Full day at home, Retinal inflammation gone

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!

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!

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

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

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...

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

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

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

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

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,

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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

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...

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

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

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

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.