures & saying goodbye to other residents/friends, Denise was discharged from the skilled nursing facility about 6pm this evening. So far, so good. Denise's choice for her first meal at home: our favorite pizza (from Petrillo's in San Gabriel).

Well, part of me wants to put "The End" with this post, but past experience tells me that it might be wise to keep this blog going for just a little while longer. And at some point, Denise & I need to write a big long "Thank You" episode on the blog to thank everyone. And there should also probably be an "Invitation" episode on the blog to let you all know when & where there'll be a big reception or something so Denise can meet a bunch of the new friends she gained by going through this ordeal. When the dust settles...

Happenings today: There was an appointment with the retinologist today to see about her vision damage. But there was a mix-up and an opthomologist came to see Denise instead. So we're going back again tomorrow to see the proper specialist. That's a biggie appointment. Another biggie appointment will be next Tuesday when we go to see the infectious disease doctor again. In the mean time, we're watching Denise for headaches, dizziness, and anything else that might signal a problem. Liver enzymes went down SGOT & SGPT were down about 20 points. AlkPhos was slightly higher than it was last time (in the low 300s).

Denise says "Thank you for all your prayers. Because of your consideration and prayer and God's strength, I've made it home!"
Love, Denise
She also says that compared to the hospital beds & Gore-Tex mattress pads she's been on for so many months, our bed has got to be the most comfortable in the world. I'm going to see if she's right. G'night.

Denise finally comes home today!

2006-03-30T09:19:00.000-08:00

Denise finally ends her eight & a half month hospital stay today!
We're on pins & needles, hoping everything goes well this time.
Pray, please.
I have to take another (unpaid sick) day off work today to get Jacob to the doctor. Probably just as well that I'm not at work, with Denise's discharge & all. Everything seems to be happening at once.

Tomorrow's the big day

2006-03-29T16:02:00.000-08:00

One day left until discharge. Tonight we were talking about how guarded both of us are about getting too excited, based on what's happened the last two times she was discharged. The details for this discharge seem to be falling into place better than before, so that's giving us some more confidence. Denise's caregiver was trained in feeding tube dressing care. My nurse aunt is coming tomorrow to take care of PICC line business, take Denise to an appointment in the morning, and be on hand for the discharge this time. Denise has still been having nightmares, but is otherwise mentally normal, getting physically stronger, and keeping her food down. The doctor looked at the rash we were mildly concerned about and thought it was just acne. On the one hand, that makes sense... synthetic blankets, 50-50 sheets, harsh detergents... but I think it's interesting that this came on only after the neurologist switched the meds. Time will tell.
Someone called our house to talk to Denise this afternoon. I said she wasn't available, but I could take a message. The caller was from Denise's medical group and wanted to conduct a customer satisfaction survey with her. Um... yeah. I told her that Denise was still in a skilled nursing facility, and perhaps calling back after the discharge would be better. That conversation's a close second to a conversation a few months ago, when Denise's old PCP (primary care physician) was getting a little irate on the phone and wanted to know who was supposed to have been her PCP during all the months she was in the hospital ("Well, you were."). Classic. A friend summed things up with some advice he emailed to me: "Bring some Fixall to your next hospitalization to seal up all those cracks you can fall through."

On a serious note, my great uncle was transferred to a convalescent home for Hospice care last night around 7pm and died around 5am this morning. He had some hospitlizations during the time Denise was really bad off, and I talked with my great aunt during those months about worrying over a spouse's health. In spite of the warning signs, I'm still a little surprised by how quickly things progressed. Yesterday I had envisioned taking a few hours today to drive out to see him, but that was not to be. So I'm disappointed that I missed that chance. My mom & dad visited him yesterday, though, as well as several other relatives. Please toss up some extra prayers for the family, and especially for my great aunt, who's undoubtedly had the worst day of her life today.

Two days until discharge, Dresser needed

2006-03-28T22:02:00.000-08:00

Two more days, and Denise should be discharged. I really, really, really hope that it goes well this time, so PRAY, well-wish, cross your fingers, toes & eyes...
Things were quiet on the medical front and Denise got to come home for her nightly three hour pass again. I noticed some ab swelling returning... hopefully that's nothing that requires a hospital stay. Or AN hospital stay, if you prefer to ignore the beginning "H" sound in hospital. Tomorrow Denise's caregiver will hopefully receive training in how to change the dressings for the PICC line & feeding tube. Though neither has been used for days, the chatter is that both will stay in, just in case. Speaking of Denise's caregiver, she's been Gracie's & Jacob's caregiver for the past couple days, as there's something going around our house. The caregiver needs to be with Denise, my folks are supporting my great uncle (starting Hospice), and so I'll stay home tomorrow with the sick kid(s). It's supposed to rain all day again tomorrow, and it'll be my luck that the kid(s) will suddenly fully recover and start bouncing off the walls.
We're trying to get the insurance company, medical group, SNF, doctors, pharmacies, and everyone else to dot their "i"s and dot their "t"s before Denise goes home again. Part of that involved our request to get her prescriptions filled a couple days in advance the discharge. Of course, the SNF doctor isn't supposed to write the prescription until she needs them (fair enough... nobody wants to fill a prescription for a patient that's getting everything covered while in a SNF). So we asked for the list of anticipated meds so that the pharmacy can be notified ahead of time to have those drugs on hand (during a previous discharge, meds were out of stock, heading into a holiday weekend, and the new shipment wouldn't arrive for days). Well, I need to double-check this, as it came through the grapevine tonight, but apparently the meds list that my nurse aunt received (that will eventually be the prescriptions) were the *old* meds from a prior hospital discharge; not the current meds. Yeah, imagine getting the pharmacy to order those & have them on hand (some of Denise's meds are oddball things that not every place carries), then getting over a dozen prescriptions filled, then finding out that a couple weren't necessary, and then being out for those copays. So easy to fall through the cracks... Last Friday my nurse aunt was going to bat for Denise with the case manager (actually the case manager's manager's manager... they keep escalating us up to the next manager) from the medical group, who was trying to tell her that certain things can't be done because that's not the way their system works. She informed him of many of the ways that their system had failed on two prior discharges, and that's why we're so persnickety where the discharge details are concerned. There were some compromises made on a couple itmes between what their system is and what our needs are. Odd to think about, considering that their business ideally caters to Denise's needs. I'm confident that we're viewed as being demanding. Okay. I just hope we're staying fact-based and polite while we're being demanding.

Dresser needed: We have need of a dresser for Denise's caregiver's room. Currently the poor gal has most of her clothes in cardboard boxes. If you have a loaner or a discard that might fit the need, please contact me. I can pick it up.

Three...

2006-03-27T22:06:00.000-08:00

Three days until discharge. Absolutely nothing medically significant happened today, but Jacob was able to hang a spoon from his nose during dinner tonight. He learned that habit from me. I've got quite the honker, but Jake's nose is dinky. So it's extra-impressive that he was able to do this trick.
Denise's primary care physician paid her a visit. We really appreciate how he's going above & beyond what's expected & what's normal to familiarize himself with her case before she leaves the SNF.
I learned late this afternoon that my great uncle is not expected to live more than a day or two. Relatives are flying into town. Please lift up my great aunt. I know exactly what it feels like to be told that your spouse is in grave condition, and it's a miserable feeling.

Countdown to discharge, some good news

2006-03-26T21:28:00.000-08:00

Four days until discharge. Denise overall has been doing well physically. The only downers are that she's been having nightmares fairly consistently the past few nights, feels a pain in her chest (possibly a strain from her little fall the other day), and had a rash on her chest. The rash is not the same as what she had as a symptom of valley fever back in July. I got a reassuring email from a grandparent of a couple of my computer students that had valley fever, saying that she too got a rash, but it faded and life continues to go on.

We got some positive news on Friday from the ID doctor. He has some new info on titers (tests to measure the concentration of the cocci in her system) that seem good. Denise's titer on the CSF (cerebral spinal fluid) is 1:2 (the same and not higher then the one in November). So he is not as concerned about her headaches... whew! The serum, blood titer is only slightly higher than in January and he talked with the expert pathologist up at U.C. Davis who said it can just be a variable. So they're counting is as no change. The liver biopsy is not growing any cocci. I'm glad so far, though I'm cautious because if I recall correctly, it can take up to two weeks for it to be seen. He plans to repeat the serum titer in early April when we see him. Now that said, we still don't know what caused Denise's ab pain & manic episodes a couple weeks ago

Once again from the raining & pouring department: my dad's uncle went into the hospital over the weekend and is in ICU. I don't know all the details, but he also had cancer issues within the last few months. Everyone on my dad's side of the family tends to downplay illnesses, so my concern is that things were (and are) worse off than what my great uncle might have let the family know. He & my great aunt are a couple more poeple that could use some extra pull right about now.

Headache, Dizzy, Rash, Nightmares, Dad's cancer news

2006-03-23T22:01:00.000-08:00

Denise is having some emerging symptoms today. Mild headache (if severe, ID doctor says to go to emergency), some dizziness, and she was more tired today than she has been the past few days. She also has a mild rash on her. It doesn't look the same as the rash that appeared just before she went into the hospital (whew!), and it could just be a side-effect of one of the new meds that the neurologist put her on. She also had two bad dreams last night and one the night before. She was wondering if that was a side-effect of one of the meds as well. I'm probably a little over-sensitive to all of these things right now, but the appropriate doctors have been notified, just to cover all the bases. It's still looking like next Thursday will be her "graduation" day, barring any major crisis. I want so badly to throw her a huge party, but she just wants to be home where it's comfy & quiet. But there can always be a party later, right? Right.
She did well during her visit home for the evening with the family tonight. She continues to eat well and hold everything down. Jacob seems to have completely warmed up to her since she's been home for dinner these last few days. That's awesome to see!
Sadly, as Denise is improving in several ways, my dad's health is declining. Every now & then I throw in a tidbit of news about my dad's status with cancer, since so many of you that are following this blog know my parents as well. So here's an update. He's at the point where he's lost lots of weight (wieghs much less than me now, though he's half a foot taller), lost his hair, and he's having trouble breathing, as well as coughing up blood. Earlier in the week my folks found out the results of my dad's latest scan, and the tumors have grown significantly. That means that the clinical chemotherapy trial he was on didn't work. Today at the oncologist appointment the prognosis was estimated at about three months if nothing's done. Apparently another drug has recently become available and he may try that one. He's still going to southern gospel quartet concerts in the area, eating out with buddies, and trying as much as possible to do all the normal things. My folks are going to look into a retirement community very soon and start streamlining, possibly trying to sell their house as well. Yeah, lots of things going on these days.

Discharge date set, Liver labs, Bedtime pic

2006-03-22T23:25:00.000-08:00

I had to post this neat pic of Denise reading to the kids at bedtime tonight during her pass home from the SNF. It's a perspective shot. Her legs are actually about half the width that they appear here. Lucky for you I'm exhausted; that makes tonight's post quite short. We've requested that the discharge date be set for next Thursday March 30, and the SNF doctor seems to be receptive to the idea. We also presented a "list of demands" to the SNF (with a smile, of course) that we'd like to have in place before Denise is sent home. Third time's the charm, huh? We'll see. The liver labs came back today. It's a mixed bag. All the changes are slight, with some numbers up, some down. In spite of what her liver's doing, though, her mental state was about normal today. Of course, she was only home for a little under three hours. When she's back with me 24x7, that'll make her crazy again, right?

Still at SNF, Heps negative, First fall, Evening at home

2006-03-21T21:32:00.000-08:00

Update to today's earlier post:
Denise cheered up as the day went on, plugging away at getting better. She seemed the most "herself" that she's been in a few days. And she's still at the SNF (skilled nursing facility), however chatter is increasing about getting her discharged. One of the options we thought of was to request her official discharge for next Thursday. At that time my nurse aunt will be back for another visit and we'd have Thursday and Friday as regular business days in case anything goes wrong. However that would use up more of her precious days in the SNF (100 per calendar year are covered, and she's used about half... it would be prudent to conserve them just in case). So there's a balancing act. They were supposed to do a blood draw today to see about the liver and electrolytes. If all's improving there, if she continues to be emesis-free (over a week, now), and if the seizures stay away, I'd feel more comfy about having her home earlier than later. As I'm sure you can understand, the last couple of hospital discharges have left me a little bit gun-shy (those of you that know me well are probably thinking, "Huh? Phil? Gun-shy?"). Maybe I should say apprehensive instead.
All hepatitis tests came back negative. Whew!
The OT had Denise working on math problems. During PT, Denise finally fell. It was a slow, graceful, controlled fall from a low elevation, so she's OK. This is the first fall she's had since learning to walk again. Not bad, especially considering that way back in November at Huntington's rehab, they told us that we should expect falls, and just to get back up and keep trying.
Denise got to come home for dinner with the family, bath time with the kids, and started them to bed. I had to leave before bath time to go to a meeting at school, but Denise's caregiver and my mom were on hand to make it a successful experience. And did I remember to snap a picture? No. Duh. Sorry. My goal is to pick her up from the SNF before dinner each night and get her back after we get the kids ready for bed.

Tweak neuro meds,

2006-03-21T14:55:00.000-08:00

Yesterday the neurologist was happy to see Denise better than she was at the hospital last week, and much better than she was at the very beginning of January. He tweaked the meds and their dosages some more to fine-tune everything to meet Denise's needs. He gave us a list of side-effects and warning signs to look for in her behavior and wants to keep following her. Still no answer as to whether what she's gone through recently was caused by the infection on the move or something else. Nor could he tell us whether the lesions that showed up on the most recent MRI are "old" (from November, or earlier) or more recent. We also don't know if things should get better, stay the same, or get worse. More wait & see. The neurologist asked Denise some times tables math questions and she couldn't answer them (more on that later). The infectious disease doctor thought the enhancements on the MRI were granulomas that show up to encapsulate the problem sites. That's an oversimplification, but it's a positive opinion.
Last night Denise requested a particular catalog that she had while manic. Since she's been pretty even-keeled for a while, I gave it to her. She couldn't believe all the things she wanted to order that she didn't even like & wouldn't want. She also was a little down about seeing her calculations that she'd written in the margins. She tried to redo the calculations and said she couldn't remember what to do. Simple addition isn't difficult anymore, but everything else is difficult. So this morning when I visited her before work she was sort of sad & frustrated by what's gone on/going on mentally. I reassured her that no matter what happens, I'll still be more nuts than her. Anyway I'm going to raid the teacher resource room and photocopy some math worksheets for her so we can practice. Photocopy... good thing we don't use ditto machines anymore. Anybody else remember carrying cold wet ditto sheets for your teacher & almost passing out from the smell of those things?

Three hours pass, Neuro appt

2006-03-20T11:53:00.000-08:00

Yesterday was pretty good for Denise. The night before, she was on the phone until late, then finally realized that she was completely exhausted and fell asleep almost immediately. So I was worried that she gets overstimulated and goes bonkers. But the next day (Sunday), everything was fine. She was not at all manic while we were out at church & lunch at Panda
Express. She wanted to go other places while we were out on our pass from the nursing facility, but she seemed to understand our time limitations this time and was able to pick just one other trip for the day. As a test run, I brought her a catalog she requested from a jewelry store in the mall. Upon seeing a $22,800 Rolex watch on the first page, she said I should bring her another catalog; that one was way out of our ballpark. That's my girl. She did exhibit some compulsive behavior a little later in the day (tearing a magazine apart because she liked and wanted to save every picture in it). But overall, I feel like I can tell the neurologist good news when we go to the appointment this afternoon. It seems like he picked an appropriate combo of meds and dosages for her to bring her back closer to her normal self. I hope we can get her mental state under control and keep it there.
I was informed that Denise can leave the skilled nursing facility up to three hours per day. Today most of that will be taken up with the aforementioned visit to the neurologist. But we're all looking forward to having Denise come home for a couple of hours each day for dinner, bathtime with the kids, and bedtime stories. It's been too long that she's been out of the routine. I just got a call from the nurse aunt stating that there's starting to be some chatter about getting Denise out of the SNF and back home. This could happen tomorrow, could happen in a week or two. We expected that since she's not actively using the feeding tube, this would be the case. Based on prior experiences with discharges, we're a little bristled. But we do want her home. Things we want to be in order before she's sent home include not needing the feeding tube, no emesis, no seizures, meds adjusted, liver enzymes lowering... I'm sure the insurance company thinks we're a little bit demanding & high-maintenance.
Denise's caregiver is moved in yesterday, even though Denise is still at the nursing home. Many thanks to the people that pitched in and helped make short work of the process. Our hope is that Denise will be healthy enough to come back home so that both her and her caregiver can truly be "live-in.".

Need for moving help Sunday, 8 months in hospital

2006-03-18T15:12:00.000-08:00

Business first:
We need some help moving Denise's caregiver from her current place into our place tomorrow (Sunday). Sorry for this late plea... the caregiver just now found out that her moving help is not available after all. All her stuff's in one room, so there's not much. But if we could get an extra set or two of hands tomorrow to help quickly load things up in Pasadena around 2pm and another few sets of hands to unload a few miles away in Duarte later in the afternoon, that'd be a tremendous relief for all of us. Please contact me ASAP if you can help (:: data remove 20050320 00:01:PST ::).

Today marks eight months since Deinise went into the hospital. Two thirds of a year. Over one third of Jacob's life. To "celebrate" (because griping about it doesn't do any good, right?), we were allowed a three hour pass this afternoon. She wanted to go to Mimi's Cafe, where she ate well and held things down. We also went home to relax (someone else had the kids, so it was nice & calm). Denise likewise was nice & calm, and did not exhibit any compulsive behavior today. She was asking how bad things are for her, so that was a little tough to talk about some of the negative possibilities. The waiting game doesn't help much, either. Other than that, she had a great time and was happy to get out for a while. While we were at home, one of my teacher friends that's been organizing meals for our family came by to drop off food (Dream Dinners... they're incredible if you're in a pinch for time and I recommend them strongly, by the way). She said that Denise was looking good (she had her black & red wig on). It's always good to hear other people say how well Denise is!

Out of hospital, back at nursing home

2006-03-17T23:39:00.000-08:00

Wow. What a couple of days! So much uncertainty, so little that definite enough to write about. Last night Denise was transferred from Huntington Hospital back to the Country Villa skilled nursing facility. Though she was doing well physically, she was getting increasingly manic and exhibiting compulsive behavior. She started tearing & cutting magazines to shreds... she was "saving" the pages & images she liked so she could file them away... every page in the magazine. Minutes before leaving, the neurologist tweaked the meds and the dosages. The neurologist told us that he no longer thinks we're dealing with just Reglan-related symptoms of withdrawl. He asked the SNF staff to keep an eye on Denise and notify him of any noteworthy behavior. Once back at the SNF, she apparently slept through the night.
Today she was much calmer. She was very close to her normal self. The tweaking of meds for manic phases seemed to be right on. She wasn't going bonkers, nor was she "out of it." However she was still enthralled with cutting up magazines. She gets so into something that she won't stop to use the restroom or eat a meal. We'll be working on that. I got her a Klutz book of "stained glass" projects (peel-off puffy painting on a sheet of plastic), and that seems to be a hit. She didn't take a nap today, so hopefully she'll sleep through the night.
The developments over the last couple of days have been particularly hectic & draining. Thanks are in order to several individuals & families for cranking up the support a notch. Thanks for caring for kids, making calls for me, feeding the family, driving the kids to & from school, and just plain caring enough to inconvenience yourselves and help on a moment's notice. I can't wait for the dust to settle so I can return the favors.

Cocci present in liver, probably in brain, too

2006-03-16T14:06:00.000-08:00

The liver test came back positive for cocci. The doctors say it's probably in the brain, too. That's not surprising, as we knew that she'd always have the cocci disseminated in her system and have to be on antifungal meds the rest of her life to keep it from getting out of control. As far as what caused the liver numbers to go out of whack (they're getting better) and what caused the sever pain, I have some questions. I'd like to clarify if these things were due to a new cocci infection flare-up or due to the damage that the antifungal med (Diflucan) can cause. Both are possible, and the hospitalist thought it was the latter. The ID doctor and the hepatologist will compare notes today and tell us what they think.
As far as the brain issues and behavior goes, I wonder if that's due to new cocci infection, or withdrawls from the Reglan. The GI doctor thinks it's not Reglan-related, and I'd certainly think he'd know. But hospitalist said she's seen it happen before and told us that the neurologist thinks it's also Reglan-related.
Denise is eating well, and just might be getting her recommended calories *without* the use of the feeding tube. They're going to keep it in for a week or two, just in case, though. The hospitalist said that since all Denise's tests are done and she is doing well (as far as eating, being pain-free, emesis-free), there's no need to keep her at the hospital. She might get out tonight. I don't know if the intent is to send her back to the nursing facility or back home. The feeding tube is the big thing that was keeping her at the SNF, so if she doesn't need it currently they might not send her there. As much as I'd like her home (again, when she's good & ready), it would be nice to have her at the SNF for more observation & PT/OT.
More info later...

Liver biopsy done, Waiting and seeing

2006-03-15T23:39:00.000-08:00

Lots has happened yesterday & today, but nothing conclusive to report yet. Still waiting for lab results (some labs were sent to UC Davis, where they really know their Valley Fever). Here are the headlines... tomorrow I'll try to post the details.
- Liver biopsy was performed today
- Even if cocci infection is active (liver or brain), the treatment is appropriate and the level of the meds can be upped if needed
- Spinal tap shows no elevation in white cells (good... hopefully no infection) but elevated protein (I'm not entirely sure of the ramifications of this), nothing fungal is growing yet (but it can take up to two weeks to see the growth)
- Liver enzymes coming down again (Yay!)
- Feeding tube was unclogged today, but not hooked back up as of tonight
- Neuro doctor is changing around some meds to try and deal with the manic phases (no depression... she's either fairly normal or hyper), while also working with specialists to figure out what's going one
- She's eating fairly well and food's staying down
- Still no pain in the side, no painkiller needed
- Bright spots in the brain that showed up on the MRI are being discussed by the specialists
- The doctors are puzzled by the handful of recent symptoms coming and going, while Denise in general is improving in other ways
At this point I wonder what's worse: The cocci infection flaring up again in spite of being on the antifungal med for this long, or having something new come up to deal with.

No liver biopsy, Seroquil upped, Feeding tube clogged

2006-03-13T22:17:00.000-08:00

The liver biopsy did not happen today. In fact, I heard that it hasn't been ordered. I don't know what to make of that. I'll ask tomorrow. Tomorrow the regular ID guy that's familiar with Denise's case will be back, so I'm on pins & needles to find out what the next step is. The feeding tube clogged this morning. People came to try to unclog it, even running a wire through it. But nothing worked, so Denise is going down to the radiology department tomorrow so they can have a look and hopefully unclog the thing. In the mean time, she's eating about half of each meal and having snacks in between, and again to day everything stayed down. She has not complained about the pain in her side, nor has she had painkiller. I wonder if the Seroquil (used for bipolar disorder, also for anti-anxiety & insomnia) that she started on has some pain-relieving effects? Speaking of...
I forgot to mention yesterday that Denise wasn't able to do some simple math addition problems correctly (no wonder she was able to shop... and shop... and shop). Based on that, and what the neurologist saw with the EEG, he's upping Denise's dose of Seroquil from 25mg at night to 50mg (people that regularly use Seroquil take 300mg a few times a day, so Denise's is a very low dose).
Denise stayed up all last night and slept most of the day. That makes it tough to bring the kids for a visit. And while staying up, she was looking over the couple of catalogs that I brought. Today I changed up the plans. I removed the stimuli, replacing catalogs with a sketch pad & colored pencils, a health magazine, and a home improvement book about fences. I thought Denise could get some ideas & do some designing... the fence in back's about to fall over and we wanted to put one up in front to keep the kids contained. I also bought her a book that lets you make funky critters out of pipe cleaners, suction cups, and punch-out shapes from the book. She'd really like to do some sculpting, but the clay is a bit messy and Play-Doh isn't quite her thing. She's missing out on PT & OT. So tonight when she woke up we went for a walk around the floor. She did three laps with her walker, and pushed her own IV pole for part of a lap. She also picked up the pace for a few yards, almost jogging with her walker. We also did some leg exercises while holding the rail along the hallway. One of the nurses said that we should try out for the Rockettes. Maybe Denise should. My legs are too hairy.

MRI shows new problem areas, Spinal tap

2006-03-12T23:20:00.000-08:00

Denise slept through the night last night and has continued to calm down, thanks in no small part to mild drug (I forgot the name, but the neurologist explained that it's a dopamine inhibitor). She did not complain of the pain in her side today, nor did she get any painkiller. She said she ate fairly well at all three meals and had no emesis. Out of all the hospitals, she liked the food at Huntington the best, and she says she's packing it away while she can. She had some more tests & scans today, including a spinal tap tonight. She's in good spirits and was a champ through the spinal tap (fluid was clear, not cloudy... that's a very, very good thing). The liver biopsy should be performed tomorrow.

The official results of the MRI are not in. Of preliminary concern tonight are "enhancements" (bright spots) on the MRI of the brain. These were not there in a previous MRI. Possible worst-case causes included tumor and infection. If the liver biopsy shows the presence of active cocci, it can be presumed that the same thing is going on in the brain. If so, it is possible that Denise will have to go through another round of amphotericin. The side effects can be hefty, and ironically can mimic and/or mask the symptoms of the problems that it tries to solve. Denise was able to benefit from a short course of the stuff before, with minimal side-effects. So she's got a good track record if it has to be used again. Again, all of this is based on a preliminary reading, and some "what-ifs." So here we are, once again waiting and seeing.

Admitted to hospital, Cocci status? Diflucan toxicity? Hepatitis? Reglan withdrawls?

2006-03-11T09:40:00.000-08:00

Denise was admitted to Huntington Hospital yesterday afternoon. We have no idea how long her stay will be. She's in good spirits but has sever pain in her side at times (such as when doctors press on her tummy). Phone number to her bed is 626-535-6732, room 4525. Here are the nuts & bolts of what the specialists said that came to visit her last night.
- Neurologist doesn't suspect she's having seizures, nor that she's bipolar (though will run tests to check). He thought that it's possible she's having withdrawls from Reglan. He'll give her something else and ease her off of it gradually. Again, the Reglan was stopped last Friday in hopes that it would cause the liver enzymes to decrease, which leads us to...
- Hepatologist/GI guy is perplexed. Denise is gaining weight (98.8 pounds... different scale, different clothing than the last weight of 102.5) and she's getting stronger. So why are the liver enzymes out of whack? For you hepatologically hip people, SGOT is 94 (down from 117), SGPT 216 (down from 226), AlkPhos 411 (up from 379). They're going to do a blood workup, hepatitis test, and if they can't figure out what's going on, resort to a needle-drawn biopsy of the liver itself.
- Infectious disease doctor didn't have much to say that we wanted to hear. One possibility is that Denise is not tolerating the Diflucan (anti-fungal) med very well, and that's not an infrequent problem. Another possibility is that the presenting symptoms Denise has could signal a progression of the cocci infection, perhaps in the liver or even the brain (though the neurologist eased our concerns a bit), but he's puzzled as to why she's doing so much better otherwise. His plan is to start from square one and reassess the status of the cocci infection. So Denise will have an MRI of the brain, a spinal tap, blood check for cocci, and do the aforementioned liver biopsy if needed. He's also going to look into holding off on the Diflucan and switching back to V-fend (voriconazole) as the anti-fungal med. There aren't too many choices when it comes to medication that's effective against cocci. He also mentioned the possibility of hepatitis and asked if Denise had had any blood transfusions. Uh... yes, a whole bunch of them. The chance of hepatitis is remote since the blood units are screened. My understanding is that much more can be done about hepatitis now than in years past, so that's of some consolation, if it comes to that point.

From the "funny, as long as you're not the one paying for it" department: Denise was up until the wee hours of Friday morning at the nursing home, ordering from the shopping channel. Then she went to her room and decorated the styrofoam heads under each of her four wigs. The total of the orders made the Avon order from the other day look like a small sum. She remembered ordering, but can't remember the names of the companies, most of what she ordered, nor what exactly the totals were. So I checked through her cell phone log to find the numbers dialed between midnight and 5 am and called to cancel (or at least find out how to return) all the orders. I'm hiding the credit card & ATM card, and I'll be hanging on to her cell phone for a while. We talked and she's agreed to circle anything she wants from catalogs, and then later we'll go through again to prioritize, whittle down, and order things she really wants together. On the bright side, now I have a great list of gift ideas for her birthday. I drowned my financial sorrows this morning by ordering breakfast from Tommy's. I tried their breakfast sandwich... picture an Egg McMuffin with Tommy's chili, tomato, onion, and pickle added. What was I thinking?

On a tragic note, I saw one of my eighth-grade students in the hospital cafeteria, and later outside the pediatric unit (just down the hall from Denise's room). His ten-year-old cousin was hit by a car on Wednesday night. Last night's CT scan showed no brain activity and he was not expected to make it. There aren't words that can adequately describe what the parents were (and are) going through.

Denise going to Emergency

2006-03-10T13:19:00.000-08:00

Denise is being transported from the nursing home to Huntington's Emergency Room shortly. I'll finish out the next hour of teaching and then meet her & her caregiver at the hospital. This transport is for evaluation; she may or may not be admitted tonight. One of the specialists requested this out of concern over what's been going on since Friday or Saturday.

Two requests for help, pronto

2006-03-10T07:48:00.000-08:00

Snow gear for kids:
Friends are going to take Gracie & Jacob to the snow in the local mountains tomorrow morning. We have none, zero, zilch snow clothes for them. If you're local and have snow clothes sizes 2 & 4-5 that we can borrow for the day, please contact me ASAP (cell 626-429-4244, pdjwilliams@yahoo.com). Otherwise, we'll start scavanging the thrift stores late this afternoon.

Extra set of moving hands:
This Sunday after 12pm: We need to rearrange furniture in prep for having Denise's live-in caretaker move in (even if Denise is still at the SNF). A couple of items require partial disassembly in order to move to other rooms. If two or three people come by for an hour or two, that'd make things much easier. Contact me if you'll volunteer. Did I mention that I'll cover lunch?

Blood draw for liver, Short home visit

2006-03-09T21:48:00.000-08:00

Blood draw for the liver happened at 4:45 pm today. That means we won't hear results until sometime tomorrow. The pain overall has been diminishing as the days progress, however there was a very painful time this morning for her. She said that once in a while she can just find a comfortable position and the pain disappears completely. Interesting. Also interesting is a pattern for the pain, hot flashes, dizziness, and nausea... It's the worst overnight and during the morning. Might correspond to the milk of magnesia they're giving her each night to keep the GI tract moving along. And in going in the direction of digestion, the feeding that they're giving her has contained fiber, which clogs the tube fairly frequently. The word today is that they're going to change out the brand of feeding and give her one that has no fiber in it (this is in compliance with what the GI doctor recommended in the first place when she moved to the nursing home). We'll have to stuff her with peaches, pears, prune juice... Hopefully she'll be able to keep it all down. She had one 150cc emesis today right after drinking some milk with supplement powder in it (and she likes the taste). The calorie count has been put on hold for a while, until she can start to eat more food by mouth. Jumping back to the emesis, Denise's caretaker said that Denise frequently complains of feeling very hot (she's not running a fever) before throwing up. She sometimes complains of dizziness when laying down. She's been itchy, too. Maybe she's allergic to something, but it's hard to see what's changed that would cause these things all of a sudden. I believe that these things started on Friday or Saturday, and we'll keep track of everything in hopes of giving the specialists clues that might help them figure out how to help Denise.
She was sleeping this morning when I visited her, then she was all wound up during the afternoon. That seems to be the time when she's the most wired. I don't know... maybe her feeding tube should be flushed with caffeine-free Coke instead of regular? The occupational therapist thought that it might be a good idea to stop bringing the kids to the therapy sessions for a while, because Denise has started becoming more distracted... no surprise... they're cute kids. The OT noticed that Denise has been hyper for a few days, and also brought up something that I'd forgotten to mention that happened yesterday. During therapy, the OT told Denise that her lips were dry. Denise didn't even respond. I tapped her on the shoulder and asked if she heard what the OT said. She hadn't. That worried me, as it reminds me of a mild version of how she was during her seizure. The doctor requested an appointment with the neurologist (hopefully we'll get to see the same one that tended to her at Huntington for the sake of consistency). I received an email suggesting that we look into the possibility of Denise being mildly (I'd think *very* mildly) bipolar. Perhaps that's worth a look-see if things don't eventually even out. But I thought that perceiving one's spouse as being bipolar is simply a result of being married for any significant length of time, each person thinking that the other is completely bonkers at times.
Denise had big plans for going out on a pass tonight. But all we did was come home for about an hour. Never again will we try to take her out during rush hour. We spent a disproportionate amount of our pass time in traffic. By the time she left she was losing her hyper edge, but during the day she talked about wanting to shop for pets, visit the jewelry store, see a movie, go to the Robinson's-May sale, start up as an independent Avon consultant, look at housing closer to work & church, paint a mural in the nursing home's dining room, start taking summer classes to become a physical therapist (she's loved her PTs & OTs), adopt children, fill out an employment application at the nursing home... Yikes! Too much stuff!
I distracted her by snuggling when we got home on our pass.
That worked.

Hyper again, Ab pain, Itchy

2006-03-08T23:59:00.000-08:00

Denise had a better night overnight than she did the night before. There was still ab pain on the left side, even going up under her ribs. The doctor pressed on her and thought that it was caused by the enlarged liver. Apparently the liver itself doesn't have pain receptors, but the surrounding tissues and organs do, and aren't happy with the crowding. It's interesting to note that upon comparing the recent CT scan with one done months ago at USC, the liver has not changed size. So I don't know why the pain... constipation form stopping the Reglan? Who knows?
She had a 300cc emesis. They're going to see if they can just give her tube feeding at night and start up a calorie count during the day to see what she's eating. We learned our lesson after the New Year's Eve discharge and will make sure that any emesis is recorded and subtracted from the intake nubmers.
Denise was calming down during the last couple of days, but was wired today. She got to go out to the bank with her caregiver & my mom for about 45 minutes. At night she wanted me to take her out again (about 8:30). She was ready to go to Robinson's-May and shop (get the going-out-of-business bargains). She also wanted me to take her to the pet store so she could buy Gracie a bird and Jacob a turtle. Great... more things to throw into the mix. I talked her out of that, but we thought perhaps a good compromise would be to buy a small bird & a couple of fish to donate to the aviary & aquarium in the nursing home's family room. Denise also came up with plans to demo the bedroom and redo it in a rainforest theme... painting trees on the walls, cutting in some custom-made skylights, putting in potted plants. Her being the artsy one and me being the geeky one, this is nothing new to either of us... she comes up with awesome plans, I argue time, dollars and physics, and we meet somewhere in the middle. And I've got to hand it to her, she always comes up with great ideas on a shoestring budget in the end. But tonight was a little over the top. There's a hotel in California called the Madonna Inn, and every room is decked out in an elaborate theme. I think she could go to work for them. She also phoned in a big, big, big, big, big, big, big Avon order to the person that gave her an Avon gift basket from a couple of weeks ago. The consultant called me because she thought Denise's order was a little excessive, considering the bills of this ordeal. Denise, big heart that she has, was ordering gifts for several people that work at the SNF, and had ordered something from almost every page in the catalog. Anyway, since we didn't get to go out at night, I'm arranging to take her out on Thursday for an hour & a half or so. I'd be stir-crazy if I were cooped up for so long, too.

Ab pain, J-tube clog, No headaches, Night help, Monkey

2006-03-07T21:07:00.000-08:00

Late last night Denise was in a fair amount of discomfort and even some nausea (which has been rare lately; they gave her a Zofran meltaway on her tongue and that helped immediately). We hired an overnight caregiver for her, and will do that again tonight and tomorrow night if she feels she needs the extra help. Denise didn't get much sleep and was always asking for pillows to be shifted, heating pads, ice, etc. She's been having increasing ab pain after the Reglan was stopped on Friday. While we're crossing our fingers, toes, and eyes in hopes that the Reglan is the culprit in abnormal liver labs, it has helped with peristalsis and kept food moving through her, as well as reducing food coming back up. By the way, four days after the Reglan has stopped, she had no headaches, seemed way less hyper, and was happy to take a nap any time she could. She did want to go shopping very badly. But after close to eight months in a hospital, I guess anyone would want to go shopping, if only to get out of the hospital.
This morning started with a call that her feeding tube had clogged again. So once again, I seemed to be the lucky one that got it unclogged. Pretty soon they're going to have to put me on the payroll. I'd rather go over there and work the Coca-Cola through the tube than put her through a day without feeding while waiting for an appointment with the radiologist to unclog the tube. The pain has lessened during the day, thanks to some laxative meds and Fleet. But she also threw up twice today. In the big picture of what she's been through, this isn't much. But it's still frustrating to her.
Tonight when we visited she was just about asleep. The kids were a little disappointed that mommy was so sleepy. Until, that is, they caught sight of a monkey stuffed animal that was hanging around on the IV pole. It's a party decoration for Jake's jungle-themed birthday party, sent by a new friend in Washington that was a stranger up until a coulple months ago (thanks!).

Heart good, 102.5 pounds, Wigs

2006-03-06T21:09:00.000-08:00

The cardiologist had good news. He said that Denise's ticker sounds good. He's not worried about the discoloration in the legs as long as there's no edema or pitting; it's probably a result of being laid up for so long and will go away. He thought the only reason he'd need to follow her is to be selfish so he can see how good she's doing. He's a neat guy, and he & his family's been following Denise's progress since she came to Huntington Hospital. While at the appointment she weighed in at 102.5 pounds! Also, she seemed a little mellower today. That makes concerns about seizures diminish. I think I may have forgotten to mention that her calcium was high during the last week. I remember that an electrolyte imbalance could've been a possible cause of her seizures in November. My understanding of what electrolytes in what quantities can cause a seizure is practically zilch, but perhaps the calcium evening out has something to do with her mellowing out. I also received an email today from someone that had a baby that had to be on Reglan, and seizures were involved. Interesting to see how all this stuff interacts with everything else.
Denise has been feeling self-conscious lately since she's got so little hair, skin's pale from not being in the sun for over half a year, and having to wear a gown much of the time when she's not working out at the nursing home. So she told me that she wants to get some wigs, pierce her ears, and get some jewelry, including real diamond jewelry. I quickly whipped out an Avon catalog to try and distract her. She never was much of a jewelry before... that's why I married her (smirk). Actually, I'll gladly try to pick out the perfect set when the dust settles from all of this. She deserves it after what she's been through. She had my nurse aunt & I raid her jewelry box, and she wore a necklace that her sister made when she went out today. That gave her a boost of self-esteem. Anyway, on the way back from the cardiac appointment today she had enough time to pick up a couple of wigs and some cheap-o clip-on earrings (piercing would be an infection risk right now, so that's out). And she had tons of fun with the wigs... one is a regular lightish brownish longish curlyish wig, and it looks pretty close to her normal hair color. The others have red & purple in them, and cuts that her hair could never manage. It kind of reminded me of the ad for the "Alias" TV show. It's a hoot... I'll post pictures soon.

First time back at church

2006-03-05T23:10:00.000-08:00

Here's our family at church, finally with Denise again. It was her first time back in over seven and a half months! She sat in her wheelchair the whole time but stood up for this picture. She wanted to show off for you all. She loved seeing a bunch of people she knows through my school, including a couple young ladies that were students when Denise was a teacher aide at my school. She also had a visit from one of her sisters that hadn't seen her since Christmas. I see Denise every day, so it's sometimes hard to see improvements. But it was nice for Denise's sister, since Denise is so much better now than when they last saw each other.
Medically, here's the stuff... she threw up about 200cc near the end of our car ride to church. After that, she was fine. Again today, based on what she was saying and how she was acting, I was wondering whether or not to be concerned... I don't know if she's just wound up and excited to be out for a coule hours and ready to tackle the world, or if there's something going on neurologically. Denise was much less manic today, though, and was very tired by tonight. She also started itching all over during the night. We're looking into the possibility that withdrawls from Reglan (stopped in hopes that it was causing high liver enzyme numbers) can cause her to be hyper & itchy. My nurse aunt did find a case wherein a child had a seizure when Reglan stopped. Wait and see, wait and see. Tomorrow she has an appointment with the cardiologist. She's a miracle from a cardio standpoint. There was a point where her ejection fraction was 10-15. Last we heard she was closer to 55-60. Should be interesting to hear what the cardiologist has to say about her tomorrow.
Tonight while we were visiting, we talked about what she remembered of her seizures. At Huntington there was a point when she was hallucinating about fecal material on everything. She told me last night that what triggered that was an episode of Fear Factor that she saw just before her seizure. She couldn't remember what may have triggered her obsession with numbers and when she was going to die, though. She also recalled many of the rather disturbing things she was saying and paranoid about while at USC. She couldn't make any sense of where those things came from, but she did remember many of her fears. She was also able to recall more new memories from her hospital stay at Arcadia Methodist, like touching nurses on the face to thank them (she had a tracheostomy and couldn't talk) before passing out again. I think it's impressive that she can remember that much while heavily sedated.

Lunch pass, Playing dressup, Headache... hmm...

2006-03-04T23:12:00.000-08:00

The day started out with a nice big 400cc barf that contained last night's dinner. Then it got much better. Denise got to come home on another two hour pass and ate lunch with us. She played "dress-up" with Gracie, and here's the picture to prove it. Gracie asked mommy if she had a "married" dress, so I got it down out of the garage, where it has been stored since the cleaners put it into a nice box to preserve it about eight & a half years ago. Denise was excited that she was still able to fit into the dress (and it's even loose right now). We will also get to hang out as a family tomorrow, as I found out that Denise will get one more pass. She wants to go to church tomorrow morning. That'll be the first time in over seven months, so that's a big milestone.
Yesterday and today I noticed that Denise has been the most animated I've seen or heard her lately. Of course, she was excited about coming home for two hours yesterday and today. Tonight she was telling me about all the things she wants to do and big plans she's making (because, she says, she knows she's going to live and excited about it). There are house projects, getting the kids to college, buying a house, dealing with a funeral for Daniel, and several other things that seemed a bit lofty and overwhelming to me at the moment. I'm just getting by day-by-day, it seems. At one point, she said she was getting frustrated by hearing me talk. Yay... things are back to normal married life! I jest. She said she felt like she had to tell me "the truth" about what she was thinking, but had a hard time articulating what she meant. She also said she had a headache come and go during a fairly short time tonight. That headache, coupled with her enthusiasm and some of the things she was focusing on, reminded me a little bit of when she had her seizure back in November. Tonight she was nowhere near as manic, nor obsessing on a topic as she was during that seizure a few months ago. But it still raises a little yellow flag of concern and uneasiness in my mind. So please add that to the liver function on your prayer "to do" lists.
The purpose of this site is to focus on Denise's progress and concerns. But I'll take a moment to yap about me. Over the last few months, many people as how I'm doing personally after they ask about Denise. It's been hard to be around enough & maintial some noramalcy & serenity amid the storm for the kids, be an advocate for Denise, learn tons of info that's outside my line of work, do the everyday things, and it's been especially tough once going back to work was added back into the mix. Not that they're putting upon me, but my folks are really going through it, too (hoping to sell their house, dad's bad off with cancer). In answer to how I'm doing, I guess that I'm hanging in there, usually by my fingernails. Several of the stafflings at my school have been dealing with severe illnesses or deaths of parents. My school has been like a family for the twelve years I've worked there, so that's been another area where my concerns lie. Sleep is an elusive thing lately. I took half a sleeping pill so I could get a short nap this afternoon, and it was glorious. I forgot to mention last night, but *every* night for the last week, I've only been able to get three or four hours of sleep... either one of the kids was crying, or crawls into bed and kickboxes me in the middle of the night, or I just wake up and can't get back to sleep. Then morning comes too early. Under normal circumstances, I'm a morning person. Usually when I hit the rack, I'm sleeping within about half an hour. Someone once told me that when Denise finally starts to really get better fast, then I'll likely collapse and start having stress-related problems (like I didn't since July?). Anyway, I just wonder if this is part of an implosion. So in your pulling for my wife, save some pull for little ol' me, too.

Pass home, Fish dinner, Reglan to be cut

2006-03-03T22:31:00.000-08:00

Here's a picture of Denise & Gracie prepping fish dinner at home. Denise got to come home for a two hour pass. With her caregiver standing by, Denise helped prepare a meal for the first time seven & a half months. Under normal circumstances, not prepping the meal would be a luxury. Tonight it was a triumph, masquerading as an everyday task. Her caregiver, the kids, and our housemate pitched in for the prep, too. Denise even invited some neighbors over for a short visit (the neighbor girl made Denise a very nice get well card and poem, so Denise wanted to be sure to visit with her). The time spent at home seemed too short. We're going to get a pass tomorrow, and maybe even one for Sunday if she does OK.
The doctor and specialists have been consulted about the liver enzymes going up, and it's been decided to cut down or eliminate the Reglan (moves things along in the digestive tract). Then we'll wait & see what the next blood draw reveals about liver function next week. That drug, and possibly another one, can cause liver function to decline. We hope that's the case. It's possible that there's permanent liver damage, too... it seemed that every consent form I signed when things were horribly bad for her included a possibility of liver damage. What we really don't want is for that cocci infection to be festering in the liver. Denise & I have had enough of that fungus. Denise vomited up a little in the morning today and a tiny bit as we arrived at home. She said she gets carsick very easily right now, and was exited about coming home for a little while. During PT today she had to work with a huge therapy ball. Her entire upper body is aching from the workout, but it's worth it.

Liver enzymes up, Dancing & almost hopping during PT

2006-03-02T22:25:00.000-08:00

The liver enzymes did rise, and that's not the direction we wanted them to go. The infectious disease doctor's office was notified of the findings. The next thing we hope for is that the liver function being abnormal is a result of medication toxicity. She's on a couple of meds that can cause some liver problems. My nurse aunt is going to ask about reducing the reglan (for digestion) now that she's doing fairly well in the emesis department (Denise had a tiny bit of emesis late last night, but that's been the only episode for a week). Other meds may be tweaked so we can see what the effect will be on the liver. Since Denise is improving in so many ways, there's a decent chance that meds might be the cause for these liver results.
Last night the feeding tube clogged again (hmm... maybe I didn't flush it well enough yesterday afternoon?). It's possible that they may switch Denise to "food" that doesn't contain any fiber, and hopefully she'll be able to eat fiber-rich food by mouth to make up for it.
Today Denise danced as best she could and almost was able to hop during physical therapy. Those of you that have known her for years won't be a bit surprised. Dancing is one of her favorite things to do. She said she was excited when she was able to walk... now she's really stoked at the notion that it's possible to recover enough to dance again.
Word has it that I've got the OK to take Denise out on a non-medical appointment pass for two hours tomorrow, and maybe Saturday, too. I'll find out if the rumor's true. After we talked about all the places we could possibly visit, her favorite idea was just to go home for a couple of hours. She'd like to finally be involved in eating dinner at home and maybe tucking the kids into bed again.
Now here's an off-topic question: Does anyone that's following this blog have a kid that likes to collect postage stamps? If so, please contact me (pdjwilliams@yahoo.com).
Now here's an even weirder event: I started taking Ambien tablets lately so I could unwind my noggin and get to sleep. As I'm typing this on screen, the lines and letters appear to be moving. Right now, they just started a "trickle down" effect, like in the opening of the movies The Matrix. So I wonder, are the moving lines & letters as I type along simply a result of my perception being impaired by the medication? Or is it a glitch in the Matrix? Either way, I can hardly keep my eyes open and will pass out any minute.

Feeding tube clogged & unclogged again

2006-03-01T21:45:00.000-08:00

Gracie was up much of last night. Actually, she wasn't really awake. But the many times that she came running into my bed, she was doing Judo-sleeping while I was getting kicked in the ear a lot. So I was already very exhausted when I got a call just as I was done at work this afternoon saying that Denise's feeding tube was clogged again. Rather than go to the hospital again, I went to the skilled nursing facility to try unclogging it. They didn't have enough people to assign one to sit and work the Coca-cola back & forth through the tube. Fortunately, it unclogged for me. Also fortunately, some friends from school were able to take the kids for a few hours this afternoon/evening. Gracie & Jacob loved spending some extra playtime with other little kids.
Denise went to an Ash Wednesday service today... her first ever. She also went to her first ever Rosary a few weeks ago. Maybe she'll start eating fish on Fridays, too? Her eating anything, anytime would be good.
The blood draw was done today to check the liver status. Hopefully we'll hear the results first thing tomorrow. In the mean time, please toss up some prayer for that. Also toss up some prayer for our ability to get records. My aunt's been trying to get Denise's med sheet (not what's been ordered, but what's actually been given). She's on the list of people to whom information can be given, but with the medical privacy laws, it's been very difficult to get anything. On top of that, the person at the SNF that's in charge of medical records unfortunately had a family emergency and hasn't been available. My aunt's hoping that by examining the med records sheet, perhaps a pattern will come to light that shows meds might be the reason why the liver function is questionable, and this might save Denise needing to go through a liver biopsy to check for cocci in the liver. And we really don't want that cocci to still be active anywher. I'm encouraged by something the infectious disease doctor said a few weeks ago, though. It'd be hard to imagine that the liver is harboring a cocci infection while Denise is improving in every other way. Again, one more thing for some caring and prayer-ing.

Walking with IV pole, Playing catch, Fish taco

2006-02-28T22:13:00.000-08:00

The kids & I got to visit with Denise during one of her physical therapy sessions again today. So here's a picture of the kids playing catch with her. This photo turned out better than the one I was going to post yesterday (by the way, this photo and all photos on Denise's blog can be enlarged by clicking on them). The PT let Denise know that he thought she was steady enough that she could walk around while pushing her own IV pole. He also indicated that it's not a problem for the kids & I to be there. So if the afternoon PT session is the same time each day, I'm going to try to get the kids there after school so they can have some play time with mommy.
Also good news is that there was no emesis today. We even had a friend do a taco run for us so we could all have dinner together at the SNF, and Denise ate one and a half fish tacos. Not too shabby. The feeding tube's being flushed regularly with the water, followed by Coke. Let's hope that it doesn't develop any more clogs.
As far as concerns go, the blood draw for liver enzymes was what we were sitting on the edge of our seats for today. But there were no blood draws for the liver today (I guess they woke Denise up about 5am, but then didn't have the proper paperwork and orders?), nor for the blood workup yesterday. So hopefully tomorrow those will get done through the PICC line so they won't have to stick Denise twice. The elevation of the liver enzymes is a concern. Last week those numbers were lower, going in the direction that we'd like them to go. But they were still too high. Pull for those numbers to get back to normal.
They celebrated Mardi Gras at the SNF today. One of the residents gave his shiny necklace & mask to the kids. He's been greeting Jacob with "high-fives" for the past couple of days. They've been making friends with each other. Here's a picture of Jake wearing those beads and mommy's hat. He's got his Snoop Droopy Drawers rapper persona going on.

PICC improved, Foot circulation? Homesick, Party planning

2006-02-27T23:49:00.000-08:00

The PICC line insertion site looks better than it did yesterday. Again today, just a little food went down, but it stayed down. She' been hurl-free since last Thursday! Yay! Yay! Yay! Unfortunately, the feeding tube was left off for a couple hours this morning, so Denise lost out on some calories. Also regarding the feeding tube, we need to clarify some directives about using Coke in the flushing of the tube. We don't want all that valuable research we did on Coca-Cola during Friday night's j-tube clog to be wasted.

I forgot to mention that ankles & feet have been getting a little discolored & a little swollen during the past few days. Could be due to cold, hopefully not a circulation problem. Last blood pressure I heard was 120/80. Still, we'll bring the concern up to the cardiologist during the upcoming appointment. It's hard to imagine there NOT being good circulation, though, as she's getting plenty of exercise during PT & OT sessions. I guess that after she got a shower today, she went to PT before her feeding tube dressing was put back on. She said that felt a little weird to have that that thing flapping around while trying to walk. I saw her stepping sideways today. She'll be doing country line dancing in no time (I'd better break out my earplugs). By the way, I took a picture of Denise & her physical therapist tossing a beach ball back & forth, with Gracie & Jacob playing with some other PT equipment in the background during today's visit. But it's super late, so that picture will have to wait. It's about 11:40 pm and Jacob finally fell asleep. He has a gnarly case of gas tonight that's kept him & everyone else awake. Hopefully he's done for tonight. I'm pretty worn out (I feel better now than I did yesterday, though).

Denise asked tonight if there was a goal set for when she can go home. She misses the kids & me and is plenty sick & tired of the hospital life. Sure, she won blackout Bingo again today (she's getting good at that... maybe I should have a trophy made for her), but it's a triumph that can bring only so much joy in this situation. I told her that everyone wants her home. Based on what happened the two previous times, we don't want her turned out before she's ready to be home successfully, though. Neither the doctor nor the insurance people were able to be present at the last care planning meeting. Hopefully we'll be able to touch base and find out specifically what criteria she must meet before being considered for a discharge from the nursing home.

Jacob's turning two (and Denise is turning thirty-three) in April, and Denise is trying to plan Jacob's party from a hospital bed, as she tried to do for Gracie. Hopefully she can work out the final details from her own bed at home, right? She picked a jungle (uh... er... rainforest) theme. I thought it'd be funny to tape banana leaves to Jake's diaper, give him a spear, and take a picture of him as a pygmy. If Denise buys the idea, you bet I'll post a photo. Anyway, if anyone's got any jungle-related goodies that we could borrow for the party, please contact me (pdjwilliams@yahoo.com).

Food down, PICC line looks iffy, Communion finally

2006-02-26T21:27:00.000-08:00

The feeding tube is still chugging along. Oral food intake was again minimal today, but what went down stayed down. It'll be interesting to see how much she weighs tomorrow. The PICC line insertion site looked a little bit red, with what looked like pus. It was hard to see under the dressing, though. We let the nurse know, she changed the dressing and cleaned the site, and hopefully there won't be anything to write about that for quite a while.
Today there was a little afternoon church service. Denise took the first communion since before getting sick. That was a milestone. Afterward the chaplain chatted with us and prayed for Denise for a while. It turns out that this chaplain serves in the horseracing world, and he knows someone that used to work at Pasadena Christian School that went to be a chaplain at a racetrack in the South. He and his wife (from PCS) lost everything they had during this past hurricane season (our school took up a collection for them, too... email us if you're interested in contributing). The chaplain said that our PCS buddy told him that he felt he was lead to that region of the country and went through losing everything in order that he'd be better able to effectively minister to others that went through the same thing. That brought to Denise's mind something that her caregiver said yesterday:
"There's no testimony without a test, and there's no message without a mess."
We all know what that's about, don't we?
I'm glad there wasn't much else earth-shaking to write about tonight. I've had bad headaches since last night (I very seldom get headaches) and I'm running a low fever. So I'm trotting off to bed. G'night!

Tube pain gone, No vomit, Helicopter

2006-02-25T22:47:00.000-08:00

Not much medical news today, but she had plenty of visitors (yesterday, too). Here's a picture of Denise standing with one of her visitors. Ain't that great to see her standing? It makes me think back to the days when her blood pressure was almost unworkable and I would be excited to see her bed tilted up just a couple of degrees. She's come a long way... thanks for pulling for her!
The pain in the ab/feeding tube insertion site is gone. This might be due to cutting that last stitch yesterday and the suppositories for BMs (Denise is SO going to kill me when she reads this blog one day). She supplemented her feeding tube "food" with real food by mouth, and it stayed down. Yay!
Late this afternoon an L.A. County Sheriff rescue helicopter landed on the field of a school that's by our house. The kids, my friend & I all walked down to the corner to see what was going on. A few minutes later some emergency vehicles arrived. We assumed there might have been an auto accident, or a car-pedestrian accident on the walking trail along the roadway. One of the neighbors that was watching the goings-on all of a sudden said, "I hope that's not for my wife," and he hustled down to get a closer look. I thought it was cool that he thought of that, and I found myself probably a little more concerned than the other lookie-loos, being a guy that knows what it's like to be worried about his wife. The neighbor came back; I assume his wife is fine. Eventually a person walked out of the ambulance and was escorted into the helicopter. A few minutes later, another person was wheeled to the helicopter, taken in, and the helicopter took off. I haven't seen the news & don't have any idea what happened. But they wouldn't have gone to all the trouble if it weren't pretty serious & urgent. So toss up some caring & prayer-ing for that total stranger tonight.

CT scan results, Stitch removal, J-tube clog, Coke trivia

2006-02-24T23:59:00.000-08:00

Results from the most recent CT scan: The feeding tube is where it should be, stool backed up (suppositories taking care of that now), small amount of ascites in the "right pericolic gutter." I had no idea that a gutter was part of the anatomy. I learn something new every day.
Denise complained of pain so much at the insertion site for the feeding tube that she didn't want to do physical therapy today. The interventive radiology people removed most of the stitches holding Denise's feeding tube in when they unclogged it the other day. So my aunt got permission to remove the last stitch. Hopefully that'll work.
The j-tube clogged again tonight. My aunt worked for a good hour & a half, using Coca-Cola and a syringe to eat away the clogged "food" so Denise wouldn't have to miss feedings & have to go the hospital again. During that time, I noticed that the bottle of Coke was probably a bit flat & warm, since it had been used for at least a day (they only flush the j-tube with a little bit of Coke at a time). I remembered a science class from high school in which the teacher told us about acid rain being similar to the carbonic acid, like in soft drinks. I thought that if the carbon has to do with the acidity, then the flat bottle of Coke might not be as efficacious as a fresh container of Coke. So my uncle (an engineer-sort) spent plenty of time on the phone & Internet late tonight trying to figure out if that was the case. He found some info to support that notion and other info that indicated that the phosphoric acid in Coke is what would eat away the food in the tube. He also found out that a can of regular Coke will sink in water and a can of diet Coke will float. And Coke has the highest acidity by far among the major soft drinks. I think that one of my eighth grade students should do their science project about Coke and set the record straight. At any rate, I ran to the 7-11 very late and picked up a case of cold Coke (colder soda retains more carbonation than warm), and my aunt tried using the fresh Coke in the tube. She worked it in & out for a few minutes, then gave me the syringe because her hands were hurting. I only gave it one or two pushes and pulls, plenty of plaque came out of the feeding tube, and the Coke went right in. The clog was cleared. Now I can be a doctor. Or a roto-rooter guy. So the feedings resumed and Denise doesn't have to leave the nursing home to go to the hospital tonight. Whew!

CT scan, Ab pain, Caregiver connection

2006-02-23T21:04:00.000-08:00

Denise went for a CT scan to find out what's going on with the enlarged liver, two masses found during the ultrasound, etc. Denise also complained of pain at the insertion site of the feeding tube. We'll have to wait for the results. My aunt the nurse took Denise for the appointment and took care of her most of the day. After the car ride, Denise threw up. Hopefully it's just that pesky stop & go traffic making her sick.
Denise's caregiver today was someone she'd never had before. It turns out that she goes to the same church we do and knows some of the people at Pasadena Christian School, including the "prayer moms" that came to uplift Denise so many time. On top of it all, she's also on the church's prayer team and has prayed for Denise many times since this all began, but had no idea who Denise was. Until today. Neat, huh?

Feeding tube OK, Liver labs better, PICC better, 97 pounds

2006-02-22T22:18:00.000-08:00

It's been a few days of waiting, but the news is encouraging...
Feeding tube fixed:
Monday Denise went to Huntington Hospital's radiology department so they could see what might be wrong with the feeding tube. Fortunately, it was just clogged again. They took care of the problem by pushing Coca-Cola into the tube until the acid ate away the clog. She used her walker to get from the parking lot to the office. As if that weren't impressive enough, she also wanted to visit Kidspace Museum and walked around there. We even were able to hold hands while Denise's caregiver carried the walker. The Taco Bell run didn't go very well. She threw up her slice of Mexican Pizza. I know, I know. Taco Bell isn't Mexican. And if it were, they'd have no business selling pizzas. Then she went back to the nursing home and did well overnight. We also found a cheaper version of ScandiShake (sprinkle-on calories) that tastes good and is helping Denise get some weight back.

Liver Enzymes heading back down to normal:
We found out today that Denise's liver numbers changed for the better, enzymes lowering considerably. She's still not as normal as she has been, but we're glad that the numbers are heading toward normal. Another liver lab blood draw will happen in a week.

CT Scan on deck:
There is a CT scan early tomorrow morning that will hopefully shed some light on what's going on. While we're optimistic that it won't reveal anything we didn't already know about, we'd still appreciate some pull from everyone on this one. We don't want anything new to show up, especially not anything majorly nasty.

Other neat things:
The PICC line insertion site is no longer red. We were worried about infection. Now it looks like there's not much to worry about there. Whew!
Denise had plenty of visitors over the long President's Day weekend, her parents among them.
Episodes of emesis have been declining again, and today Denise weighed in at 97 pounds.
Denise has been having a caregiver for twelve hours during the day, then doing nights alone, and it's been going fairly well. In fact, she said that it's been easier to get someone to help her at night than what it was during the day before the caregivers started coming. I guess that during the night, almost everyone's drugged up and asleep, so the staff, even though fewer of them, seem to respond faster to the call buttons. Go figure.
She won BINGO three times today. She keeps doing this. That's starting to scare me.

7 Months, Masses found, Retina damage, J-G tube not working

2006-02-18T23:36:00.000-08:00

Today (Saturday) marks seven months that Denise has been in the hospital.
Lots of things happened since the last post. Here's the rundown:

Thursday:
Ultrasound showed enlarged liver, enlarged spleen, two masses. CT scan will be performed in a couple days to find out what's going on. We're not worrying about these until we know there's something to worry about. Enzymes continue to be high, and this may possibly be a manifestation of the cocci again, or toxicity to the meds that fight the cocci. It's a "darned if you do, darned if you don't" situation. The silver lining is that *if* this is more Valley Fever infection, the dosage of the anti-fungal meds can still be increased. And I think that if the liver function is whacked out as a side effect of the anti-fungal meds, perhaps the meds can be decreased. Another liver test will be preformed next week. If the enzymes are still high, a liver biopsy may be on the horizon.
Opthalmology appointment showed that the right eye does have 20/20 vision, normal field of view. Left retina does have damage. Denise described vision through the left eye as being black with a spotlight that allows her to see. She had to scan lines on the eye chart in order to read. We rescheduled an appointment with a retina specialist.
Denise had a bit of pain at the site of her feeding tube today and yesterday. That's a new complaint. She also had a little bit of red around the insertion site of the PICC line. She was itching it, too. I wondered if a little bug crawled under there and bit her or something. But it's probably a bit of infection. Hopefully it's just at the surface, not far in along the PICC line. Also, we found that the covering for the PICC line hadn't been fully removed the last time it was changed, so it was not letting the PICC insertion site breather and was causing some irritation for her.
At night Denise & I got a neat surprise that was planned by some folks from my school. We were serenaded by a singing family. Valentine's day stretched out over a few more days for us!

Friday:
Back to the ophthalmologist. They took pictures of the insides of Denise's eyes. They show that there is permanent damage to Denise's right retina (but with new glasses, the vision is corrected nicely). The left retina shows inflammation (possibly infection... let's hope not the cocci). The ophtho people that visited Denise at USC didn't have the ability to take pictures while in Denise's ICU room, so there's nothing to compare today's pictures with. Could be damage that's getting better (Denise has indicated that she thinks her vision is better since USC), or it could be getting worse, or staying the same. So we'll have to take Denise back again in a couple weeks for another set of pictures. The waiting game has begun.
We had a care planning meeting with several people that are helping Denise. Reps from the medical group & the SNF doctor weren't able to attend, but we still were able to cover plenty of ground. We still don't know how long Denise will be in the SNF. She is progressing well in each of her therapy areas, though.

Today (Saturday):
We interviewed some people for care when Denise comes home. We'd appreciate your prayers for wisdom on this one, as everyone we talked to was qualified and seemed wonderful. We're looking for a good fit for our needs, but we don't entirely know what they'll be yet, nor when home care will start. I know that it's a bridge we'll have to wait to cross. We're just paving the road to that bridge, I guess.
The feeding tube stopped working today. No food is able to go in. It's possible that there's a clog. It's possible that the tube migrated, as it did at Huntington Hospital. It's not an emergency, so they're increasing Denise's IV fluids and even encouraging her to try eating more soft food by mouth (she even ate some pastrami sandwich). She's done well so far with keeping food down. Let's hope that continues. We have to get in to see a radiologist and have this fixed. We were told it couldn't get scheduled for today and chances were slim that we'd be able to be squeezed in tomorrow. Notice that it's a three-day weekend, so my guess is that Monday's out, too.
And through it all, Denise is still in good spirits.

Sit & stand, Gall bladder ultrasound tomorrow

2006-02-15T21:17:00.000-08:00

Here's a neat picture of Gracie & a couple of her new friends from the skilled nursing facility. The dog is a toy... batteries make it appear to breathe. The nice lady is real. She always lights up like a Christmas tree and smiles when the kids come with me. Gracie & Jacob seem to like the extra attention they get whenever they walk into the place. They're kind of like pint-sized celebrities.
Overall, a very good day for Denise. Someone, a total stranger until today, had visited her and gave her a big basket full of Avon goodies with which to pamper herself. (Thank you, but you're making me look bad). :O)
She just called me earlier this evening to say that she scored 100% on her physical therapy task test. Her big accomplishment today was sitting down into and standing up from a chair *without* using her hands. She did a set of ten. Her walking is getting less wobbly, too. Hopefully they'll let her walk around without a walker or cane soon... just pushing her own IV pole. Speaking of medical equipment, we did find the wheelchair and cushion with another one of the newer residents. Whew! She's in good spirits about all the progress. Topping things off, there's been no vomiting today that I'm aware of.
At 10:30am tomorrow morning she's going for a scan to see what part the gall bladder may or may not be playing in her emerging liver problem. Her liver enzymes are high. They're not nearly as high as she's had in the past, but we don't want to get anywhere near that high. Sorry, but once again I'm without specific numbers for any of you out there that are hep to hepatology. She has to go to another facility to have the scan done. My understanding is that it'll be done at Arcadia Radiology, which is affiliated with Arcadia Methodist Hospital (where she began her struggle), if not at the hospital itself. At any rate, please pray that this liver problem is something mild and/or easily remedied.

Valentine's date, 92.2 pounds, Liver enzymes elevated

2006-02-14T21:27:00.000-08:00

Tonight's picture is from this evening's Valentine's Day date. I've never been on a date to a nursing home before. Hopefully this is just practice for doing it again with her decades from now, right? We got all dressed up, I brought a card & flowers, and I gave Denise a CD of Billie Holiday singing love songs. We danced to You Go To My Head (Denise's favorite from the CD), among others. She had that feeding tube attached, so we couldn't do any fancy moves. That's my excuse. I can't do any fancy moves, anyway. That's Denise's department, as she's the dancer. The wonderful thing about swing dancing is that the guy's part isn't that tough. The gal's part is much flashier, and makes the couple look like they know what they're doing. But enough of that. Here's what went on since the last post...
Denise's folks came for a visit on Sunday & Monday. They hadn't seen her in two or three weeks. Denise, her folks, and my mom all went to several of the craft sessions at the home and made Valentine's goodies.
Today's weight was 92.2. I was hoping that the weight would increase faster. In a perfect world, Paypal would have a way to send Denise pounds & ounces over the Internet.
She's still been throwing up once in a while over the last couple of days. It's usually not very much, and she thinks it's been caused by thick phlegm from her cold lately. Yesterday she had to try to eat a zinc pill that had been crushed and mixed into applesauce. There's apparently no option for IV zinc that's not in TPN, nor should it go down the j-tube, as the granules would clog it. Fortunately, the speech therapist thought that if ice cream does well, applesauce would be a reasonable next step.
The liver results came back showing that the liver enzymes are elevated. I have to get the specific numbers, and we're going to see if we can get the doctor that's associated with the SNF in touch with the USC hepatologist. At USC, they gave Denise bear bile (urso) because of sludge building up, and that might do the trick for her again here. Remember that a couple days ago the GI doctor noted that the liver was enlarged. The ID doctor commented that it would be hard for him to imagine that the liver was harboring the cocci while she's getting better everywhere else. So as has been the case with Denise all along, she's just filled with little surprises. She's kind of like a piñata that way.
It's been an eventful couple of days around the SNF, too. Sometime yesterday or today Denise's wheelchair and seat cushion went missing. They are rental items. There are so many wheelchairs there, it would be easy to see how someone would grab any available chair in a pinch. I put stickers with our name & number on Denise's chair, so hopefully we'll find it. On a more somber note, yesterday there were emergency vehicles there when I arrived in the morning. As I left, I saw cars arriving and the people getting out were crying, so I assume the emergency vehicles were for their loved one and I also assumed the worst had happened. It reminded me of the ICU waiting room at Arcadia Methodist. Then tonight just as I arrived for our date, a "code blue" was called over the intercom. I actually got light-headed and felt tingly for a moment, as it reminded me of when that code was called for Denise in ICU in the early days of her hospital stay. The staff at the SNF snapped into action and things got better for that resident.

No news is good news, Relaxing Sunday

2006-02-12T17:45:00.000-08:00

Just a quick post to say that no news is good news so far. The only mild downer is that in spite of me wearing a mask when I visit, Denise has caught the cold that's been making the rounds at our house. Aside from that, Denise had a relaxing day with no PT or OT, but went to some of the activities to make up for that. Denise was disappointed because devotion time this morning didn't happen, but enjoyed making Valentine's crafts, getting her fingernails painted, and doing the "workout in a chair" with some of the other residents. Now when I visit with her and we go around the facility, she's greeting more and more people by name. I'm glad that she's finding so many people with whom she can interact.
Since I haven't had to clean Jacob's mouth out with soap yet today, we'll go to Chuck E. Cheese tonight before going to visit mommy!

New glasses, Retina damage, ID appt, Many thanks, Haircut & first sentence

2006-02-11T22:25:00.000-08:00

Friday Denise got to leave the SNF to go for two appointments. She missed out on a few hours of feeding (and much-needed calories), but we did get to Costco for an eye exam and then Lens Crafters for some glasses. Yes, Lens Crafters is not the frugal way to go, but Denise hasn't been able to see for almost seven months, and we thought that a little instant gratification was in order. The glasses definitely help, but not as much as we'd hoped. The eye doctor said that the right eye seems to be OK, needing only a slightly different prescription. The left eye, however, does have some retinal damage. With her right eye covered, Denise described looking through only her left eye as having a spotlight on one part of the eye exam chart. She had to turn her head & look slightly sideways in order that more of the eye chart could be revealed. This may or may not get better. We are encouraged by her feeling that her vision has improved compared to what it was during her USC stay.
The other appointment was earlier in the day with the infectious disease doctor. Though certain lab results that he's concerned with haven't changed much, he was very encouraged to see how much better Denise looks and acts, as well as the fact that she's not experiencing some of the common side-effects associated with the fairly high dose of antifungal meds she's on (800mg/day of diflucan... 1000mg is about the max they might try if needed). Apparently many people experience dry mouth and lips, and hair loss. She said her mouth feels fine, and her hair is definitely coming back in. I told him what one of the ID doctors at USC told me about not finding anyone any other pregnant woman that's survived what Denise has been through, and asked if he knew if this was indeed true. His opinion was that it was reasonable to assume that others have survived, but it just hasn't made it into journals. I guess it follows the general flow of news, in which things going well and/or getting better don't get the attention that a crisis or negative events get. Newsworthy or not, I'm glad that Denise is still with us!
Today was a restful day for her. She was still tired after all the activity yesterday. In fact, today was utterly uneventful for her. Peace & Quiet. Rest. Feeding. No emesis. That's the way we like it.

I'm one thankful guy today. Since pointing out the link to the Williams Family Fund the other night, several people have blessed us with contributions. In the mail today, we received a Valentine's Day card with a money order for $100 from a very generous person that simply signed it "A Friend." I've been privately writing thank you notes (slowly but surely) to the people that have helped us during Denise's hospital stay. To "A Friend," here's a public "thank you" for you. I can't believe I forgot to mention two biggies last week. I posted a request to borrow a chest freezer for a while for storing pre-fab meals. The request was answered by a family from my school, who provided a freezer for us. I thought they had a used one in their garage that they'd bring by. Last Saturday a delivery truck came by with a brand new upright freezer! It's now filled with a bunch of frozen ready-to-go meals that are making my life much easier. Also last weekend, the kids got a new play house. The story behind it is really cool. At Christmas time, some parents from my school told me that each year their kids get a gift from the grandparents, and the grandparents also give the grandkids money that is to be given to whatever charities they like (I told Denise about it and we agreed that we're going to start doing that with Gracie & Jacob). The school kids wanted to donate their money toward a playhouse for Gracie & Jacob for Christmas. It arrived last weekend, giving Gracie & Jacob a big long-lasting Christmas surprise! Thanks, kids (you know who you are)! We also kept the boxes from the playhouse & freezer so the kids could play in them, too. Big thanks: Tonight when I was visiting Denise our conversation turned to how bad things were for her, as it does from time to time. I have a picture stuck on the wall from when we lost the baby, and Denise has all the tubes & needles in her. It's a tough picture to look at, but I've tacked it up everywhere she's been so that the staff at each hospital can see where she came from. Seeing it on the wall behind Denise, who was tonight sitting up, smiling, joking around with me, being animated and able to interact with me, made me about as thankful as a guy can get. The difference between where she was almost seven months ago and where she is now is astounding. As if the financial help, freezers, playhouses, housework, childcare, food, and everything else weren't already enough, thank you all for your prayers & caring. Thank you, thank you, thank you.

Finally, some light stuff: I've been busy trying to play catch-up with all the paperwork that's been piling up & trying to start taxes. And I gave Jacob a haircut yesterday. He was a good-looking kid... too good-looking. Frequently when I've been out with him, people have asked if he's a boy or a girl, or even asked how old *she* is. Yesterday I had about enough of that, so I made sure to give him a haircut that only a father would inflict upon his son. I started with a Mohawk, but couldn't find the camera. Then I buzzed the rest off. The vibrating of the clippers tickled him, and he was laughing most of the time. Gracie loves Jacob's peach-fuzzy hair. Denise asked, "What did you do to his hair?" She didn't much care for what I'd done. I told her that I'd done it twice before, though maybe not quite so close, and she never said anything about it. It was brought to my attention that this is because she was in a coma. Point taken. The kids are with friends for the weekend, and they said that the only thing his new haircut does is make his long eyelashes stand out even more. So I guess my plan backfired. And I was notified tonight that Jacob reached a milestone today, stringing three words together:
"Darnit, Bob! Please?"
But he didn't say "Darnit." And he keeps repeating the phrase. At least he's polite about it, though, huh? I thought to myself, "Have I been frustrated with Bob, my right-hand man that's been staying with us, and uttering things that I ought not?" Honest, none of us know where he picked this up from. I'm blaming the friends that have him for the weekend. They're probably blaming the haircut. Either way, we can't wait for the kids to come back home tomorrow so that we can hear Jacob for ourselves. I'm told that when I was about Jake's age, one of my dad's friends picked me up in his arms and I called him a "baffard." At least Jacob can swear better than I could at his age.

GI appt., ID tomorrow, PICC OK, Family Fund

2006-02-09T21:38:00.000-08:00

Denise got out of the skilled nursing facility to see the GI doctor today. He was encouraged by how much progress she's made since the feeding tube was put in. He also thinks that based on the info we have, it does appear that SMAS was the problem, and putting on more weight via tube feedings will eventually correct the problem of throwing food back up. She did have two vomiting episodes today. That's been unusual, as the last few days she's had either one emesis or none at all. She weighed in at 91 pounds with clothes on a couple days ago, then 93.5 with clothes & shoes today. He noted an enlarged liver (been that way ever since USC, at least), and wondered if the cocci might still be present there.
We've got an appointment with the infectious disease doctor tomorrow. That's very important, and she'll probably be followed by I.D. doctors and be on antifungal meds for life. While at USC, one of the doctors said that Denise was the only woman that he could find record of that survived going through the third trimester of pregnancy with a disseminated cocci infection that went to the brain. So her case might get written up in medical journals and the info used to hopefully increase the chances of survival for any other unfortunate pregnant women that go through what Denise went through.
Also tomorrow, we're running Denise over to the Costco for an eye exam and some glasses. We hope she has the energy after her ID appointment. Our hope is that a new prescription for glasses will help her vision somewhat.
The PICC line problem that crept up the other day has been resolved. It might not have been clogged, but might have been blocked by migrating up against a blood vessel. I guess that they can be twisted, pulled, and I don't know what all else, resulting in temporary blockage. More twisting and pulling probably fixes the problem, too. Anyway, we want that PICC line to remain in service because Denise is still having some electrolyte problems from time to time (calcium too high, mag too low).

I've refrained from mentioning the following information in the blog, and am hesitant even now. A couple months ago my school set up the Williams Family Fund for Denise to help with the extra expenses that have come up since the hospital stay started. Those expenses are mounting. If you are so lead, there's a link on the right-hand side of this web page that will give you more information about the fund. And that's the end of my shameless plug. :O)