Kids visit USC Hospital for first time

Late this afternoon we got the OK to let the kids visit Denise! We had to put the kids in gowns & gloves (Denise wore the mask), but they got to see mommy for the first time in about a month & a half. I brought home the garb a few days ago so that Gracie could get used to suiting up. As it turned out, Jacob was the first to see Denise tonight. As with every visit, he was a little apprehensive, but did well considering that he's only 18 months old. He recognizes Denise when I play the videos of her in the hospital on TV, but he took a long time to warm up in the hospital setting. It wasn't until the end of the visit that he started blowing kisses. Gracie just snuggled right up, no problem. She still wants to be a nurse, or maybe a doctor.

Since there are no longer all the monitors that were hooked up in the ICU, it's harder to know what all the stats are. She looks stronger, voice is sounding more & more normal, and she's not feeling "out of it" as much.
The current concerns that I'm aware of are:
- vomiting: it's hard for her to hold much down. My understanding is that she is still eliminating, at least.
- vision: she's due for another eye exam in the coming days, and her vision's still blurry, even with glasses.
- ab swelling: possibly due to lack of protein. She needs to wait to have fluid drawn off until blood thinner meds are lowered or discontinued. In the mean time, the swelling is putting lots of pressure on her innards, possibly adding to the vomiting issues.
- heart rate still fast
- regular hospital room care: Being out of ICU is a two-edged sword. She's not bad enough to be in ICU. Great. But on the floor, each nurse has to take care of more patients. So Denise gets to feeling pretty rotton during the waits at time.

Yesterday she told me that while she was in ICU and feeling really loopy, she thought that my hair looked just like meatloaf. She's been going without food for WAY too long. She also told me again to not put up all the cards. She was worried that other patients would think she was being obnoxious. She joked, "Look at all the cards I have up! Look at how important I am!" Darn tootin'! Still, I'm abiding by her rules and keeping the walls modest (in this case, modest means NOT covered up). I only have photographs of her & the family up so that the caregivers can see what Denise looks like when healthy.
Also yesterday we did an art project wherein Gracie colored some circular sheets of paper. Later on we'll send them to a company that puts the designs onto plastic plates. Last night Gracie really wanted to go to the Saturday night service instead of waiting until Sunday morning. So we went, dropped off Jacob in the nursery, but Gracie was feeling clingy and wanted to stay with me for "big church." When they took up the offering, she got all excited about getting to pass the plate by herself. Today she wanted to make another design to be turned into a plate. This time she did a big red circle in the middle with yellow all around the edges and told me she was "trying to make a money plate like from big church."

Details: Out of ICU, Trach gone, Bear bile

Good morning! Here are details to accompany last night's headlines about Denise's day yesterday:

Her temp spiked at 101 (curve continues to lower), and she reached a "normal" 98.7 for the first time in months! We hope this indicates that the infections are subsiding or done. Heart rate ranged 91 (relaxed) -122 (when in pain or working out). Blood pressure ranged 104-116 systolic, and she no longer has to wear the cuff 24/7. She needed no oxygen while sitting upright (which she spent several hours doing), and only needed .5 liters while laying down (and saturating at 95% during that time). Earlier in the day she said that she felt like her nose & ears were clogged, but by the evening, she felt all clear. She did vomit yesterday, but I was there for it and saw that the first thing up was a big ball of phlegm, then the food (let's see... cranberry juice, jello, broth... I think in that order). Denise said she wasn't nauseated... it only happens because of the thick mucous. I heard a suggestion to suction her well a while before she begins eating, and eat one small course at time to keep the hurling to a minimum. We shall see.
The liver people came in today (somebody please post the correct name for a liver doctor) and said that her liver is enlarged but should shrink back to normal size over time. The liver numbers are abnormal, but they are heading toward normal. There have been "blips" in those numbers, however. Apparently there's sludge in the bile, so they're giving her ursodiol, or "urso" as the docs call it. It's a naturally occurring bile acid. We have it, but bears have even more of it. Think about it... ursa major, ursa minor, urso... So she's getting bear bile to correct the sludge problem. Pretty cool, huh? If she starts pilfering picnic baskets, we'll know why.

During PT, she stood up 3 times. This is the first time she's stook in months. She likes that the sneakers helped her ankles regain their bends. But she doesn't like wearing them when she's laying down, because they're too heavy for her to be able to exercise in. She's strong enough to use weighs for arm exercises (a flashlight... a drink can...) with the OT. The PT also does wound care for her bedsore. Yesterday they put in that custom-fit sponge that's hooked up to a vacuum pump. Denise says it feels weird & hurts, but so does everything. Along the lines of her being able to verbalize what she's going through, I received an email from a prayer mom (actually, one of them's not a mom from my school... she just got lumped in with them). She said that while it was thrill for them to hear Denise finally able to speak, it was heartbreaking to hear her express her pain & discomfort. Bittersweet, for sure. She is being offered pain meds, but she hates feeling "out of it" and refuses unless it's unbearable.

Her trach was removed, and the hole bandaged earlier yesterday afternoon. Her mom & her kept it as a surpise for me to discover during my evening visit. Sneaky stinkers. But it was a wonderful surpise indeed! When I noticed, she said, "Surprise! Yay!" and clapped her hands. She says it feels much better without the trach, and it's even easier for her to breathe & speak. Last night when we were praying, she prayed out loud for the longest time she has since going into ICU.

Denise's biggest news was the move off of the critical list, out of the ICU, and into a regular hospital room. That's a milestone. Seems like a thousand-milestone. They even let me help participate in the move (thank you!). Now she's in a private room (the chaplain pointed out that we can close the door & curtains... hubba hubba (Go, Chaplain!). The procedures are mostly limited to the daytime. Things will be dim & quiet at night. There's a big window with a view of the city lights at night, and probably just smog during the day. This room is even smaller than the ICU room. My fears of running out of wall space were quelled when Denise said that she didn't really want me to put up all the cards again, since she can't see them anyway. Instead, we came up with the plan of having some photos printed up poster-sized and putting those on the walls.

Out of ICU, Trach gone, Stood up, Normal temp

I'm exhausted and will provide details tomorrow. But today's progress was so great, I couldn't wait to post the headlines:

-Moved out of the ICU and into a regular room!
-The trach was yanked!
-Stood up 3 times with help from PT!
-Temperature hit 98.7!

Room 753 - must still wear gloves, gown, mask
Preferred visiting hours are 11am-9pm (she's been asleep by 8:30 lately)

Move on hold, Bedsore vac on deck, Massage,

Denise hasn't been moved to another room yet. She threw up what the nurse said appeared to be undigested medicine. She won't get to move out of ICU until she stops doing the technicolor yawn. So she drank barium and went for the x-rays. She wanted me to be sure to point out that she not only drank the barium, but DIDN'T throw it up. And if she wanted to throw up anything, that was the top candidate. She said she was miserable for the ride to & from the room for that process. She had to be on her back on a very thin pad, making her bedsore ache more than usual. Anyway, the early unofficial word is that there's no ileus. Later one of the x-ray guys came to her bedside with the machine, I assume to see how the barium was progressing. Instead of rolling her on her side, placing the board, and rolling her back, he slid the board under her, and that caused some grief when it hit her bedsore. They're going to try a fairly new idea in getting that bedsore healed up. They have a vacuum that attaches to a custom-fit sponge that goes into the wound. Then it sucks the wound closed. Just kidding. But my limited understanding isn't much better... I guess that it increases the circulation to the area, keeps gunk from building up, and helps things heal quicker. We're all for that.
The prayer moms came again today. One of the moms couldn't make it, but they brought a massage therapist as a ringer, so that was cool. Denise loved, and I mean LOVED getting massaged by someone that actually knew what she was doing. She also brought some essential oils for some aromatherapy, so it didn't smell like a hospital for a while. Not only did they bring church to Denise's bedside, they brought a spa as well. Beats the heck out of coffee & donuts after service, if you ask me.
I don't really have much more about Denise today. There were tests, procedures, delays, frequent stepping out... I really didn't get that much time with her during the hours I was at the hospital. I did pick up a cool little voice recorder for the iPod, though, and recorded some of our conversations so I could figure it out. Denise recorded a greeting for you all to hear, and I'll post a link to it as soon as Webmaster Mike & I get the chance. I love that I can speak with her again, as do the kids. I call so they can say "Goodnight" to her every night.
Tonight before dinner, Gracie prayed, "Dear God, I don't want mommy at the "hostable" anymore. Please bring her home. Amen" Out of the mouths of babes, huh? All the words I speak & think during prayer boil down to just that.
Side notes: Denise's dad had to drive back home today for a root canal. He's been making do for quite a few weeks with a busted up tooth. And I just found out a day or two ago that Denise's uncle had a heart attack that kept him from going on a trip to Florida (heart attack or hurricane... take your pick). He's doing much better now.

Ready to move out of ICU

Big news today is that the doctor put in the order to get Denise out of the ICU. She would have moved out today, but there was no private room available to put her into. Hopefully she can move out tomorrow. So we're taking down the cards & pictures again, and will put them up in another room. Denise is worried that so many cards might make the other patients feel bad (she does have the most obnoxiously decorated room in the ICU).
She started a liquid food diet today. Vanilla pudding, squash soup, jello, juice... yummy stuff. Until she threw up tonight. She told me that because of throwing up, that may delay her move out of the ICU.
The MRI results were mixed. From an infectious disease department standpoint, the swelling decreased. Very good. From an opthomology department standpoint, there's no change. "No change," according to the notes that a nurse could decipher, included pupils being two different sizes and rechecking the retinas in 1-2 weeks, sooner if there's pain or a decrease in vision. This morning Denise told me that she thought the opthomologist told her that she had damage - lines in one eye - from a fever earlier on. I don't know if that's actually what she heard, of if she was confused. The aforementioned MRI notes didn't clue us in, either.
She got a new PICC line today, and an x-ray to verify correct placement. The bladder catheter was removed, then reinserted because she wasn't urinating. Immediately upon reinserting the catheter, the urine flowed. The nurse said that this is common with patients that have had a bladder catheter in for so long. But with some bladder exercises, she's expected to do just fine.
Sample vitals: Heart rate 111, blood pressure 134/65 (using a leg cuff), temps in the 99 range (spiked at only 101.2 last night). White blood cell count is normal, hemoglobin is 10 (no transfusions for several days, but is getting procrit), hematocrit 31.
We tried Denise's high-top sneakers, and indeed she said that they are a half-size too small. She felt this especially when PT tried standing her up. I trotted off to the women's shoe section of a department store and bought her a new pair of Converse Chuck Taylor All Star high-tops, black (no red or white in stock). The cashier said the total was forty-something dollars. I told her that I was only getting one pair. She said that the total she just stated WAS for one pair. What happened?!? When I was in high school, I used to buy these because they were about the cheapest things going... no pump, no gel, no hypercolor, no padding, no arch support... nothing! I should have guessed from all the hideous shoe colors the salesman showed me that Converse must be high fashion now. A friend told me that I could probably go to the men's shoe department and buy the same shoes for way less money. I'll have to try that.

Picture, No pseudomonas, Vision damage?

Here's a picture of Denise that one of the nurses took last night. It's a scan of a Polaroid, so it's not very high quality. She's tired, but sitting up and smiling. Denise gave her permission to post this. The staff at USC has been talking about what amazing progress she's made in the last week & a half, and how different she is now than when they first got her. I thought that the Arcadia Methodist crew might be especially happy to see Denise smiling, not tethered to a ventilator, and getting ready to enjoy some refreshments.

Today she brushed her own hair, brushed her own teeth (using a regular toothbrush), and continued to enjoy lower temperature spikes (she was in the 99 range every time they took her temp today). A sample of her stats: HR 116, BP 116/69, 91% sats w/no oxygen. I found out that she does use the nasal oxygen when laying down, but doesn't need it when upright. The PT showed us some more exercises to do with Denise, and they let me stick around for the wound care. Her bed sore is continuing to heal up. Still pretty deep, but getting better. I brought her Converse sneakers that they got her at Arcadia Methodist to prevent ankle drop. Densie said they were too tight. I don't know how she'd remember that, since she hasn't worn them since being at the other hospital, which she said she doesn't remember. She was wanting to nap more than talk today, but she did tell me that she doesn't like having to look up at everyone from bed all the time. So if you visit, pull up a chair & try to get on the same eye level with her. She also doesn't like people getting in her face to talk (except me... hubba hubba). I once heard that we have a tendency when dealing will sick people to lean in too close and speak either too loud or too soft, often with a syrupy, "Mr. Rogers" voice. She said I do well at acting normal around her, which is good since she says she's already warm enough without people getting close to her face, and she's not a deaf preschooler.

I spoke with someone from the infectious disease department today. He did think that discontinuing the antibiotics (she's been off for about a week) helped lower the fever curve. I guess that we may have been chasing our tails with the antibiotics. The most recent sputum samples are not showing the presence of pseudomonas (yay!). A couple more negative test results like that, and she'll get a ticket out of the ICU and into a regular room! The ascites continue to build up, but not as fast. He thought that as the nutrition gets better, the ascites will go away. I asked about the mold in the meningeal fluid. Once again, I heard that yes, it's present, but the treatment is and has been appropriate. He also pointed out that they're treating the patient, not the lab results, and the patient is getting better fast. If she weren't, then they'd be more alarmed by the lab results.

I got a very helpful comment on what the criteria is for removing a trach:
1) Put in a fenestrated trach, no cuff. Check
2) Use the Passy Muir valve (speech valve). Used it, ditched it a couple days ago (Check).
3) Plug the trach, suction as needed. Check.
4) When no more suctioning is needed, yank the trach. That's what I'm waiting for.

Remember that you can now send email to Denise at pullingfordenise@yahoo.com. Though her vision is blurry right now, you don't need to use a larger font. I'll read everything to her. Oh, when I called tonight, she said that the opthomologist came to dilate her eyes again, and said that she had some damage caused by the valley fever. I know that this was a concern, but thought that the concern had diminished. She was tired and may have been confused. Still, it's a prayer point and I'll check into what the optho people said when I visit tomorrow.

Send Email to Denise at USC University Hospital

Now you can send email to Denise's hospital room: pullingfordenise@yahoo.com

I just set up an email account for Denise so that you can send email to her room at USC University Hospital. I'll check that account a few times every day and print out your emails on nice paper for her. I can't believe that I didn't think of doing this much sooner. When she was at Arcadia Methodist Hospital, the hospital provided the "Email a Patient" capability from their website. USC University Hospital, while being medically advanced, doesn't have that feature.

Anywho, you can click the "Email Denise at USC Hospital" link from the Pulling for Denise blog, or you can just add the above email address to your address book.

Oxygen hose and Poop Chute gone today!

More progress! She did a test run to see how she'd do without additional oxygen (sample: sats were upper 80s-low 90s, heart rate 115, BP 100/56). My understanding is that she hasn't been on oxygen since this morning. She doesn't have the poop chute anymore, either. Instead, she's just asking for a bedpan whenever she needs it. During my visit, I got to be the "Bedpan Avenger" and help place the thing. I've never done it before, and Denise thought I didn't need to get it as far under her as I did, but the nurse said I did it perfectly. Temps stayed in the 99 range and just went to 100 tonight. No cooling blanket needed, though she did ask for some ice and loves having that clip-on fan blowing on her. She finally watched some of the video of the trip we took to Disneyland two weeks ago. She's been suctioning herself. One of the suction gizmos has a foam swab at the end... sort of a toothbrush. She asked if she could have a real toothbrush, so they're going to see if they can get her one. Before I arrived, PT had her sitting on the edge of her bed for about half an hour. Her balance was so good that she didn't need to use her hands much of the time. Denise told me that a couple people were outside her room cheering for her. PT tried standing her up, but her ankle drop was so bad that her heels couldn't touch the floor. Tomorrow I'm going to bring her Converse high-top sneakers that they bought for her at Arcadia Methodist. The PT lady hadn't heard of that trick, but thought it would be great to get the bend back into her ankles so she can stand. PT was going to get her into the chair, but someone came to do an echocardiogram, and that put an end to the PT session. As of tonight, she was sound asleep shortly after 8pm, and I don't think they even had to give her any sleeping meds.

Only bad news is that she threw up a little. Again, she said that she was trying to cough gunk out of the back of her throat but it made her gag & puke. She still gets to eat ice chips & sip water slowly. It's hard for her to not want to guzzle it. Water is our favorite drink, and we chug lots of it every day. Maybe it could also be considered "bad news" that she didn't get moved out of the ICU today, as the doctor indicated might happen. But that getting into a "regular" room is even within sight has given Denise lots of hope. Us, too. I was going to ask what criteria she has to meet in order to get rid of the trach, but I didn't get the chance to ask. Any RTs out there, please post some general guidelines for when a trach can come out.

I was only with Denise a short time today (the kids woke up at 4:10 am, so I've been out of whack all day). I went home early to get a nap. After picking the kids up from day care, we painted the plaster handprints that they made a few weeks ago. Gracie wanted nothing but pink & purple. Jacob really didn't care what colors he used, or what he painted. I put some of my old t-shirts on the kids to protect their clothes, but I didn't think to give them face masks & shower caps, too. Jacob just about painted the whole side of his noggin blue. After that, one of Denise's friends came over to watch the kids and she helped Gracie write her thank you notes from her birthday party. I feel bad... I haven't even written thank you notes from *my* birthday yet. Speaking of the party, I'd been meaning to post a copy of the invitation that my cousin made. This is the same guy that's helping Denise's blog site by providing the ability to receive email updates, and customizing the guest map. A pretty handy guy to know, and if you like the creativity he put into Gracie's "1960s Mexican movie poster" birthday invitation (click here), maybe you can hire him to come up with something for your party, too. By the way, if I haven't already mentioned it, thank you very much to all the people that pitched in to execute Denise's plans for Gracie's birthday fiesta. It was incredible!

Long conversations, iPod church

Denise said that she was having a bad day today. She was tired of the pain of aching muscles, the bed sore, and the Flexi-Seal. She had a lidocaine patch for a while (hmm... if iocane powder came it patch form, would it be odorless, tasteless, dissolve instantly in water?). Then she got some heavier duty meds to take the edge off of the pain.
Everything else today was good (or at least improving). I got more video of her talking, smiling, waving, blowing kisses... the kids loved seeing her on the TV. She's got the encouragement of hearing that she may be moved out of ICU as early as Monday. Even if it's a carrot dangling in front of us, and doesn't happen tomorrow, it's a reasonable step to look forward to. Fever spiked at 101.4 last night (the spikes keep on lowering) and I didn't see the temp go above 99.9 during my visit today. Heart rate was usually around 108, but jumped to 117 during a bout of pain. The only time I thought to check the blood pressure, it was 106/61. She continued to eat ice chips and slowly sip water. There was a point where she threw up some water, but we think it was because of the buildup of gunk in her throat causing a gag reflex. Gunk. That's a medical term from now on. Remember that.
She was awake and talking to me for over 5 hours today. We made calls to one of her long-time college friends that has a disability. Denise told her that she was an inspiration to her, now that Denise is having so much physical trouble. Tears flowed. She also called her parents and my parents (they've been out of town & couldn't access this blog... my pop didn't know Denise could talk... by the way, his problem the other day was bronchial, not lung cancer-related, and he's doing better). Upon finding out that my sister-in-law was baptized today, she said, "Yay!" She wanted to know about what's been happening in her family while she was in the hospital. I told her that overall, we were preoccupied with her. She's especially interested in finding out what her mom, dad, and sisters have been up to, apart from worrying about her. She asked lots of questions about the hospital stay, too. She said she remembers hearing about losing the baby, remembers the kids visiting, remembers some faces, but otherwise can't really remember anything about being at the hospital until more recently. We listened to the church service, too. Our church, Lake Avenue, has their sermons & notes available online. That's been really handy when the kids have been sick and we couldn't make it to church... we'd just listen online. They recently started making the sermons available as podcasts, so they can be heard on an MP3 player. This morning I downloaded recent messages to the iPod and we listened to a Sunday morning message together. She thought that was really cool. Some of you didn't know what a blog was, or get online, or even use a computer until you started following Denise's story. Now I'm throwing terms like "iPod," "MP3," and "podcast" at you. I know how you feel. I've been hanging around medical pros and most of the time I can't understand their jargon, either.
She really wanted me to stay with her and keep on talking today. She looked tired, but said she wasn't. My lovely wife did come up with her requested visiting hours, by the way. Sleeping in would be great, so if everyone could please wait until after 9:30am or 10am to visit, that would be great. 8pm sounded like a good bedtime to her. I reminded her about the "no visitor" time between 7 & 8 pm in the ICU, and she pushed her last call for visitors to 9pm. The only time I left was for a very fast lunch in the cafeteria. Sushi (well, California rolls... not really sushi) & root beer. I don't know what I was thinking. I love both. Not together, though.
Anyway, like I said, Denise wanted me to stay, even during a cleanup. She was really sore and started sobbing, in spite of the nurses gentle washing & turning. As mentioned at the top of this post, she was tired of the Flexi-seal fecal collection tube. She just wanted that poop chute out. I explained that it needs to be in because if there's a mess, they don't want the bedsore to come into contact with it, due to the risk of infection. They deflated & reinflated the little balloon that keeps it in place, and she put up with it as well as can be expected. Now, she's also got a cooling blanket with a thermostat that's controlled by her temperature. And the temperature is taken, you guessed it, anally. The probe was out during the cleaning. The nurses are really good about letting Denise know what they're going to do. The nurse told Denise that she was going to put the probe back in. Denise's reply to the nurse is also the quote of the day: "No, thank you. I don't need anything more done to my butt today."

Carseat update: I couldn't find one to borrow, so I'm taking someone up on their generous offer to supply us with one. Thank you! It will get tons of use.

Teacher Karen update, from an email sent out by my school:
We want to let you know that our beloved Karen Shaw has gone home to be with the Lord. The Memorial Service will be held on Tuesday. We will communicate the time and place as soon as the details are finalized. Please pray for her family: her husband, Dan and sons Rob, Rick, Ryan, their wives and children.

Sipping liquid, NG tube gone, New trach, Talked to kids

Denise got to start drinking fluids! The nose tube to her stomach was removed. The output was low enough to not need it anymore. They do have a gravity-fed collection bag for excess stomach fluid. They changed her trach out to one that doesn't have a cuff, so her esophagus can collapse easier, making it easier to swallow. She also thinks it's easier to breathe. Just like last time, the doctor coached someone in how to change the trach out. They gave Denise a little cup of water with a straw, and she had NO trouble sipping & swallowing. The doctor joked, "Whiskey sours tonight! You'll have no trouble sleeping." He turned for a minute or two to explain things to me and talk with some interns. Then he turned back to Denise and asked her to take another sip of water. She held out the cup & said, "I finished it." The doctor said, "Well, she passed that test." They were *supposed* to do a swallowing evaluation this morning. That wasn't supposed to be it, but I guess it was just as good. We were informed that she can start up on a clear liquid diet. "Yay!" Denise said. Then she coughed & vomited up some of the water a few minutes later. Apparently she drank it too fast. As I was cleaning her up, she said, "Don't tell anyone." She knew that if the doctor found out that she puked, she wouldn't be allowed to eat yet. The nurse ratted her out, though, and so Denise was eating ice chips the rest of the time. Clear liquids are on deck, though. And the doctor said that in no time, she'll be eating steak & eggs. I should offer to take the doctor for a steak & eggs breakfast breakfast, but I'm not sure that he ever leaves the hospital. Actually, I probably ought to take a whole bunch of staff to breakfast, both from Arcadia Methodist and USC University Hospital. Maybe we can arrange for the day and night shifts to have their shift change take place at Roscoe's House of Chicken & Waffles one morning.

Physical therapy had her sitting at the edge of her bed for about 25 minutes... better than yesterday. She was sitting up in a chiar for two hours, and knew *exactly* when those two hours ended. She asked me to get the nurse because she was tired. Up to that time, we were really moving & stretching, particularly the legs. Heart rate was a little higher today (109-115), as was her blood pressure (120 systolic). Temps were hanging around 101. At hearing what her temperature was, she said that she thought she'd like to go swimming as soon as possible. Good thing there's a YMCA with a pool nearby. I think I'll get a family membership as soon as she's able to go so I can work out with her (I think they even have a service to watch the kids if you have a family membership). She pointed out that there's a special lift there for people that can't get in & out of the pool by themselves. Hopefully she won't need that.

She made a couple more phone calls today, too. I called out to our friends that the kids are staying with, and Denise was able to talk to Gracie and Jacob. I could see Denise light up when she heard their voices. Our friend said that the kids also were visibly excited to hear Denise. When Jake was on the phone, Denise kept saying, "Hi, I love you." Apparently he closed & turned off the phone *just* as he copied her, saying "I love you" back to her. I found that out later. I guess it was pretty clear, too. The kids want to visit Denise again (they haven't visited her for over a month), so let's hope that they can bend the rules a little for us.

Of concern is what I heard from the I.D. doctor today. There is mold growing in the sample taken from the menengial fluid. He's confident it'll turn out to be the cocci (valley fever), which likes to go for the head. But fortunately, she's already on the appropriate treatment for it (and she's obviously getting better, and fast). So I assume that the treatment's working. He also said that she's on voriconazole, which is both better and about ten times as expensive as the fluconazole (so maybe we'll wait on breakfast at Roscoe's). Seriously, though, pray/pull/tug that this is where the infection stops and that it finally goes away.

Side note before I forget: They won't let Denise have flowers or balloons in her room yet. Cards are fine, though. So are sculptures (last night, visitors brought flowers & a dancing woman sculpture that is the same style as some other sculptures we have).
Another side note before I forget: At lunch time, I ran into some people I know, and we eventually got around to talking about lunch. It came up that the hospital's cafeteria got a grade of "B" from the health department.
B.
At a hospital.
At *this* hospital.

The people I ran into are family of teacher Karen. Our brief joking about the cafeteria was a pause from the sad news that she's not going to make it. I went to sit with her husband in a waiting room and spoke with him (and tried not to speak, as well... I didn't want to be a "Job's friend"). He said he appreciated the prayers that were a result of this blog. Still pray, but rather than focusing on a miraculous healing for Karen, focus instead on an equally miraculous ability for her husband Dan (& family) to feel some peace, comfort, serenity... some relief from this surreal anguish. I remember feeling that when we lost our baby in July. Faced with the imminence of losing Denise a few weeks ago, I remember telling a neighbor, "I'm not ready to be a widower yet." I'm confident that Dan's thinking the same thing tonight. Things were very different for him 48 hours ago, but life's pretty raw for him tonight. Please save some thoughts & prayers for him.

Vent gone, Phone calls, Move out of ICU?

Today was a tremendously good day for Denise. The ventilator was taken out of her room. She told me that she felt disoriented, but I'm glad that at least she knows she's that. We called out from her room and she talked to her parents and both sisters for a few minutes. That was a morale booster for everybody. Then we talked about everything under the sun for about an hour. Gracie asked for a picture of Denise in the hospital, so I took some pictures of her. We've got video that I show the kids, but Gracie wanted a recent picture printed out to tack onto the wall. I told Denise that her web site has a pre-crisis photo of her, and asked if she'd want me to post the pictures I took today. She said that if I print them out big so she can see them (her eyes are a little blurry), she would look at them and decide.

Here's a portion of a note that the PT left with me: "We sat at the edge of the bed 22 minutes this morning, & Denise balanced almost the entire time by herself!!" They asked if we (the family) could start to work on stretching Denise so that PT can start working with her on standing & other activities. Standing!

Doctor said that tomorrow they may change the trach out again to one that doesn't have the balloon (cuff). That would make it easier for her to speak, but also harder to go back onto a ventilator. But he thought she wouldn't need it. I asked about the possibility of her being able to sip water, and he said that somewhere down the road, when the NG tube output drops, and after a swallowing evaluation, they can get her on a clear liquid diet. I just found out tonight that the swallowing evaluation will be tomorrow or Monday! Also, the doctor said that if Denise keeps chugging along at this pace, they'll move her out of ICU and into a "regular" room (and then she'll be able to get even more rest). That step from the hospital to a long term acute care facility for rehab may happen sooner than I'd expected. Denise's case manager talked about a place in the city of Glendora a while back. That would be great to just be a couple minutes away again. And since it's the opposite direction from L.A., the traffic would be a piece of cake.

There was an MRI today to check her head. The doctor told me that they're looking for optic nerve damage, and that the cocci can sometimes get to the retinas, leading to blindness. That's very rare, but they don't want to let anything slip by. And frankly, everything about Denise's struggle seems to fit the "very rare" catagory. The opthomology people were concerned last night, less so today. Denise also said that she thought her vision was not as blurry today.

She had plenty of visitors. A couple of the grounds crew that used to work at my school came by. Denise knew who they were and was very happy to see them, waving hello and goodbye. They had some annointing, some praying, some reading (Psalm 118). Denise loved it, raising her hand up and saying "Hallelujah, Lord!" when they were done (because she liked their visit, not because she was glad when they were finished). Then later in the day, she got a 3-hour visit from two of her old college buddies (one of whom is currently my sub in the computer lab). She was up for the visit. They were massaging & moving Denise. She must have liked that, because she said "I'm purring!" They told me that Denise was praying with them, talking about the days when they went to college (and associated shenanigans), talked about a dance ministry they did together, and more recent "life" issues. She said that she hates her bed and wants a softer one. The bed she's in is top-of-the-line and costs as much as a car. At Arcadia Methodist, they had an air mattress on top of the fancy bed mattress. Maybe they can procure one for her at USC. When our friends asked Denise what they could bring her next time, she said "Water" and then "Jamba Juice - strawberry banana smoothie." About 7pm she finally got tired and asked for the lights to go off, some earplugs, and said, "I'm starting to slur." Indeed she was all pooped out, so I decided to stay home & rest (the kids are having a sleeping over at a friend's house).

Stats today are as follows:
Heart rate ranged between 98 & 115, blood pressure around 100 systolic, temps 100ish most of the time that I saw her, but crept up to 101.5 when I called a while ago to check in. Now at this point I become one of the people that fall under "Ye of little faith." There have been a couple of times that fevers have been down, only to skyrocket again within a week or two, or things have been going so well, only to suddenly turn into a life-threatening crisis. Upon sharing this feeling with someone, it was pointed out to me that *this* time, Denise is off the vent, and much, much, much better than she was in previous periods of progress. That's a good thing to keep in mind.

A few final things not directly related to Denise's condition...

My dad had to go to emergency yesterday. My understanding is that my dad's cough got very bad and he needed some attention. For those of you that are new to this blog, my dad's fighting cancer. Indeed, I think we all figured he'd be the one in a hospital bed at this point, not Denise. My nephew was staying with my parents for a while, and they were driving him back up to reunite him with my brother again, so they're out of town while this is going on.

I can't tell you what a great support that Pasadena Christian School has been during this ordeal. I trying to decide if it's a better place to work or a better place to send a kid. Probably a tie. All kinds of support have been flowing in for me and my family... emotional, spiritual, practical, financial, physical, food (Philippe's French Dip for the whole family delivered on site at the hospital today, for example). Last school year, before Denise's ordeal began, I was sharing concerns about my dad's health. Offers of help for my parents rolled in. Help for Denise's parents came recently. I received an unsigned letter with $60 to replace the money stolen from Denise's mom's purse (by the way, it turned out that her social security was not stolen after all... they found it safe & sound at home). I stopped by work and mentioned that they needed to borrow a microwave for their apartment, and the request was filled pronto. Here's a great one: Just this afternoon a mass email was sent out to our parents that requested help in freeing the pulleys of our flag pole, which somehow got stuck at the top. Our principal said that our ladders & scaffolding couldn't reach, and asked if anyone had access to a cherry picker truck. One of our parents works for the fire department and sent us a hook & ladder to fix our flag pole. That happened during school time. I imagine that all the teachers probably gave up and let everyone watch the firetruck for a few minutes.

Earlier today you were asked to save some "pull" for my fellow teacher Karen Shaw (I just remembered that Denise was her classroom aide a few years ago). Word came in late tonight that the swelling around Karen's brain is massive, and things are looking very bad. Her husband has signed some serious paperwork. Denise & Karen are fighting very different health struggles. If there's even a glimmer of hope (or even if there isn't), things can take a big positive turn. I've seen it years ago with our daughter Gracie, and I've seen it during the past three months with Denise. You don't know how abysmal it is to be on the verge of losing your spouse unless you've been there. I don't wish that feeling on anybody. Please, please, please toss up a whole lot of prayer tonight for Karen, her husband, kids & grandkids (my students).

URGENT prayer needed for someone else...

Denise had a great day today, and I'll post her good news later tonight.

This blog post/email is an URGENT request for prayer for someone else that I know.
Please take a few minutes to lift up another guy's spouse that's pretty bad off right now.

Karen Shaw, a teacher at my school (I've known her for 12 years... I teach her grandkids) was in the hospital for a surgery, then had a stroke last night, and was being heavily sedated. I just found out a few minutes ago that there is swelling on her brain, and family members are being called in. I don't know anything else, other than the pain that her husband must be going through.
I tried contacting family, both at home and at the hospital (she's at USC with Denise) to get permission to post this request. I was unsuccessful, but went ahead with this request anyway, knowing that they'd need and appreciate the prayer.
Pour it on.

Day & a half off vent, Visiting hours, No Amphoterrible

Denise has been off the vent since early yesterday morning... well over a day & a half! When I visited earlier today, she was talking so much, it's gotten to the point that I can't remember all that she's said. I contrast this to about three months ago when Denise was sedated and I felt her squeeze my hand ever so slightly. She said she slept well last night (the doctor said he didn't). Her vision is blurry (might be due to blood pressure meds, doctor is having opthomology check her eyes tonight). She told me that she feels loopy, almost like she's in a dream, and said that she'd like to stay off the drugs because she's had weird hallucinations. I'm glad that she recognized these things (tonight's nurse said that Denise was a little concerned about being harmed, but calmed down with a little gentle conversation & reassurance). Today she was asking about the kids, we talked again about our scheduling & whether I was visiting her enough. Being that she's all about being mommy, she liked that I was spending as much time as possible with the kids. She also echoed advice to not wear myself out, since that would be bad for both her and the kids. Considerate as she is, she was apologizing to the nurse for having to be cleaned up so much. Usually I've had to leave during a cleaning, but Denise asked the nurse if I could stay this time. I assumed that it might be out of paranoia that she'd be harmed, but Denise later said that if I left, she'd have to wait longer to be cleaned up. Since I stayed, I got to help and she got cleaned up faster. She thanked me for all I've done for her during this ordeal. There were so many other things she said... as I stated before, I can't remember all the things we talked about. It was glorious!

VISITING HOURS: Effectively 8am-7pm
Call ahead 323-442-8893, Room 714
The doctor is trying to confine Denise's activity to the daytime so that her day/night cycle will kick in.
This morning I saw new sign on Denise's window:
8am to 8pm: Lights on, curtains open, call O.T. & P.T. (occupaitonal & physical therapy) on demand in between procedures.
9pm-7am: Lights out, curtains closed, sleep (ZZZZZZZ), no visitors.
Please note that between 7-8am and 7-8pm, no visitors are allowed due to the shift change.
Also, a nurse said that visiting between 8pm and 9pm may be iffy, since there will probably be a mad rush to get things done before they give her the meds to go off to sleep.

The stats for the scrub jockies that are following Denise's progress:
Heart rate 101-108, blood pressure 91-108 systolic, temps 100.2-100.6, hemoglobin 11 (was 8 yesterday before the units of blood), white count 8, hematocrit 33, creatinine .4, I believe I heard that the nasal oxygen hose is set to under 2 liters.

Other accomplishments & developments today:
-She signed her name into some birthday cards.
-With some help, she sat at the edge of her bed for 8 minutes. At first, she felt light-headed. I thought overheard the doctor say that before they sit her up next time, they'd try to give her a bolus of albumin. I could well be wrong on what I heard, because I remember albumin being an indicator of kidney problems.
-I asked about the status of the Amphotericin and found out it was discontinued a couple days ago. No wonder she wasn't feeling the shivers, shakes, aches, etc. The doctor said that the thought came up that maybe her problems are that she's been on so many antibiotics. So they stopped them, excepting the voriconazole for the valley fever. By the way, Denise's parents just told me of another person they know that died of valley fever at the age of 41, after battling it for about two weeks. That's the third person we've heard of that's died from this since Denise came down with it.
-And now, you finally get to find out why there's a picture of a toilet at the top of tonight's post. Denise got to see the fancy toilet in her room for the first time. It's built in under the sink. When you open the cabinet door, this stainless steel beauty swings out with it. If they start carrying these things at Home Depot, maybe I'll install one in the kitchen. Of course you want to see a picture, so there it is.

Heart rate 101, Fever 99, Off vent all day

It's been another good day for Denise. Her heart rate during the day was around 117, and fevers were in the 100-101 range most of the time, blood pressure normal. When I arrived, the chaplain said he'd already visited and prayed with her that morning. He said that she was paranoid about the doctors & nurses again. About an hour or two into my visit with Denise, I asked her if she had any nightmares or scary thoughts, and she said, "No, why?" I'm glad that she can't remember being frightened. There's some speculation from a couple of friends that perhaps the Ambien that's been used to get her to sleep might be causing the hallucinations (rare but known side effect of Ambien). She didn't have these problems when Ativan was used to keep her knocked out, and it seems to me that they only started when I first heard that Ambien was used. She did say that she had a rough night last night, but because of needing to be cleaned up three different times. She again said that she felt like she was making everyone's job harder because of the messes. I told her that she's making jobs easier, because she's getting better each day. One of the nurses even said that she liked peeking in on Denise because she likes to see that people she's taken care of can and do get better. So Denise is her encouragement. I liked that, so I passed it on to Denise. She asked, "Will I need diapers for life?" I told her that I think Jacob will be in diapers longer than she will.

She's been off the vent since late last night or early this morning, depending on how you look at it. Her nurse told me that Denise told her that she thought her voice sounded closer to normal. Also, it's easier for her to breathe and speak. That little plug in the tracheostomy seems to do nicely for her, even better than the speech valve that she'd had before. All today, and as of tonight, she was still able to get 100 saturation, with an oxygen concentration of 30%. She didn't have that pesky mask today, other than when she was getting her breathing treatment (Levalbuterol & Atrovent... sorry, I can't remember how each is supposed to work). She just had the oxygen flowing through nose prongs (or nasal canulas, depending on who I talk to). During thebreathing treatment, I whipped out a clip-on fan that someone from my school is letting us borrow (THANK YOU!). It looks like yellow duck (the feet are the clamps, and there are eyes & a bill on the blade guard). She loved finally having a breeze on her, because she thinks the rooms are too stuffy. Denise asked why it was easier for her to breathe & talk, and wanted to see the plug in her tracheostomy. So I handed her a little toy unbreakable mirror so she could see everything. I reassured her that everything would come out when she gets better. She talked mostly about the kids. She wanted to make sure that I was recording the antics of the kids on paper (OK, on blog), pictures, and video. She smiled at hearing about splashing in the puddles, and Jacob squishing the worms. She asked, "Did you clean his shoes?" As has been the case for the past couple days, she was more animated in voice than in facial expression. By about 12 noon, she was napping.

That Amphotericin doesn't seem to be so terrible after all. She said that she wasn't feeling any more shakes, aches, or yuckiness than usual. It's not living up to the hype. Almost makes me wonder if it's been discontinued. There are so many changes, it's hard to keep track, or understand them. Not that I understand much of this stuff. It's incredible. Pray for the doctors & nurses. God's using their incredible skills to help get Denise better.

As of tonight, she was sleeping... worn out after a full day of breathing on her own. She had a heart rate of 101 (her Coreg dose was doubled). Blood pressure lowered to 88 systolic. Not quite normal, but acceptable. I bet that getting two units of blood today helped give her enough volume to tolerate the higher Coreg (and accompanying lower BP). Her hemo count has been holding at about 8 for a while. The extra hemoglobin should help her get more bang for the beat out of her heart. Her temps were in the upper 99 range. I'm cautious about getting too excited, because those fevers have come back in the past. Pray a bunch that these infections are gone, and that the fevers will also be gone! Speaking of fevers, I forgot to say that yesterday the nurse told me that they had to give Denise an ice bath the previous night. I think I'd hate that. So I was trying to be empathetic with Denise, and told her how I can only begin to imagine how horrible those must feel. "Oh, no," she said, "I like 'em. They feel good."

Evenflo Triumph car seat to borrow? Map problems

Does anybody have an Evenflo Triumph car seat that we can borrow for a few months? I was going to buy one, but thought I'd put the feelers out first. This is about the only model that we can use, due to the available space in our vehicles, the angles of the seats in our vehicles, and having only lap belts on the bench seats in our 1990 Aerostar minivan (also making it impossible for Gracie to use a booster seat). I even checked out aftermarket should belts from JC Whitney, but they won't work where I need to put them.
The dream vehicle is a Sienna. For now, the dream seat is a Triumph.

Guest Map Problems: The zoomable guest map is currently having some trouble. This is not something that Webmaster Mike is responsible for; it's somebody else's fault (really!). Maybe the people that host the map are doing server upkeep or something. Anyway, check back later.

Bedside Fan: I think we found what we're looking for online, so we ordered a couple. Also, someone from my school had a couple that I can borrow until the ones we ordered arrived. Thank you, everyone!

Speaking, EF up to 30ish, Coreg to restart

Denise didn't make it to 24 hours off the vent. They had to put her back on early this morning. But she's still been off the vent more than on in any given 24-hour period, and her times have been improving. That's nothing to be ashamed of.

I walked into Denise's room today around 10am and her face was away from me, her bed in a sitting position. I thought she was sleeping, so I very quietly put my backpack down on a chair. I heard a buzzy, nasal, yet enthusiastic "Hi... Hi, Honey!"
I was startled... almost peed myself. Denise had a little plug in her tracheostomy (not a speech valve) and was able to talk, and with quite a bit of inflection, too! She didn't sound dazed at all. She asked, "Who's watching the kids?" I told her they were at day care with our neighbor, and asked if that was OK. It was. We talked about the schedule I currently have in place, as far as it relates to the time I'm able to visit with her, and when the kids are dropped off and picked up. She said "That sounds good." I asked if she wanted me to visit her again at night after putting the kids to bed, or if I should stay home. She said, "It depends who's with the kids." I went through the list of people that were watching the kids, and reassured her that even if I'm not with the kids, somebody trustworthy is. I asked if she was lonely when nobody's there, and she said, "No, not usually." When asked if she had any bad dreams, she nodded. I asked if they seemed like they really happened, or if they seemed like dreams. She said, "Dreams." Good... no paranoia today. We said the Lord's prayer together, one phrase at a time... like the kids in the wheelchair on the TV show "Malcomb In The Middle." That took some effort, and by the end, her voice lacked some of the inflections it had a few minutes ago. I told her that her folks found an apartment near the hospital, that they left last night to go home, get some things, and would be back. She seemed dazed/distracted by the TV... images of cars in mud. More hurricane Katrina footage, and that stresses her out, so I turned off the TV. More on this in a minute. I told her that her mom's coworkers chipped in a bunch of days off so that she probably didn't have to work for a while. She replied, "That's awesome!" in an upbeat voice. "Your nurse seems really cheerful & nice... do you like her?" I asked. "Oh, yeah," she responded, still with some umph in her voice. Then almost immediately, she started to take the cooling blanket off of herself (still running fevers, though not as bad as yesterday). I asked if she was trying to get up. "Yeah, I have to go to the bathroom" was her reply. I told her about the gizmos in place that bring all the convenience of the bathroom to her bed.

The respiratory therapist came in and gave her a breathing treatment. She didn't like the mask being strapped so tightly to her nose. During that time, I started tacking some of her cards back up on the walls. The cardiologist came in with good news for us. He said that he'd consulted with *the* top cardiac guy... I forgot the spelling, but it's something like Elkiam (eek!!! I finally dropped a name in this blog!). Those of you cardiac maniacs out there that buy packs of cardiologist trading cards can post the correct name for me... he sounded pretty famous. Anyway, the cardiologists all thought that Denise's heart could come back to normal over time. The consensus on her ejection fraction is that it's between 30 and 35 (that's a big improvement over the 10 that we heard about 3 weeks ago). He said that they're going to use a "beta-blocker" drug on her. He was very nice about taking the time to explain things to me in plain english. I asked him what the name of the beta-blocking wonder drug is, pen and paper at the ready. Coreg. *sigh* Been there, done that. Hope it works well under the current conditions. Still, I told Denise the encouraging bits of news. And really, I think that when she was on Coreg earlier, it did do what it was supposed to do... just not as much as I'd hoped. After telling her that her E.F. went from 10 to 30-35 in about three weeks, she asked what normal was (60). She did the math in her head fairly quickly and asked, "Home in three more weeks?" I didn't have the heart to tell her that they're hoping to get her home for Christmas. I chose to give a rather ambiguous (and accurate), "I don't know... I hope so. Wouldn't that be great to finally get out of here?" She nodded, then said that she was getting tired and wanted to recline. The nurse said that in a few minutes she would clean Denise up, and that would be the perfect time to recline her and let her rest. Before that happened, the doctor walked in to check on Denise (her mental status in particular, I believe). He asked her to repeat a few things. He asked, "Do you know where you are?"
"UCLA," she said. Close enough. At least she knew that she was at a new hospital, and it had a better football team than Arcadia Methodist.
"Ooh... wrong answer," I said, hoping the doctor wasn't a huge football fan or anything. "USC, Honey."
"Oh, yeah." About that time, the nurse came in to clean her up. It was the lunch hour, and Denise was tired. I told her that I'd grab a bite, come back, and if she was sleeping, just go home. And that's how things turned out. Last I heard, there wasn't much change in temp (101 range), heart rate (120s-130s), or oxygenation (98-100), and her blood pressure was still good.

On the way home from the hospital, I called Denise's parents to fill them in. They left last night. They were still on their way home this afternoon. Turns out that the TV pictures I saw were most likely a mud slide that shut down the freeway that they needed to take, and they had to spend the night at a hotel in Newhall last night.

Attempting 24 hours off vent, High fevers, Shopping challenge

Big positive news today is that Denise is going for 24 hours off the vent! She was taken off at about 1am this morning. Put back on about 11:30 or 12 noon. Then they were going to take her off at about 4pm and see if she can go until 4pm tomorrow. She was encouraged to hear that she's going doing well enough that she's going to attempt a full day off of the vent.

Negative news today is that her fevers went to 105.1. I didn't see that... the range I'd seen today was between 101.4 and 103.7 (just tonight... she was sound asleep, off the vent, heart rate bouncing between high 120s and 145, O2 saturation between 91 & 98).

Earlier tonight, she got another paracentesis that drew off a little over 2 liters of fluid. I need to check, but I think the trend is longer time between draws, and relatively less fluid given the number of days that the fluid has been building up. Anyway, that fluid will be sent for cultures. They're also keeping eyes on results from the spinal tap (and everything else), trying to see where that infection might be hiding. Several infectious disease doctors will be consulted. Also, a cardiologist has been brought into the picture to try to figure out why Denise's heart has been racing for so long. Pretty smart bunch of guys already. Pray for even more wisdom & insight for them, as well as the doctor in charge of Denise.

When I was visiting during the daytime, Denise got a new tracheostomy assembly inserted, and she did great during the procedure. Thank you to the staff & doctor for letting me come in, stand out of the way, shut up, and watch. It was interesting to see the gizmo that's been in her throat for so long. When it was changed out, the doctor covered the hole with his finger and asked Denise to repeat a few things, which she did very well. With the hole covered, she had to breathe through her mouth, which was a little weird for her after sucking air through the trach for long. She was alert (though not really very expressive or animated). She was responding appropriately to questions. The USC chaplain came by & prayed with us (he's been in to visit Denise frequently... we've just been missing each other). Prior to his visit, Denise was really trying to tell me something that I couldn't figure out. During his visit, the nurse came in and said that she would help Denise talk. So she pulled out part of the trach assembly (I'm guessing the inner canula?) and covered the hole with her finger. Denise was telling us about some pretty ugly stuff that she thought was happening to her, and so once again I found myself explaining that the doctors & nurses have her best interest in mind. I explained that the meds, fever, unpleasant procedures, and lack of rest might be causing some temporary confusion and very vivid nightmares for her. I told her about a couple of people we know that said they also had weird dreams while in the hospital for extended amounts of time. After a while, she seemed to believe what I had to say. Then she tapped the nurse on the arm to get her attention & said, "I just want to reiterate that I don't want you to do anything bad to me." The nurse graciously agreed. I thought it was kind of cute that, even when half out of her mind, she still used the word "reiterate." Most people don't use that word, even when they have all their marbles. She indicated that she wasn't feeling that bad from the Amphotericin (yay!), and wanted me to stay a while. But by about 2:30, she said she was tired and was ready for me to go away. So I did.

When I got home, it was raining pretty hard, but was a nice 71 degrees outside. I picked up the kids from day care and walked home. Gracie was jumping over the worms on the concrete; Jacob was stomping on every one he could find. The kids, the dog & I splashed in puddles in the back yard while it was still raining. Gracie said it was "like the state we flew to" (Tennessee: raining, but not cold). Puddles are easy to find in our back yard. With Denise gone, and our lives being turned on end for a few months, the dog isn't getting any attention, and has dug the heck out our lawn. Right after it rains, our yard looks sort of like an aerial view of Wisconsin.

There was a great thing that happened the other day that recently came to my attention. Last week the prayer moms from my school were visiting Denise. By the end of the visit, she was exhausted (due to procedures during the visit, not due to the visit itself). She had the speech valve in and was so encouraged by their visit that she told them, "I will get up and walk." And the sooner, the better.

Apartment found! Denise's folks found a place near the hospital that seems to suit their needs. Thanks for the posts & email offering ideas. Looks like that's one more thing we can check off the "to do" list. They were also blessed with a loaner car that gets great fuel economy, and gives a smooth ride.

Shopping challenge: Denise is allowed to have a battery-operated fan in her room to circulate the air. I went to Brookstone to look for a specific fan I'd seen a while ago. They don't carry them anymore. So help us out here, people. We need a fan that runs on batteries, can clip onto a hospital bed rail, and preferably has a gooseneck and blade guard. If you see one somewhere, let us know so we can go get it.

16 hours off vent, Reaction to meds?

That's right, 16 hours off the vent. She came off the vent at 3am and went back on about 7pm. That's three hours more than yesterday! I put the speaking valve on a couple times during the visits. This morning she was sitting in a chair, looking out the window. I put the valve on, she started coughing, then I took the valve off and a bunch of mucous came up. Same thing happened a time or two later tonight, as well. Seems to be a pattern... suction, valve, cough, mucous. Anyway, the general guideline for the speaking valve currently is that she can have it in for 5 minutes, then 15 minutes of rest. In the morning, she didn't want to watch TV (no suprise) and didn't want to hear any music (that's out of character for her). She said that if the medicine is supposed to make her feel flu-like lousy, she didn't want anyone (including me) to visit her; she just wanted to be left alone to rest (fat chance, with all the procedures being done around the clock). She indicated that she feels like she has to work harder to breathe when the valve's on. That makes sense, as her lungs & chest muscles are weak. What's weird to me is that a couple of days ago we went for an hour & a half in the morning and about the same in the evening, with the speaking valve on, no problem. Tonight she said, "I love you so much" and when talking to my aunt, she said, "I need a spray bottle by the bed" and "I get hot and want to cool off." Denise's mom is going to pick out a nice battery-operated clip-on fan for the bed so the air can circulate. Not exactly a spray bottle, but it should be some help.

In the good news department, Denise has had 15 blood cultures in a row that aren't growing anything. That's not to say that there's no pocket of infection somewhere. But the nice thing is that there doesn't appear to be anything that's gone systemic and shows up in the blood. AND the Amphotericin goal has been cut in half. Instead of going for a full gram, they're going to go for half a gram. My understanding is that they're still going to give her 60mg per day, so that should cut in half the number of days that she'll be miserable from the stuff being administered. AND (yes, more good news) tonight when asked if she felt the shakes, shivers, aches, etc., that are the side-effects of the Ampho, she said it wasn't too bad, but she was very tired. I don't know if the Ampho has a cumulative effect or not, but it sure would be nice if (a) they can pump the stuff into her without it making her feel too yucky and (b) it kicks the keister of the infection.

On the bad news end, there's still the fever, up over 103 at about 7 pm. Might be due to the Ampho, but I don't know how much more the Ampho will increase a fever that she's already running. Not exactly bad, but annoying is the word I'd use for the waiting that we have to do. Denise's parents, my aunt & I were waiting hours & hours in order to see Denise for minutes, it seems. Her dad pointed out that when the hospital says, "Check back in fifteen minutes," those 15 minutes tend to be closer to 45 minutes or an hour. I attribute this phenomenon to the hospital's being partnered with the county. The county being a government entity, it's only natural for things to take way longer than anticipated.

Here's an interesting thought: Given that there are 15 negative blood cultures in a row, they think that maybe she's having a reaction to one of the meds. The Ampho apparently will cause a spike in temp while being administered, and a little while after. But she's usually spiking fevers in the evening, well after the Ampho has stopped. Some of the meds were stopped yesterday. I don't know what else will be stopped or changed around. Should be interesting to see what happens.

The other day (Wednesday, I believe) the doctor said that he hopes to get Denise home by Christmas. She's well-worth the wait. In the mean time, she hopes to get her toenails painted. Both Denise's mom & my aunt were going to try to do the deed. Rather than fight it out, Denise smiled at the idea of each one doing a foot. Due to the waiting today, Denise's toenails are still undecorated. But she's got something to look forward to, at least. And even more than getting her toenails done in the hospital, or going back to her regular hair guy, or wearing "regular" clothes again, she most looks forward to getting a massage when she's done with this ordeal (I'll happily spring for that luxury, and I think I might need one, too).

Theft, Oxygen episode, Paranoia, New Room, Party

Been a very busy & exhausting two days. There are some disturbing things that Denise has said, but her overall physical progress seems to have improved. Let me start at the beginning...
Yesterday (Friday) morning I arrived at the hospital and heard Denise's dad's voice around the corner, saying "I think it's heart failure." My heart sank. I found him talking on the phone. He hung up and related the following to me:
Thursday, sometime between 4:30-6:30pm, Denise's mom's purse was taken from where it was setting just outside Denise's room, then found a few feet away with all money gone and social security card gone. They don't need this, as they're already trying to stay near the hospital during the week, and money's tight.
Then he told me about a conversation he had with Denise earlier Friday morning. She said very adamantly (off the vent, with the speech valve on) "They're trying to kill me" and some other disturbing things, which resulted in only female nurses being assigned to care for Denise as a precautionary measure. Her heart rate was around 140, then the wound dresser came, Denise got red-faced, and her heart rate soared to the 150s. She started to "space out," her heart rate dropped to 44 for a moment, eyes rolled back, oxygen saturation dropped to 72%, and she started gasping. The speech valve was promptly removed and Denise was put back on the ventilator. Very quickly, her heart rate recovered and oxygen saturation returned to the high 90s. The doctor suspected a problem with the speech valve, and the respiratory therapist suspected not. I asked Denise's dad if perhaps Denise was coughing and perhaps got mucous stuck in the valve which may have blocked the valve's ability to take in air. He thought not, and said that he even rinsed the valve out and put it on by himself, and there was no mucous (he watched the respiratory therapist do it and he said he did it the same way). By the way, think of a kazoo... the speech valve looks sort of like that little round part with the membrane in it... we're supposed to rinse the valve in such a way as to not let water directly hit the membrane... that's why I even mentioned rinsing in the first place. And for those that have been asking, it's a Passy-Muir 2001. Later in the day I asked if the valve was bad, and one person said that it was sent for evaluation because it was suspected that it was bad. Then later in the day another person said that the same valve was in the room, right by the sink. So when it's all said & done, I don't know. But Denise was OK in the breathing department yesterday, being off the vent more than on during waking and non-waking hours. And today, she was off for 13 hours straight, and they've had the speaking valve in a few minutes (5-15) at a time every hour or so.
Back to what happened... I asked the doctor about Denise's "crash." He said that he wouldn't call it a crash. He said that it wasn't a heart problem at all... it was an oxygenation problem, and he sees it at least once a day. If it were a heart problem, she wouldn't have gotten better that fast. *whew* Heart's still not great, but he still felt that once the infection's found and whipped, the heart will fix itself over time. *whew* again.

Because of what Denise was saying to her dad in the morning, we talked about sleep deprivation causing paranoia, or nightmares, or the Amphotericin causing bad hallucinations, and all sorts of possibilities. Her dad thought it might be good to spend the night with Denise, just to be support. So last night I went to the hospital to spend the night. At 8pm they gave her some Ambien to help her sleep, then proceeded to move her from room 704 to room 714. Needless to say, the commotion kept her awake. During the time I was with her, she was saying some really off-the-wall, disturbing things (paranoid about the doctors & nursing staff, worried for her mom, among other things). She was really frightened. I'd pray with her and she'd fall asleep (either I have a calming presence or I'm one boring prayer warrior), or at least close her eyes & be calm. Then she'd jerk awake/alert and start to talk about more weird & horrible things . She did this with the cuff inflated... we suspected aleak but they said it might be a positioning issue. Finally she seemed to be sleeping for a fairly long stretch and the nurse came in to say that she got permission to administer Ativan, but didn't really want to, now that Denise finally seemed to be zonked out. I think she saw Denise's pattern of "sleeping" & jerking awake, so the nurse did decide to give the Ativan, which kept Denise asleep for several more hours. So I went home around 2am this morning. When it's all said & done, me being there last night didn't seem to make much difference, but the Ativan did.

Today I was so tired that I had someone else drive me to the hospital each time I went. In the morning, Denise was very upbeat. She was sitting up in her bed, I got to hear her speak a little with the valve, and her responses during conversation were appropriate. So it seemed that the sleep did some good. My aunt was taking off Denise's old toenail polish and rubbing her feet, and Denise was definitely enjoying that. She even stuck her tongue out after the nurse swabbed her mouth with the minty sponge (Denise would love to just be able to drink plain old water). At one point, Denise said that she had to go to the bathroom. I asked if she was embarassed and wanted us to leave. She said, "Please leave." So we did. When we came back, she was cleaned up, but tired. They were also starting to pre-medicate her for the Amphotericin that was to come, so we went home and let her rest. More on the medication schedule, the side-effects, and how that relates to visiting hours will be addressed below.

Gracie had her birthday party today. Many thanks to everyone that helped out with the planning, food, cake, decorations, shopping, tables, chairs, and every other aspect. I can't say enough about how great a party this was today. I didn't lift a finger for this bash. Gracie loved her fiesta, and Jacob seemed to like it, too. The food was definitely his favorite. We had Mexican food made by gringos, and believe it or not, it was really good. I'm confident that people will understand if I'm a little slow in helping Gracie get her thank you notes out. Hmmm... I still haven't written thank you notes for my birthday in September. In fact, I think I have a bazillion thank you notes to write for all the support my family's received during the last three months. Really, I'm not an ungrateful jerk... I'm just pretty busy. Tonight after the birthday party, a friend told me that the people in her Bible study were talking about what an inspiration this blog is, and what an inspiration I am. Thanks, but I'm just another guy that wants his wife home from the hospital.

After the party, I went back to the hospital again. Denise had her eyes closed, forearms up when we arrived (about 8:20pm). The nurse told us that she was just going to give Denise her sleeping meds (Ativan) but would wait until our visit was done. We made it a very short one... maybe 20 or 30 minutes. My aunt came in for about 5 minutes, then spent the rest of the time getting info from the nurse. I prayed with her (that's been a given for 3 months, by the way... just assume that for every visit). I told Denise about the party, that I'd show her the video of it and the Disneyland trip tomorrow, she asked what Gracie got for the birthday, and a few other things. She squeezed very few words around the tracheostomy cuff and was fairly mellow. It was apparent that she was trying to stay awake while I was there, so I told her I was going to go. Then she told me that she's wearing purple underwear. I asked her if she wanted that, and she said, "No." I asked if they're making her wear purple underwear, and she said "Yes." I told her that when she's done, she can go shopping for whatever color underwear she wants, but in the mean time, I was going to leave, go outside, and tell the nurse not to make her wear a color of underwear that she doesn't like. Denise nodded and smiled. Easy night, and that was the extent of the paranoia. I asked if she wanted me to come again in the morning and she shook her head "No." I asked if she wanted me to let her sleep in and come later, and she nodded. As I was taking off my mask, gloves, & gown, she already had her eyes closed again, forearms raised up, like they had been most of the visit. Hopefully, she'll be able to rest again tonight, and we won't have to deal with her nightmares, hallucinations, or whatever else it was that she's been experiencing.

About the meds & visiting:
Over the next two weeks or so, the plan is to start giving Denise the Amphotericin at about 12 noon, dripping in over about 4 hours. I've stated before that in the past, she's had Ampho B, which is gentler. This time, she's on a regimen of straight-up Amphotericin, which is temporarily brutal. She'll have chills, fevers, aches, and generally be miserable & irritable during & after. Before the Ampho, they're going to pre-medicate her with Benedryl, which will hopefully mellow her a little and lessen the nasty side-effects of the Ampho. They're trying to get her on a normal day/night sleep cycle, which tends to help healing. So she'll be getting some Ativan sometime after 8pm each night, which will knock her out. Add in the shift changes, and she'll probably only be up for visitors only during the morning hours, say between 9-ish (she likes to sleep in) and noon-ish. The rest of the time, she'll probably not want to have visitors (she feels obligated to play hostess), or she'll need to sleep (please do not disturb... she wakes up to squeeking sneakers in the room).

As far as other meds, they've discontinued the Zyvox, Amikacin, and Primaxin. She's on Zosyn (pipperacillin & tazobactam), Ampho, and Vfend. She's also on colymycin, which is an aerosol in the vent nebulizer that's supposed to nail the pseudomonal infection. The Digoxin was increased to 0.25mg/day. She's on an alternative/complementary therapy substance called Glutamine, which is claimed to assist the immune system & protect the bowel, among other things.

Sorry for the long post. That's what two days will do to us. The concerns are still finding the infection, dealing with the Ampho side-effects, and maybe still the paranoia. But at the end of the day, she seems to be better today than she was two weeks ago. So for that, I'm thankful.

Amphoterrible started, Past MRSA mentioned

Denise was off the vent a long time and talking again today, but was a little more tired than yesterday. I can't blame her, with all the strides she's been making. I felt important... I got to pop the speaking valve on & off, inflate & deflate the tracheostomy cuff (though when I left, I think it might have had a leak... I hope I didn't break it). I also got to help hoist her from the chair into the bed. During suctioning of the mouth, she said, "I don't need your help... I'll do it." She held the sucky thingie and vacuumed her own mouth out. While my nurse aunt & I went for lunch, the prayer moms from my school showed up to have mid-week church at Denise's bed side. She's been looking forward to that for several days. Denise was pretty tuckered out by the time they were leaving. She said that their visit was wonderful and she felt special. Then she started dozing. She was put back on the vent at 4pm, with the intent to keep her on until midnight. At that time, they'll take her off the vent and see how she does. The doctor wanted to be sure to be there when she got tired.

Doctor today said that he heard Denise chatting up a storm, and he though, "Gee, there is a person in there." Hearing her speak seemed to allay his concerns about her mental state. Good. The straight-up Amphotericin (not Ampho B) is going to start. They're going to try to get a gram of the stuff into her, going at 60mg per day. That'll take over two weeks, and she'll be feeling pretty lousy the whole time, as this version of Ampho has harsh side-effects. He thought her two biggest issues now are the heart & the fungemia. No fungus is culturing out right now. But he said that a small percentage of autopsies showed that patients died with a fungal infection that never showed up in cultures. So he's not taking chances with Denise. The lungs seem OK, no pneumonia. He also made mention that she had MRSA (Methicillin-resistant Staphylococcus Aureus) in the sputum on admission, but it's not there anymore, according to the I.D. doctor. This is the first that I recall hearing about that. Scary, but I'm glad it's apparently over. The I.D. doctor said she's on Primaxin & Amikacin to cover the bacterial infections, and on Vfend & Ampho for the fungal infections.

Heart rate was still high (130s-140s), REALLY high tonight (150), and the nurse was on the phone to the doctor. Blood pressure was great all day. Fevers were below 101 the whole time I was with her, but was up to 103 tonight... possibly partly due to the Amphoterrible.

I forgot to mention in yesterday's post that the school parent that works as a surgeon at USC popped by to check Denise while I was was there (he does rounds every day; we just miss each other quite a lot). He's a really upbeat guy, and it greatly encouraged Denise to hear from him all the progress that she'd made. He wears a white coat, which in Denise's mind gives him more credibilitythan me in my cheerleading costume, saying "Atta girl!"). Between that and the ability to speak, she had a much better day yesterday than the previous two days, in which she felt that she'd never get better.

Long conversation, Mental state concerns, Poop

We had the longest conversation we've had in 3 months! She made a huge leap from yesterday's singing "Happy Birthday" and getting winded after a few sentences over the phone. Today we both sat in chairs and talked for at least an hour & a half this morning & about the same at night. She said she loved me, wanted me to tell the kids she loves them. We said the Lord's Prayer this morning, and she took a turn praying before we left tonight (my aunt the nurse that Denise was asking for was with us). She asked lots of questions about losing the baby. We talked about Disneyland, the upcoming birthday party, and what to get Gracie for her birthday. She said that if we're not moving to Tennessee right away, maybe we should get a swing set. We talked about everything... family, work, food (she wants to actually eat & drink something), exercise (wants to go the rehab room in the hospital & ride a bike right away), her illness, her haircut, this blog... everything. So next time you visit, you might be lucky enought to actually get to talk to her (tonight was the first time her parents heard her speak since this mess began).
She had her speaking valve in for a long time today... her heart rate was still fast (120s-130s), but not so fast that they thought the valve should be removed. I also learned how to pop the valve on & off and how to inflate & deflate the cuff. I feel important now. She was sitting in a chair a few times as well, though her bottom was getting really sore. The goal was to get a 12-hours stretch off the vent. I'm not sure if that was achieved or not, but I never saw her on the vent today.

Temperature went to 103. Yuck.
The doctor caught me & Denise's dad this morning. Highlights of what he said were that he was concerned about Denise's state of awareness. I've noticed that she has been staring off more lately, but during our conversations today she was responding promptly and appropriately. She's not as animated as she's been at other times, but she did crack a few jokes & smiles. My hope is that once the fever & meds diminish, and once she gets rested & stronger, the mental concerns will be history. I'm encouraged by how much she talked about during our visits, though. He said that previously, a milder version of a med has been used against the cocci. He thinks that there must still be some cocci somewhere that they haven't found, and they're going to try to hit it with the nasty version of the med that has harsher side effects (he only mentioned the shakes). I assume, but could be wrong, that he referred to Ampho B, and they'll just go for straight-up Amphotericin. He also said that kidneys are doing good, liver stats are on their way to normal and liver should regenerate. The last ejection fraction showed about 20 (compared to 10 previously). While her heart took a beating, it's reasonable to expect that her heart can recover over time. That was great to hear.

I'm tired as can be. Before I go to sleep, here's a story to illustrate just how tired I am. I was changing Jacob. He had a poop, a dry-ish lumpy one. Usually I set the yucky diaper atop our changing table, and put it into the diaper trash bin after he's been changed and set safely back down on the floor. For some reason, I left the dirty diaper on the pad this time, folder over itself with the little prize inside. I had a hand on Jake so he wouldn't fall off the table, and my other hand was reaching for a baby wipe. He's a happy kid, and started singing a happy little tune, like he always does when cleaning up after a movement (I hope this behavior stops before he hits junior high). Then the scene took on a more challenging tone when he looked down and saw the diaper sitting there. Before I could do anything to stop him, he reached down for the diaper, grabbed a corner or two, and whipped his hand up & down frantically. He was like a pint-sized David, slinging a stinky stone at Goliath. Being that I was the only logical person in the room at the time who could play the role of Goliath, and being that I didn't want to get hit in the forehead with a poop, I side-stepped to try to get out of the line of fecal fire. Sure enough, the poop arced out of the diaper, and sure enough, it was heading right to where I was standing a second before. But did I just let it safely fall to the ground and clean it up later? No. I saw something flying, and so without thinking, I caught it, bare-handed. And I didn't just casually let it arc into my palm, either. I full-on *lunged* to snatch the poop out of the air.
Poor choices are the sure sign of a tired mind. Good night.

Denise sang "Happy Birthday" to Gracie!

Today was Gracie's birthday, and this afternoon the respiratory therapist called to say that he had put a speaking valve in Denise's tracheostomy, and Denise wanted to sing "Happy Birthday" to Gracie. At first the plan was to hand the phone to Gracie, but she was still napping at day care. So I had them call back on our house phone and leave a message on the answering machine. Now we can play it over & over for the kids (Gracie loves it, Jacob doesn't recognize that it's mommy's voice). Maybe I should digitize it so you all can download it as an MP3 file. Hmm...

Again, Denise was upset today. She had been crying when I arrived, and indicated that she hates not having tissues or the ability to reach enough to wipe her eyes. She can't sleep. She's always in pain (yet refusing pain meds much of the time when asked). She misses the kids. She doesn't feel like she's getting better. She doesn't think the nurses can clean her up fast enough. I recognize that they're trying (and Denise is not on 1:1 care, so she has to share a nurse with another patient). But I also recognize that when you've messed yourself or have vomit on you, you want it taken care of PDQ. It's those times that I wish I had the skill & authorization to go ahead & do some clean-up myself (and save the more important technical stuff for the nurses). Today I was allowed to stay during the clean-up. It's incredible how they can give a bath & change sheets with someone still in the bed.

Anyway, I acknowledged Denises' frustration. I also tried to be positive, and there was already plenty to be positive about in the morning (and I bet that being able to speak and sing lifted her spirits, too).
Yesterday she was off the vent for almost 6 hours at a time, several times. She was off 18 hours yesterday! Now that's a two-edged sword. Today they took her off the vent at 4:00 in the morning. No wonder she can't sleep.
Her white count was down to 8.2. This hopefully indicates that the current infection is subsiding. That said, how many times have I heard that before? Also, her fever spiked lower last night (101) than the past few nights. Again, how many times have I heard that before?
She got a new PICC line today. Hopefully she won't pull this one out (probably won't, as she's not getting Ativan very frequently anymore).

Tonight I just found out that she was off the vent for an 8-hour stretch, and was sitting up. They put a phone to her ear and let me talk with her. Talk *at* her. They put her back on some dobutamine, and changed out the antibiotic again. I couldn't get any specifics over the phone, but I'll find out in the morning.

On the home front, the kids & I just got back from celebrating Gracie's birthday at Disneyland. A parent from my school works for Disney and signed us in for free this afternoon. Her & her son (one of my students) were our personal guides and provided us with lots of trivia that added to our enjoyment. We got there about 4:30, and left when the park closed at 8:00. It was wonderful... it wasn't very crowded. Since it was her birthday, she got to go to city hall and get a birthday sticker (and all the workers in the park wished her a happy birthday and talked to her). They also have a birthday phone that plays a birthday greeting from a Disney character. She met Snow White by the castle, we rode the carousel, the Dumbo ride, the Pooh ride, and the Peter Pan ride. When we went on the Storybook Land boat ride, she got to sit on the engine cowling with the guide and be the "co-captain" of the boat. We watched the Princess Parade and Ariel from "Little Mermaid" waved at Gracie. And there was ice cream. Now that I think of it, Gracie had no idea what Disneyland is... she only knew that she wanted to go, and some of the characters from Disney movies were there. I told her before we left that it was a theme park. She asked if she could go on the big slide, if I could push her for a long time on the swings, wanted to know if she should bring her swim suit, or the sand toys for the sand area. She also got out the leash for the dog. So her image associated with the word "park" is forever shattered. Now she may never want to go to the park by our house ever again. Jacob enjoyed the trip as well, screaching with glee quite a few times, though he certainly didn't "get it" as much as Gracie did. He operated the lever on the Dumbo ride with his foot so that we could fly up & down, though... his first step toward being a great aviator, perhaps. Gracie got the pink Dumbo. That was a big deal for her. There's a whole new way to enjoy that place when you go with your little kids. To the super school mom & son that blessed us with this trip, thank you, thank you, thank you! Today was one of the most pleasant days we've had in months!

Alhambra area apartment wanted month-to-month

Denise's mom & dad are trying to find something to rent month-to-month in or around the Alhambra area. I forgot to ask Denise's dad about the possibility of renting a room in that area, or how they'll foresee handling furnishings, appliances, cooking, laundry, etc. So at this point, just contact us with any apartment, guest house or room leads you've got. For over 12 weeks, they've been living out of a suitcase either at my house or in a hotel. It's been a grind. They were blessed with a gift of money from their church so that they can stay at a hotel near the hospital a while longer. They would prefer to have an apartment, but the shortest lease they can find is six months.
And this hospital stay ain't going to last that long, right?

5 hours off vent, Mold in lungs, Puncture clear

Here's today's scoop, according to bits & pieces that I was able to get from various people handling Denise. Her doctor felt bad that he couldn't really fill me in, as he had another patient that I assume was pretty bad off and must have been demanding quite a bit of his attention. He did say that she's doing better than yesterday. Sorry, not many specifics for those of you that are enthralled with the meds, techniques & stats. She was apparently off the vent for a 5-hour block of time today, and off for shorter times here & there throughout the day. The lumbar puncture specimen is not growing anything so far. Let's hope that nothing grows as time marches on. There was some mold in the lungs. I assume that would be a manifestation of the cocci (Valley Fever) fungus. Wait & see. Her fevers are climbing up again. A portion of the temperature increase may be due to switching to a version of Ampho B, which Denise has been on & off of many times, and increases fevers. She was not as shaky today, either. After skipping a day with her, it looked to me like the whites of her eyes were less yellow. A respiratory therapist told her that he hadn't seen her in about a week, and she looked much better now. That was good for her to hear, as she said she felt like she wasn't getting better and was very discouraged today. The occupational therapist worked with her and also thought that her shaking had lessened. While they were doing the arm & hand work, I rubbed Denise's feet. All the calluses are falling off. She's going to have the smoothest feet ever, once she's done with this extended spa treatment.

She lipped, "I want to go home" and "Take me home now please." She wrote "I am in constant pain" (she indicated all over, not really concentrated any specific place). She also wrote "I can't sleep." She indicated that it wasn't because of too many visitors or loud visits. It was because of all the jabbing, turning, fevers, ice, cooling blankets, machine noises, lights, loud talking, alarms, trash can emptying, etc. I asked the nurse if there were any procedures that could be batched, so as to create some times when Denise could have a stretch of rest. Unfortunately, Denise is at the mercy of a *very* busy hospital, and has to be taken/have things done at odd times. I killed the lights, closed the blinds, and the nurse rolled the sliding glass door most of the way closed for us. I turned on some mellow music for her so she could relax, then went to the cafeteria for some lunch. I was only gone for about 20-30 minutes, and she was sleeping when I came back. So I just went in the room and sat quietly. The nurse came in and silently did a few things. Then another nurse rolled the door open and started asking Denise's nurse questions, rather loudly. I tried every sign I could to get her to notice that Denise was trying to sleep, but she was focused on Denise's nurse & probably didn't even see me sitting there. Aaaaargh! Fortunately, Denise didn't wake up. Soon thereafter, the physical therapy people came. The nurse politely asked them to return in about two more hours, and they were happy to comply (thank you, if you're reading this!).

Each night we have a bedtime routine that includes some reading out of a children's bible that Gracie has. To keep Jacob from eating the pages, I employ deflection techniques that I learned from Mr. Miyagi in "Karate Kid" as I'm reading. Usually we read, place a bookmark, and pick up where we left off next time. But Gracie's been wanting to hear the story of Naaman every night for at least a week. Short story shorter, Naaman was a guy with a skin disease. He was told to wash himself in the Jordan river to cure it. He was mad, thinking that his healing should be a miraculous wave of the hand or something. Ultimately he did decide to do the river-dip, and was healed. It's not a story that stuck out in my mind as a kid, so I figured that Gracie probably liked the artwork or something. Then tonight we got done reading that story and Gracie asked if the "new hospital" is near a river. All the pieces fell into place. Pretty good thinking for a kid that turns 4 tomorrow. Anyway, I answered "No," being that I don't consider the L.A. River to be a river (they filmed a car race there for the movie "Grease").

Oh, last night's bit about the Nigerian "business" deal... Yes, I know it's a scam. Next time you have time to waste and want a chuckle, do an internet search for "scambaiting." Still, thank you to the concerned people that left urgent phone messages and sent emails to warn me.

Says she's miserable, Away from work a few weeks

I didn’t make it to the hospital today, as I was still dealing with this stomach thing. Both kids seem much better, though. Fortunately my cousin stayed overnight last night and helped with the kids while I was feeling cruddy, and my folks came over this afternoon. Also while I was feeling cruddy today, my neighbors mowed & edged the lawn, swept, dusted the cobwebs off the house… it’s incredible what people will do for you if you neglect your property and let your house become the biggest eyesore on the block. Seriously, though, thanks! What a blessing!
Now on to Denise:

I couldn’t find out anything earlier today. Every time I called, it was “Call back in 10 minutes.” Finally tonight, I was able to get some info from the nurse. Denise was off the vent for as much as a four-hour block of time. She’s resting tonight and going to get a unit of blood. Temperature went up to 101 today (101.4 last night), she had the cooling blanket earlier. Heart rate is hovering in the 120s, but hopefully the increase in blood volume will lower the heart rate. Blood pressure was at 113 systolic. She’s been shaky again today, possibly due to the electrolyte imbalance (we hope no neurological problems due to infection or all that she’s been through). Tube feeding was set to 60cc/hr (that’d down from yesterday, I believe). Liver function continues to progress toward normal, and kidneys are doing a decent job. I hope that tomorrow we can hear results from the spinal tap (good results, that is). Her mom added that she was there during a time when Denise had a speaking valve in. It didn’t last very long. What looked like blood was coughed up with the usual secretions. Denise said “I love you” a couple times. Denise also said either “Tell Phil I’m miserable” or “Can’t you tell I’m miserable?” Her mom couldn’t tell which. Either way, I’m really frustrated that I couldn’t be there with her.

Before this post, I was replying to an email from someone in Nigeria that’s the widow of a slain dignitary that selected ME, out of billions of people all over the world, to be her most trusted contact in moving several million dollars out of her account (10% of which I would get to pocket for myself), so as to not be unfairly taken by the vulturous ex-business partners of her deceased husband. She wanted my contact information. I provided the name, phone number & address of a direct-mail marketing firm that sent me some unsolicited junk mail yesterday.

In a much more important communication, I received an email from someone a while back in response to my anxiety about how to juggle everything that’s going on. As far as emails, he’s a man of few words, and what he has to say is worth listening to. “God has given us all limits as a blessing. Recognizing and embracing yours helps you, Denise, and the kids. I will pray so.” Tomorrow I will not be going to work, starting a leave that I anticipate will last for several weeks. The computer lab’s my baby, and I’ve nurtured it since it had Apple IIe computers in it (I’ve been there 12 years). Someone else pointed out that I’d worry about the computer lab & curriculum while I’m gone. It was also pointed out to me that Denise is all about being mommy, and she’s worried about the kids while she’s gone just as much, if not more, than I’d be worried about the lab. Kids win. Use up those sick days while Denise is at a hospital far away. Be daddy. The kids haven’t seen me much more than they’ve seen Denise. So I’ve been trying to get back to our regular routine lately so as to provide some stability, structure, peace, security, etc. A big part of me is relieved that I can be the first person the kids see in the morning, drop them off at day care for a few hours, spend time with Denise, then pick them up and be with them the rest of the day & night until they go to bed. Denise exhibited some relief that I would be with the kids as much as possible. I might arrange having someone at my house for a few hours after the kids go to bed so that I can drive to the hospital again at night a few times a week to visit with Denise, too.

Sickness and death are evil. But I’m glad that while we’re dealing with one and scared of the other at times, I’m encouraged by hearing a few times about how our situation has been beneficial to other people and/or their relationships in one way or another. God’s got a way of redeeming evil in order to pull something good out of it. Today a friend called & the conversation turned to how the kids were doing. She said she loved the times she’s taken care of them, and gotten somewhat attached. This is a real kick in the pants for her. See, she’s a little younger than me, but has had a heart condition for the past few years that’s life threatening. As a result of knowing that she could die at any moment (a boat we’re all in), she’s realized that she’s been sort of distancing herself from loved ones so that they won’t be crushed when she’s gone. Caring so much about my kids might be an icebreaker of sorts. I hope that my situation benefits her & her loved ones. Who knows… maybe her situation will help someone that’s reading tonight’s post.