Re-rehab, Feeding tube details, Bedsore itchy

Tonight Denise is back in her old rehab room 4124 at Huntington Hospital's La Vina building.
She welcomes visitors M-F 3pm-8pm and any time on Saturday & Sunday.
Park in the La Vina lot off of Pasadena Ave. Parking is free on weekends.
Phone number direct to her room is (626) 535-6458.
Click here to get to a page on the hospital's website that lets you send her email. Be sure to put "Denise Williams room 4124" in the subject line so the volunteers know where to drop off the emails. She loves getting them, whether from family & friends or complete strangers.

I learned today that the feeding tube might have been causing just enough irritation to cause the vomiting. She's been hurl-free all day, and able to eat increasing amounts. She needs it, as she's malnourished. Now that I've said that, I'd better stand back, as bus loads of my relatives will probably drop off every dish imaginable to get Denise eating well again. Doesn't matter what the problem is: Fix it with food. Anyway, feeding tube details: there are two basic types of retaining mechanisms that can keep a feeding tube in place: balloon or umbrella. Her feeding tube had the umbrella style stump to keep it in place. Not knowing squat about these things (I never did research them), I was worried that the umbrella part was broken off and would be stuck inside of her. I was relieved to find out that the umbrella stumpy thingie was with the tube when it was pulled out. My other concern was that if there was a stoma through which the feeding tube passed, did it get stitched back up? Apparently it's self-sealing, and would heal much faster than the skin at the insertion site. The doctor thought that the skin looked good enough that it might not need the dressing anymore. I just hope that perhaps the ab swelling will subside.

Denise's bedsore is healing nicely. Along with the flesh filling back in, the nerves are also growing back in. Not only is it painful, but for the last two or three days, Denise has had an itching sensation in the bedsore that's driving her nuts. She just can't get comfortable. We had a visit from the pastor today, and the topic of pain & suffering came up. I related that the book I read early on in this ordeal, "Where Is God When It Hurts?" stated that pain is painful (duh), but also serves the positive function of telling us when something's wrong so as to avoid potential or further injury. So her pain & itching, while uncomfortable, are also signs that things are healing. I also learned from that book that leprosoy isn't a disease in which body parts fall off (as I'd always thought up until a couple months ago). Instead, it's a disease that impairs a nerve's ability to sense/send sensations. So people with leprosy can get injured, not feel the warning signs of pain, and then any body parts that rot & fall off are secondary to the leprosy. Denise postulated that if she had leprosy, maybe her butt would fall off and then she wouldn't feel the pain of her bedsore.

I know that some of the parents from my school work at Huntington Hospital. Perhaps one of you can answer this question: In the hospital's east tower, what's on the third floor? I noticed that the elevators go G-1-2-4-5-6. No three. I've taken the stairs out of curiosity (and to get some exercise) and the doors on floor three have intimidating "Authorized Personnel Only" signs on them. I don't know the secret handshake, so I didn't even try to go in. Do they train spies on floor three or something?

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J/G-tube in wrong place, Eating & Hearing OK

In 1980, a one-hit-wonder band called The Vapors put out a catchy little song called "Turning Japanese." Denise & I love that song, and today it has newfound meaning for me. A portion of the lyrics:
"I got your picture, I got your picture.
I'd like a million of you over myself.
I want a doctor to take a picture
So I can look at you from inside as well."

Wish granted...

The GI doctor provided a procedure report and some pictures, like this one of the inside of Denise's stomach. The business end of the feeding tube came out of place and was between the stomach and the ab lining. Bad news, as that placement would leak food into that space, causing infection and malnutrition. The doctor indicated that we're fortunate that this was caught in time. The "migration" of the feeding tube and the infection at the insertion site that I mentioned last night was addressed in the procedure report:
"A small sliding hiatal hernia was seen. The GT (gastrostomy tube) stump was not identified. At its site, a stoma was seen oozing a white material that appears to be pus (picture above). It was obvious that the GT stump was unfortunately in the subcutaneous space. The GT was pulled by traction."

Good news in the eating department! She's eating well and holding all her food down. They have a calorie counting chart on her door and the nurses are supposed to keep track of what she's eating. If we give her snacks, we have to jot those down, too. If, if, *if* she can get enough calories from eating, they won't bother putting a feeding tube back in. Her Bard Jejunal Feeding/Gastric Decompression Tube is sitting in the package on her sink, though, just in case she needs it. There's also intravenous nutrition as an option. But she won't need either, right? RIGHT?!?

Hearing: There was some concern that the meningitis had damaged her hearing, but that possibility seems a little less... possible. We've got some indicators that her hearing will be OK. She's been getting Debrox eardrops for the last few days and she feels that her hearing has improved. Yay! Keep in your mind that her vision is still worse due to all she's been through. We're waiting for the opthomology people to check her again to find out the extent of the damage and what, if anything, can be done about it.

Other tidbits: The ID doctor and the hospitalist both think that Denise may be shipped back to the rehab side of the hospital soon. There have been no seizures (she's on Depakote), no fevers (voriconazole & ampicillin are knocking out the germs), blood pressure is workable (110-120 systolic), heart rate's fast (110... it's going to take a while to slow down after this four-month marathon), she hasn't done the technicolor yawn since before breakfast yesterday, and Denise certainly wants to eat, work out, and go home.

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No j-tube reinsertion, No vomit, Sat herself up

Denise went to have an endoscopic look-see and the jejunum feeding tube reinserted. However, the tube was not placed. There was some infection at the insertion site, and they decided to wait. The nurse said that the gastrostomy feeding tube had "migrated" and gave me the doctor's number. I hope to find out what that's all about tomorrow. In the mean time, she had no food today until dinner time, and was able to hold that down, as of the time I left. My understanding is that yesterday's lunch and dinner stayed down also. Might be that the tube itself was causing the vomiting... who knows?
Strengthwise, things went well today, as Denise was standing three times (5 seconds to 30 seconds each time), and was shifting weight on her feet. I remember having to do that weight shifting thing after I had my knee reconstructed a couple of years ago. I forgot to mention that Denise got a trapeze bar mounted on her bed over the weekend so she can roll herself easier. At dinner tonight, she got her legs off the edge of the bed and was able to push herself into an upright sitting position unassisted. That's the first I've seen her do that!
About the picture up at the top of tonight's post... This afternoon Gracie said she wanted to go on an airplane ride again (we flew to Tennessee over the summer). To punctuate her desire, she put on her "Tennessee costume" and dressed Jacob up in his University of Tennessee onesie. Yes, Denise & I also have orange t-shirts from UT. We don't particularly follow college sports, but we *did* figure out that if we wanted to fit in while on our Tennessee vacation, wearing orange was a darn good start.

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New feeding tube on deck, Less cookie-tossing

Hopefully everyone's returned home from the Thanksgiving weekend, and no worse for the wear. In the last post, I listed a few things I was thankful for. I read some of the posts from the opening days of our ordeal in July, and from the middle of September, just to compare with how things are now. Yes, she is still very ill, I don't really anticipate her being home for Christmas, and we have lots more cheerleading to do for Denise. But she's way, way, WAY better now than before. This was punctuated by a visit from a friend today that said the last time she saw Denise, she was on a ventilator, unable to speak or move, heavily sedated... it was great for them to be able to interact again.
Tomorrow morning a new feeding tube will be put in. The feeding tube came out today, by accident. The nurse said they went to move Denise, and there was the tube, all pulled out. On the positive side, the vomiting has been less frequent yesterday & today. It's still an issue, but she's been able to eat a meal here & there without tossing her cookies. Let's hope that the trend can continue so she can get some nutrition and get on the road to healing. Heart rate is around 110 with help of coreg, blood pressure 110-120 systolic, no fevers. I provided with a printout of labs from today and yesterday. I noticed that one of the liver enzymes was elevated again, and her potassium went high (6.2).

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Thanksgiving picture, Wound vac restarted, Hearing?

Thanksgiving Day: Here's a picture of us with Denise's mom, dad, & one of her sisters. You know how it is... the probability of getting a good group picture is inversely proportional to the number of members in the group. So I've got my eyes closed. Other than that, it looks pretty good, don't you think?
I was thankful that Denise is not only still alive, but able to speak, eat, breathe without extra oxygen, doesn't need any chest tubes, doesn't need dialysis anymore, isn't jaundiced, can pass food, can move, doesn't need a swan catheter... the list goes on & on. I'm thankful that even if, even *when* things take the ultimate bad turn, as we were worried would happen several times during the last four months, we have the faith & confidence that this life ain't all there is. I'm thankful for the access we've had to top-notch medical professionals (especially THE Great Physician, with whom we're consulting regularly), facilities, and advancements. I'm thankful for your prayers, concern, actions, and every effort that's directed at helping my wife through this. Even with her in the hospital, I think I've got way more things I can be thankful for than things to gripe about.

A family from my school provided us with a heat & serve family meal from Marie Callender's and a real Honeybaked ham (thank you!). Denise got into a wheelchair and joined me & the kids, her parents & one of her sisters for Thanksgiving lunch on a balcony that adjoins a waiting room. Jacob even reached over toward mommy and wanted to sit on her. She ate a lot... and threw up a lot. Feedings have started through the j-tube, and that's staying down. But Denise isn't able to hold much down that she takes by mouth. Today she wanted sushi, so I brought her some California rolls. She ate maybe 1/2 of one. She downed almost an entire strawberry smoothie. Willing to keep trying, she's asked me to bring her some Thai food next time, and more Honeybaked ham. She still wants some tamales, Hawaiian pizza, gyros... she's willing to try anything, even though she's establishing a track record of hurling after eating.

Temps the last two days are not to "fever" level. The ID doctor thought that perhaps she'd aspirated some food, and that triggered the fever response a few days ago. He stated yesterday that if things continue to be stable, they will consider sending her back to the rehab part of the hospital after the weekend. Heart rate has been between 114 & 135. That spike to 135 has been higher than I've heard in a while. Blood pressure has varied between 100 & 120 systolic. Lungs still sound good, though she gets breathing treatments sometimes. The wound vac was restarted yesterday.

Denise said that she feels like her ears are clogged. The left ear is particularly muffled sounding. She thinks she's yelling when she talks, but she's not. I can talk in a normal volume and she can hear. The ID doctor looked in her ears today and found that there is more was buildup in the left ear than the right. So hopefully eardrops to drain the was will do the trick. Otherwise, there's the possibility that the meningitis that she had may have temporarily or permanently damaged her hearing. As is frequently the case, wait & see.

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Throwing up, Paracentesis, Tired

Denise's feeding takes center stage in tonight's post. Even sitting in a chair, she's not holding things down very well. Gastro tube feedings during the night were restarted recently. Her doctor from USC came by to check on her, and noted that the gastro tube feeding wouldn't work as good as the jejunum tube feeding. Weeks ago, while she was still at USC, they put in a J/G tube so feedings could go to either site. The thinking was that if she were getting g-tube feedings into the stomach, there was only one sphincter muscle to keep food from going back up her throat. But if she were getting j-tube feedings into the jejunum (beginning of the intestine; food's next stop after it leaves the stomach), there would be two sphincter muscles acting as roadblocks to keep food from being thrown up. I could quip that the concept of two sphincters being better than one is also the basis for each state having two senators, but that comment would be beyond the scope of this web site. But I digress... Anyway, I thought it was kind of funny that the doctor brought that up. In the rehab section of the hospital, when they said they were doing g-tube feedings, I thought, "Hmm... maybe I should suggest the j-tube instead. Aw, but what do I know?"
She had an x-ray and ultrasound-guided paracentesis today, but I forgot to ask how much fluid was removed. Hopefully the lack of fluid will help keep her food from squishing out of her. Blood pressure was 116/64, heart rate 110, no fevers today. She stood up using a walker (with some help).
She started getting tired long before dinner. I told her that she didn't have to stay awake for me; she needed rest and could nap. She said "Thank you" and closed her eyes. She was almost able to nap through having the dressing changed on her bedsore (that's REALLY tired!). The bedsore looks much better. There's still a big hole, but it's not as deep as last week, nor as large in diameter. Color is good. The wound vac was discontinued a few days ago because there was no longer a need to evacuate the excessive drainage.
We had another movie date today to try and finish the first Lord of the Rings movie. But she fell asleep before the end of the movie. That's usually my job. Anyway, she needs the rest. And so do I, so I'm going to bed now. By the way, if you receive these updates via email, don't trust the time stamps on your emails... I'm not up that late. The emails go out in batches, and the first batch sometimes doesn't go out until forty minutes after I add a post to this blog. Sometimes I'll finish a post at 10:30pm (like tonight), and you won't get it in your inbox until 2am. Really, I do sleep (if the kids don't wake up & jump into bed in the middle of the night).

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Temp 102.4, Lumbar puncture, Movie date

Last night's temp went to 102.4, but today's temp hasn't crossed the 100 mark.
Lumbar puncture was performed last night. I got to help keep Denise in a little ball shape so that the needle could more easily get between her vertibrae. The first vial was a little pink from some blood, the other three vials were crystal-clear. If they were cloudy, that'd indicate the presence of white blood cells (and infection). Today the ID doctor said that she had 3 white blood cells. That's apparently on the upper end of being OK. More WBCs means bigger infection in the spinal/brain fluid. (Yes, a "lumbar puncture" is the same as a "spinal tap." Fortunately, Denise only went to three, and not to eleven). :O)
She's been having trouble holding food down, so g-tube feedings will resume again. Tonight she was really in the mood for Thai food. The closest offering on the menu was tofu & rice stir fry. She puked it right back up, then called me to see if I could bring her some tamales, because those sounded good, too. She wants to eat, alright. You name the cuisine, and we probably have some component of it in the fridge, freezer, or pantry. Being us, of course we have tamales in the freezer. So I warmed one up and sent it over to her with her folks. As I'm writing this, I'm waiting to hear how that went. Her best meal seems to be lunch. She's been sitting at the edge of her bed for meals, which is also "exercise." After a while, she gets tired and needs to lay down. It's possible that she doesn't have enough "upright" time after eating. We might try moving her to a chair with armrests & a high back, or just sit the bed up, for meals. Those canned nutrition drinks gross her out. But we did find that if we mix one drop of peppermint oil to a can of chocolate Ensure and pour it into a cup of ice, it's almost like getting a mint-chocolate Frappuccino from Starbucks. Almost.
We finally went on a "date to the movies" this afternoon. We've been borrowing a portable DVD player so she can see the home video of the kids, and she got the idea to watch a regular movie. She picked the Lord of the Rings movies. Neither of us have read the books, but we've heard that they're very good, and the movie previews looked incredible. Sadly, as detailed as the movie is so far, I have no clue what's going on or why (maybe I'll read the book yet... or at least hear the audiobook). I can, however, relate to the fixation on finding a ring... we've not been able to find Denise's wedding ring for over a year. It went missing about the time that Gracie not only started playing dress-up (yes, Denise let her try on her ring), but also started to be very "helpful" by putting things in the trash can, down the sink, the toilet... You get the picture. Anyway, we did get Denise a "placeholder" ring, but it's nowhere near as powerful as the ring from the movie we're watching.

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Moved from rehab to acute care room, Fever 102

Denise's anticipated move from a rehab room to a "regular" room came early this morning.
Her new room is 530 east, and the room phone number is 626-535-6070.
While she's capable of working to get stronger in rehab, there are some issues that they'd like to keep a closer eye on, such as monitoring seizure activity and her fever going to 102 last night.

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Picture of Jacob, Slight fever,

Here is a recent picture of Jacob to start off tonight's post. Were the camera faster, you would have seen that bottle up the other nostril. Trust me, I scrambled and even tried to get him to do it again. But this is the best we could do. Still, pretty good. Fathers live for photo ops like this one here. At least, fathers like me live for them. Well, if you've never met us, now you know what Denise, Gracie & Jacob look like. I'll try to get a picture of myself posted one of these days. Hopefully it'll beat this picture of Jacob.

The bad news first: A slight fever is going on... just 100.6. But it's enough to whip out the cooling blanket and make me a little edgy. The neurologist said that the seizure was caused not by meds, but by the effects of the cocci on the brain. The anti-seizure meds are working well, though (whew!). And there was some vomit. I guess root beer has more carbonation than other sodas. A friend suggested opening the next can of A&W and let it go a little flat before giving it to Denise. Since she's in it for the taste, and not trying to win any belching trophies, we'll just try giving her flat root beer.

OK, now that the ugly stuff's out of the way, on to the bright side of things. We got to see Denise roll herself down the hallway, and she was wearing some pajamas instead of the usual hospital gown. Being able to dress "normal" is a big morale-booster. She even got to go outside into the courtyard. The weather was about as perfect as could be for that. She's been having trouble with the potassium supplements (liquid's nasty, pill form is horse pill-sized and like swallowing a piece of chalk. Someobody gave her the great idea of trying bananas instead. That's going well so far. Her appetite continues to grow. Her doctor from USC came by for a visit. The kids got to visit tonight, and they batted a balloon around. Jacob still wasn't as cuddly as Gracie, but he obviously had a great time throwing the ball with mommy. It's a huge relief to see him have fun with her. I had been worried that he didn't recognize her, or was scared of the hospital version of Denise. I show him pictures of Denise, and he says "Mama." But the hospital version of Denise looks much different than the pre-hospital mommy that he's known. Again, though, progress is being made. A neighbor let us borrow a portable DVD player with a flip-up screen. I can hook up the video camera to it (video camera screen was too small & Denise couldn't see it). Now Denise is able to see recent footage of the kids, thanks to the larger screen. Speaking of such things, I found moviess on my front porch. No card, though. But thank you to whoever just started our Christmas DVD collection! I remember the Hanukah Harry skit from SNL, and can't wait to see it again. Holiday Inn is one we've never seen, but it's been on the Christmas "rent it" list for years, and we're eager to see it.

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First family meal in four months, Seizure questions, McD's

Today's lunch was the first meal that we've eaten as a family in four months. For other reasons, it today was a much better day than the previous couple of days. She sounded more animated, said she felt more alert, had a bigger appetite, and some lab results turned out a little better. Nightly gastro tube feeding has been discontinued (but the tube's still in). PT assisted her in taking five steps, and she's getting to the point where she can roll herself from side to side. It's a workout, but she can do it.
Earlier today she asked me to bring her a burger and an A&W root beer. She only ate about a third of the burger, but tonight she ate most of her pork & spiced peaches dinner (a favorite whenever we go to Cracker Barrel). I asked her what ideas she had for Thanksgiving this year. She said that if I wasn't going to smoke a turkey (nope... I finally rusted out our smoker and threw it away last spring), then a HoneyBaked ham sounded good. So it seems that the key to unlocking her appetite is hog... see the pattern? Ham for Thanksgiving, pork tenderloin for dinner, craving a hamburger for lunch (eh... close enough, right?). By the way, when we say "HoneyBaked," we don't usually mean that actual brand. We fake it by getting a cheap-o ham, rubbing it with sugar & pumpkin pie spices, then hitting it with a blow torch to bubble & crystalize the crust. Try it with the kids sometime... pretty fun.

The only downers that I'm aware of today are that she gagged on a pill & vomited a little after breakfast (was puke-free for about two days). And she's concerned about having seizures. Me too. But I reassured her that she's on anti-seizure meds (to seize the seizures, I suppose), there are blankets taped to the bed rails to protect her, and there's a sitter there during the night shift to keep a constant eye on her. Denise asked me questions about the seizures. She remembered blacking out once, remembered "somehow figuring out a number" for when she was going to die, and also remembered exclaiming "Heaven!" because she thought she was going to die. She doesn't remember saying things over & over, though. I'm encouraged by seeing her appetite and strength increase, even if ever so slowly. I'm also encouraged by how "with it" she was today mentally.

This morning I took the kids to McDonald's (gasp!) for breakfast & playing on their playground. Understand that I was raised on In-n-Out Burger, and McDonald's isn't even a blip on my fast food radar screen (except for the fries & the Shamrock Shakes in March). Any time she suggests McDonald's I say "No" and we go somewhere else. Mean? The kids will thank me later. So to Gracie, it was a big, BIG deal that I was taking them to McDonald's. She asked if I was being *brave* by taking them there myself. Thinking she was talking about my dislike of the food, I said "Yes." Later, while we were eating our breakfasts, Gracie exclaimed, "Daddy! There's a clown on your cup! You can turn it and not see it!" Sure enough, on my cup of orange juice, was a big ol' Ronald McDonald. I said, "It's alright... it doesn't bother me, but thank you for letting me know, Gracie." She asked, "Are you not afraid of clowns anymore because I'm not afraid of clowns?" Then it hit me. When Gracie would ask why we couldn't go to McDonald's, I'd joke around and say that it's because I don't like clowns. That coulrophobia bit has saved me from having to eat at McDonald's many times, but today I blew my cover.
Clowns still creep me out, though.

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Four Months in the hospital, Denise doesn't want to hurt anymore

Today marks four months in the hospital... a third of a year.
Not much today was earth-shaking. No seizures, blood pressure improved to 110 systolic (coreg's being held off if she dips below 105), potassium keeps bottoming out (3.2). She's tired & gets dizzy if sitting up too long. A limit on fluid intake has been set at 1500ml/day, I assume in response to her unusual desire to keep drinking water the day of her seizure (water's good for you... but it is possible to get too much). The wound vac has been gone for a day or two (the last time I saw it was when Denise had the seizure on Wednesday. I don't know why it was discontinued, but she now has an Acticoat dressing instead. The Acticoat dressing is super-fancy, and in researching it, I just now learned that it has silver in it. What... once she wears it long enough, they'll upgrade her to gold and then platinum status or something?

Tonight Denise was very weary and said she doesn't want to hurt anymore. That reminded me of something I heard on the radio yesterday. There are two types of people in the world: those that are hurting now and those that will be hurting. I keep telling her that I wish I could trade places with her for a while to give her a break. I'm sure a lot of you would do the same.

A couple of the prayer moms from PCS showed up for a short visit , and they even outfitted Denise with a new pair of jammies (thank you!). Even though she could hardly stay awake, she was greatly encouraged. We met a lady from church that took the time to visit, too. Lake Avenue's a huge church, so I think it's possible to attend there for a lifetime and still not get to meet everyone!

I finally sent out "thank you" notes from Gracie's birthday. Hopefully everyone will get their note, for the correct gift, with the correct spelling of the names. If not, please don't be offended. I had a couple people help record the gifts and write thank you notes. Now I'll tackle the mound of other "thank you" notes that I want to write!

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On seizure meds, tired but doing better

After yesterday afternoon & evening, today was great. Denise was sleeping most of the day today. But when she was awake (tired, but awake), she was answering questions appropriately, smiled & giggled a few times, never seemed "spaced out," and was not repeating things. Her only complaints were dizziness and feeling tired. She wanted to sit up at the edge of her bed (and did much of the work herself) to eat breakfast. At lunch time, she was in a wheelchair. During a PT session, she tried wheeling herself around a little bit, but couldn't due to the IV in her arm. The PT had a balloon and they were hitting it back & forth. The next time I bring the kids, I'm bringing a punching balloon, too. Maybe I'll pick up one of those small parachutes so we can all play with that together, too (BTW, anybody know where I can get one BESIDES a teacher $upply $tore?). Tonight at bed time, Gracie asked if she could go see mommy tomorrow. I told her mommy needs rest in order to heal and come home to us, that she was sleeping most of the day, and we'll have to wait & see how mommy feels tomorrow.

Depakote was started up today for the seizures, and seemed to be doing the trick. The MRI showed calcification of lesions (scarring) on the basal ganglia... evidence that at one point, the cocci was in there in the brain. My very limited understanding of what I'm hearing makes me think that the seizures resulted from brain abnormalities rather than an electrolyte imbalance. Fortunately, I've got no pride in this ordeal, and hope very much that my thinking is wrong. That said, if it *is* a brain issue, then coping with seizures will be added to our plate. I related this to a neighbor tonight, and he put things in perspective for me again: "Consider the alternative." Yup. I need to make a poster of that statement. I'm also encouraged by having taught students over the years that were on anti-seizure meds, and they've been productive, highly-functional, and normal in every way as far as I could tell. There may be a lumbar puncture on the horizon to help the neurologists figure out what course to plot. The team of doctors may consider moving her out of rehab and into the regular part of the hospital (at this point, good thing we're not at Casa Colina, huh?). Apparently Huntington has an intermediate level of care that's wedged between ICU and the regular rooms.

Hyponatremia... I don't know that this is a condition that Denise is dealing with, nor do I know if it's related to yesterday's episodes. But those of you that have known us for at least four years will recall that our daughter Gracie was in the neonatal ICU as an infant for several weeks, and things looked pretty grim for her at that time. Hyponatremia (precipitated by gestational diabetes that went undetected) was one of the conditions present in Gracie. There's more about hyponatremia at the end of tonight's post. I just thought it was interesting to finally hear a medical term that I was already familiar with, apart from Denise's plight. Gracie being near death and pulling through as an infant has given me the hope that Denise can pull through as a grown-up. Yes, our family has already had our lifetime quota of hospitalization.

The following is blatantly copied & pasted from an email from my nurse aunt. Sorry to cheat... I'm tired. So here are the stats & labs for the medically-inclined...

Na-sodium 130 (low  norm 136-145)
K-potassium 3.9
Cl-chloride 99
CO2- 21
BUN-2 (norm 7-26)
Creat 0.3 (norm 0.5 -1.2)
Glucose 98
Ca-calciuim 8.6
Mg-magnesium 1.6 (was given 2 gms IV today)
Dilantin 8.3 (dc'd today)
On Depakote now.
WBC 10.6
hb-13.2
hct-40.2
plt-318
11/16  liver enzymes
ALT  11(norm 30-65)
AST  15( norm 15-37)
ALK PHOS  417 (norm 50-136) elevated but down from the 700s it was)
Blood, Urine, and C dif cultures  this week were negative.
The MRSA culture of the nose is not back yet.
VS tonight- BP 90/70 T-37.1C (98.6 F) P-88 R-20

Hyponatremia - related to electrolyte imbalance
Didn't ask what her Na(sodium) was yesterday or the day before. If
it was 125 or below that can cause seizure.
Normal concentration of sodium in the blood plasma is 136-145 mM.
Hyponatremia occurs when sodium falls below 130 mM. Plasma sodium
levels of 125 mM or less are dangerous and can result in seizures and coma.Drinking
excess water sometimes causes hyponatremia, because the absorption of
water into the bloodstream can dilute the sodium in the blood. This
cause of hyponatremia is rare, but has been found in psychotic patients
who compulsively drink more than 20 liters of water per day. Excessive
drinking of beer, which is mainly water and low in sodium, can also
produce hyponatremia when combined with a poor diet.
(doubt this is it but she was drinking massive amounts of water yesterday)
Symptoms of moderate hyponatremia include tiredness, disorientation, headache,
muscle cramps, and nausea. Severe hyponatremia can lead to seizures and
coma. These neurological symptoms are thought to result from the
movement of water into brain cells, causing them to swell and disrupt
their functioning. In most cases of hyponatremia, doctors are primarily concerned with
discovering the underlying disease causing the decline in plasma sodium
levels.

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Seizure, EEG

Denise had a seizure approximately 3:15pm. I was with her through it, as was her wound care specialist (and a batch of nurses & doctors toward the end). I regret that I didn't remember to look at the clock at the onset, but I would estimate perhaps a minute in length. She was laying down to have her bedsore checked, and appeared to be reaching and looking up behind her and to the right, as if trying to grasp something at the head of the bed. I asked if she was trying to look at something, and then noticed that her eyes were rolling up, arms & hands contracted toward her body. I told the wound care tech that she appeared to be having a seizure, she concurred, and called for help. Anticipating being asked to leave, I quickly grabbed my things as people poured into the room. Nobody asked me to go, so I spent a little more time with Denise. Toward the end of the episode, she relaxed and I got into her field of vision to let her know I loved her & knew she loved me, even if she might not be able to respond at that time. Right about that point, I was asked to leave the room. I appreciate the stream of communication I received during the few minutes I was in the waiting room, as well as the quick-acting chaplains. Nurses & doctors poked their heads in to keep me up on what they knew. A few minutes later I went back into the room and Denise said she remembered blacking out.

Before that episode, a nurse called to ask if I could bring some food that Denise would like to eat, and maybe see if I could sooth Denise a bit, as she seemed anxious. Denise said that she likes the food, but just can't eat much, both because of appetite & so much to do during the day. Denise thought that maybe some non-perishable snacks would be good, and she asked for Fig Newtons & protein bars. I bought some and arrived while Denise was eating lunch. Our pastor was visiting, and he noticed that Denise seemed anxious. She was imagining that she had messed herself and it was all over her gown & sheets (that belief persisted right up until her seizure). The PT came in and, with me holding her gown so it "wouldn't get dirty," Denise stood up twice. We got to hug each other while standing up for the first time in months. When PT was over, we ate lunch together for the first time in months (she ate a Fig Newton, a Strawberry Newton, and about a fourth of a protein bar). In addition to imagining the soiling, she continued to be slow to respond in conversation at times, and was also talking about numbers again (2, 7, 39, and 100 being the most popular, try them for your lotto tickets & see what happens).

After the seizure, she received Cerebyx (fosphenytoin? dilantin? I heard 'em all). She had dizziness & a headache. The creeping numbness that she experienced the other day came back, and she was anxious about the feeling that her throad was constricting. In order to convince herself that she could still breathe, she would drink water or nibble on food. She drank a LOT of water this afternoon & evening. She was able to hold a conversation, but increasingly would repeat numbers or phrases ("Praise God" & "Heaven") over & over. By the evening, seldom could she answer a question appropriately (she'd keep repeating whatever number or phrase she was on). Sometimes she'd stop & stare off for a moment. It got to the point that a neurologist thought it best to sedate her with some Ativan, stating that until proven otherwise, he's going to count the repetitive behavior as seizure activity. She was, however, able to follow commands to raise her right hand and show two fingers, as well as answer "How do you feel?" (her answer was "Good."). As I left tonight, she was getting an EEG and resting fairly well. So while we're waiting & seeing, would you mind tossing up some extra, extra, extra prayer? I was ready long ago for Denise to come back home to us.

Here's what else my weary brain is able to remember... They're going to measure cardiac enzymes, EKG again in the morning, just to rule out a highly unlikely heart attack. MRI showed nothing new... some meningeal swelling from the cocci, but not bad, nothing otherwise notable. There was some concern about the ventricles in the brain being dilated (or not... I can't remember and probably wouldn't understand anyway), but any concern was laid to rest. I don't know... maybe they thought that the ventricles from the heart were there instead. Speculation on the causes of the confusion & seizure ranges from electrolyte imbalance to the liver not being fully on-line (and thereby allowing meds to have an amplified effect) to the meningitis.

Finally, some lighter stuff: I just found out that a charge nurse in the rehab, the one that gave us the tour of the facility, is the mother of one of our school secretaries at Pasadena Christian School. One of the nurses that Denise had today attended PCS from kindergarten through sixth grade, leaving in 1969, I believe she said. And my long-term sub in the computer lab (who was first one of Denise's college buddies), is also super-handy with kids while outside the classroom... she took care of mine in a pinch this afternoon, as did some some of my neighbors. Thanks, everyone!

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Better day, Loopy, No more isolation

Denise said she had a much better day today. The schedule of therapy resumed, so she rode in the wheelchair, bathed & dressed herself (she was especailly proud of doing her socks by herself). One of the PTs from USC popped in for a visit. Denise said she loved the visit but felt loopy. Read on.

Isolation is a thing of the past, it seems. When we visited we didn't have to wear the gloves, gown & mask anymore! Jacob continues to get more comfortable with mommy. The lack of all the isolation measures probably help. Both kids sat on the bed next to Denise. Gracie snuggled. Jacob kept taking the bed phone off the rail and saying, "Hello," then hanging it up again.
Denise had one vomiting episode today, not eating much, no fever, still on amikacin for the pseudomonas, ab/pelvic CT scan showed some abnormality with the psoas muscle. We've had that before, but it turned out to be nothing. One of the teachers from my school shared with me her hospital experience (it was scary), and it was due to an infection in the psoas muscle. One of the doctors came in tonight and said that there's a head CT scan or MRI on the horizon.

The pain from the g-tube and the bedsore were not as pronounced today. She sounded spacey over the phone this afternoon, and I wondered if she got morphine or something to deaden the pain. She said she did get morphine. Our visit tonight was interesting. She was definitely not as "with-it" as she's been previously. She had a fixation about "counting 189 things and the 189th thing was real." She tried counting things on TV, letters in a book, footsteps that she thought she heard... weird stuff. She also said she knew when she was going to die: Age 89. Better then than now, I figure. She happily noted, "Honey, you know you'll probably be dead by then?" Cheery as can be, she is. Get a load of this next bit: Her hair's very thin and falls out easily, to the point of being bald on the back of her head (laying in bed, nutritional issues). Those of you that have known her for a long time probably can't imagine her with thin hair, or even being able to see her scalp. But it's true! Anyway, at one point tonight my mom told Denise that she thought her hair looked lovely. Denise grabbed a handful of it, pulled it out and handed it to my mom, pleasantly saying "Oh, here... have some."

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Creeping numbness panic, Great EF improvement

Of the several hours of therapy scheduled, very little happened. Denise just wasn't feeling well or able to get comfortable. The magnifying glass isn't helping her see print very well, and that was disappointing. She noticed that glare is a problem, and it's easier to see at night in dim light than during the day in bright light. She had some vomiting episodes throughout the day & couldn't really hold anything down. She was very discouraged about that late this morning. A paracentesis was performed this afternoon and 4 liters of clear fluid were drawn from her abdomen. Tonight she had a panic because (probably due to dehydration) she had a creeping numbness moving on her chest & up her throat. She called me from her bed phone (couldn't reach the nurse call button... it was there, but slid way down the bedrail so she couldn't reach it). I called the nurse station to have them check Denise. Once again today, she had the same attentive caretakers she had yesterday, and they were right on the problem. Anyway, the sensation that Denise had was something new to her, and very scary. She was afraid that it might stop her from speaking, breathing, or stop her heart. She was scared she was going to die, and asked if such talk was worrying me. I told her that she could talk about whatever she wanted, that the bulk of my worrying was in previous weeks & months, and that she's sick, but has a long way to go before being dead. "OK, good" was her response. Then she immediately commented that the food at the hospital was really pretty good, and that it was a shame that she wasn't able to eat much of it. I told her that when she gets well, I'd take her on a date to the hospital's cafeteria. Eyes rolled. Things are getting back to normal. Yay!
Soon thereafter, iv fluids, some ativan, and some morphine (she had considerable pain from both the bedsore and her ab) were administered. Instead of dinner, she had to drink barium, and was scheduled for a CT scan of the abdomen & pelvis around 8pm tonight. She fell asleep way before that time. I tried to be as much comfort as possible to her this afternoon & evening. She thought I did OK, and the nurses didn't seem to mind that I was on hand. I just try to help where I can and otherwise shut up & stay out of the way.

Her stats today included a normal temperature, heart rate upper 80s & low 90s, blood pressure 100-110 systolic, WBC good, hemoglobin 10.9, hematocrit 33.8, liver numbers normal with the exception of high alkaline phosphatase (512... down from the 700 when she arrived at Huntington a few days ago). The echocardiogram from Saturday showed an ejection fraction of 60. Music to my ears. Lungs sound good, too.

All in all, there were some disappointments & panics, but also some progress in the stats toward normal. After the rapid progress and major milestones of the past three or four weeks, things seem to be slowing here and there.

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Fever crept up, but so did Denise's spirits, Kids visit

Fever going up a bit. She was at 101 tonight for the first time since leaving USC. We don't like to see that. She feels pretty good in spite of that, though. They're taking blood & urine samples for testing. Other stats include a BP of 120/88, heart rate of 110, and administration of coumadin, coreg & lanoxin (digoxin) for the heart, plus the usual antifungal & antibiotic meds. She had a much better day today than yesterday. Still minimal therapy, being a weekend. Here nurse team today went way above & beyond, taking care of Denise plus four other patients while also taking up the slack while the therapists were on light duty for the weekend. Denise said she felt sorry for the nurses, likening them to a parent having to take care of five different babies, each in a different room. The kids got to visit mommy in her "new home" today for a while. Jacob is still not too snuggly, but was an easy laugher while Denise was playing with him. Gracie was all about snuggling, though. One of the nurses custom-taylored Gracie's gown so that it was the pefect length, and said she looked like Cinderella. Gracie liked that comment. I drove back & forth a few times to visit, and we talked up a storm for a few hours. She had her moments of pain & frustration, but we were getting pretty good at getting comfy. I've had a few months to learn a few tricks about tugging sheets & tucking pillows, and Denise is getting stronger and more able to pull herself to the side, or sit forward on her own. She said she thought I should be a nurse or a doctor, as she thought I could zero in on what she needed fairly quickly. Yesterday Denise had pain & redness at the site of the g-tube. Today the doctor adjusted something, and the pain subsided. Also yesterday, she got to wheel around the halls much more than she did the day before. She didn't remember that until today.

A correction to Thursday's post: I mentioned that at one point Denise's blood pressured jumped up. That was according to what she told me. Today the nurse said that the pressure dropped instead, to 80/60. Workable, but not as good as it's been lately. However, it did go back up again. My hope is that the cuff wasn't tight enough, or was off-center and gave a false reading. Through it all, Denise still maintains that she didn't feel much worse than usual; she was more concerned with trying to use that bedpan with an audience.

Yesterday I became aware of a sudden loss in the lives of two of Denise's caretakers from Arcadia Methodist that lost a teenage daughter recently. I know the feeling of losing a highly-anticipated baby, and of anticipating the loss of a spouse of 8 years. I can only imagine the devastation of losing the daughter into whom they have poured their all for 19 years.

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"Miserable" day, Weekend visiting, Rosebud Parade

Denise felt like she was having a miserable day today. On the heels of yesterday, that's the way it would seem. Yesterday she had about four hours of therapy. Today she only had about an hour & a half, but we were expecting to have four to six hours, just based on the trend since she arrived. Apparently weekends are much lighter. Even though the patient to nurse ratio is 5 to 1, there were so many people coming to work with Denise yesterday that if she needed something, someone could take care of it. Because there were so few therapy sessions today, there were fewer people around and it took much longer for someone to get to her, so she felt helpless & frustrated. One of her college buddies that has a disability came to visit yesterday and today. Denise wasn't particularly "encouragable" today, but she did feel better to talk with someone that really has an idea of what she's going through.

Weekend Visits:
One productinve thing that came out of today was that we know what to expect on weekends now. Since there will apparently be very little therapy on weekends, visitors are welcome during the hospital's visiting hours (I believe 10am-8pm). There's free parking on Saturdays & Sundays in the La Vina lot from Pasadena Ave (the closest lot to Denise's room).

We went to participate in the Pasadena Rosebud Parade this morning with the kids. They decked their wagons out with real and paper flowers & flags. Jacob was pulling his flowers off almost as fast as we could put them on. It's the first time we ever did it, and it was tons of fun. Denise's parents, my dad, and one of Denise's college buddies enjoyed the morning with us. The kids even got a picture with the Rose Queen and the court that will be in the Rose Parade in a few more weeks.

I have a page magnifier for Denise! Thanks for the tips on where to find them. Hopefully it'll do the trick for her.

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Took 5 steps, Rolled wheelchair, Loves rehab

Denise has already made a tremendous amount of progress in the rehab facility, and she loves her therapists. Yesterday she only had two hours total of physical & occupational therapy. Today they had four or five hours, from what I could see from the schedule. She took 5 steps with assistance in a walker, got to go outside in a wheelchair, rolled the chair down her hallway all by herself, bathed herself while sitting up at the edge of the bed, and she darn near turned herself on her side by grabbing the rail.
I cheated on the visiting hours and was there for some of the therapy (at Denise's invitation... but I still tried to stay out of the way). I am impressed by what I heard... the therapists are upbeat, personable, and related to Denise in ways that I'm sure made her feel like she was calling the shots whenever possible. She's making the transition from feeling like everyone has to take care of her to feeling like she can start doing for herself now. Like I mentioned in yesterday's post, it's a very different ballgame in rehab, compared to the "regular" hospital. She still has the medical attention, but she doesn't feel nearly as helpless.
She called me in the morning so I could bring her some clothes from home. Of course I brought stuff that doesn't match, but that's because I'm a guy. The therapists said that they've never had a husband get the wardrobe right yet. I fit right in! But for the first time in months, she wore something besides a hospital gown (or *an* hospital gown, if you prefer). My mom went on a shopping trip to get Denise some comfy clothes to wear. Part of her therapy is dressing herself. The OT said that she won't have Denise doing many exercises... she'll get a muscle workout just doing real-world tasks, like getting dressed. Anyway, it reminded me of one day at Arcadia Methodist when she couldn't talk, but indicated she wanted to shop for new clothes, because she hated the pattern on the gown.
I forgot to mention yesterday that the dressing on her tracheostomy has been removed. She just has a little dimple in her throat that needs to heal up. Also last night, I received calls from doctors to discuss Denise's history so far. I was sitting at the computer most of the time, looking up info to answer their questions. During last night's shift change, she needed attention, but dropped her call button. So she phoned me to ask if I could call the nurse's station and request that someone drop in on her. As for today, there was a 2-D echocardiogram (I don't know if that's any different than any of her other echoes). I wasn't on hand for any vitals, but she looked, sounded, and acted stronger than yesterday. Must have been the new clothes making her happy.

Request:
I'm trying to find a page magnifier for Denise... the kind that's a Fresnel lens that you can just lay on a page. Not a round magnifying glass with a handle. I've not been able to find one. Anybody know where I can get one?

Shameless Plug:
I signed the kids up to be in the Rosebud Parade tomorrow morning. Kids decorate their wagons, trikes, strollers, or whatever, and then go parading up & down a stretch of Lake Avenue in Pasadena. An added bonus is that the 2006 Rose Parade Queen will be there, and she happens to be a former student of mine. I taught her everything she knows about poise and tact, and I'm very proud of her. If you're interested, here's the info:
Saturday Nov. 12
Decorating begins 8am,
Parade begins 10am
South Lake Ave. in Pasadena, between Granite & Del Mar (across from the Macy's). No parking on the street during the parade, but you can park behind the stores on the east side of Lake Avenue.

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Huntington Visiting Information, Phone Number

Denise is now at Huntington Hospital in Pasadena.

• Room 4124 in the La Vina building (best parking lot is off of Pasadena Ave.)
• Phone number is 626-535-6458 directly to her room.
• Visiting hours M-F are 3pm-8pm.
• Visiting hours Sat & Sun will be decided when she finds out more about rehab schedule.
• She'd like to eat dinner alone (served 5pm-ish).

Denise has requested no visitors tomorrow (Friday Nov. 11), as she'd like to get to know her new surroundings and meet everybody that she'll be working with. Visiting hours were set by her, based on her desire to have her therapy sessions consist of only her and her therapists. Again, don't feel offended... she even told one of the prayer moms that was planning on coming today that their visit should be postponed (and Denise was asking for them). She felt that if people visit during therapy or meals, she'd feel compelled to make small talk, or feel self-conscious, causing her to lose focus on the tasks at hand. Eating is something she has to concentrate on doing for now. She also wanted to batch her visitors in one time window instead of having people in all during the day.

You can send an email to her room from the hospital's web site... be sure to put "Denise Williams" in the subject line. There's a link at the top of the "Links" section of the blog. I will still check her pullingfordenise@yahoo.com email, but if you could go through the hospital's site instead, that'd be one less thing for me to do.

Denise happily signed her own signature on the transfer papers this morning. We had a bit of a detour once we left USC (ambulance driver got on I-5 south instead of north... whoops!), but she got there. As the ambulance was backing into the parking space, we saw her USC doctor (who's also associated with Huntington) through the back window. I think he cloned himself... he's always at USC and now at Huntington, too. He lives & breathes hospital. When he came to Denise's room to get the rehab doctor up to speed, we mentioned that we saw him from the amblulance as we arrived. He joked, "I was wondering who was trying to back over me."

She's elated about starting rehab and is jumping right in, making friends with her nurses & therapists. We have a neighbor whose relative was at this facility for a few months last year, and the neighbor said that all the nurses & therapists were wonderful. I saw plenty of evidence to support that today. The rehab mindset is different... now I understand why it was decided that rehab would be better than a "regular" hospital for Denise. She has much more control & freedom in this setting, and I could see the positive effects on her morale after just a few hours. She's excited that people can bring things from "the outside," that she can wear sweats, shorts, jammies or a nightgown instead of a hospital gown, that she can put on makeup if she wants to... the list goes on. Encouraged by the recent permission & encouragement to set down guidelines for how she wanted things to be, she stopped to apologize for sounding so "determined" about everything. Notta problem. It's about time for her to get some control of her life back. I thought back to the book about suffering I read, in which it stated that we can help suffering people feel better by giving them control of some aspects of their lives. I'm seeing how therapeutic that concept is.

As for the medical stuff today, heart rate was 88, temperature 97.6 (oral strip thermometer), and blood pressure 110/60. There was a time today when her gut was really working overtime, she was huring, and the BP went up higher. She had to use the bedpan, but four doctors were checking on her. That kind of anxiety would my blood pressure go up, too. It came back down to normal again. While her USC doctor was giving the rehab doctor Denise's info, he mentioned that the lumbar puncture did reveal antibodies or antigens (sorry... don't remember which word) for cocci (valley fever). That's what we anticipted, as an ID doctor at USC said that there was a mold growing from that sample. I also overheard that the MRI revealed that the cocci was probably in the brain at some time. During the first couple days at USC, the ID doctor said that cocci NOT being in her brain was the ace up our collective sleeve. I would need to search back through the blog, but I recall hearing that an earlier MRI showed signs consistent with possibility of cocci. That may have foreshadowed what I heard today. The doctor pointed out yesterday that we almost lost her because of the cocci. Bearing that in mind, and looking at where she's at today, I can't begin fathom how much hard work and how many miracles have been poured into her.

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Moving to Huntington Hospital 7am Thursday

I found out tonight that Denise is scheduled to transfer from USC University Hospital to Huntington Hospital at 7 am Thursday morning. I can ride in the transport with her. She's looking forward to the ride, as she says she doesn't remember the last one at all. When Gracie heard about the ambulance ride, she got excited & said she wanted to go, too. I spent a long day with Denise today, anticipating a possible move that didn't happen. We talked about everything under the sun, and it was both wonderful and difficult. One of the respiratory therapists came by to say goodbye, and that was a tear-jerker moment.
Somewhere along the way in our journey, I think I remember someone saying that every day in the hospital adds three or four days to the stay in rehab. With that in mind, Denise is eager to leave this hospital and get into the rehab program at the next hospital. She said she's good with going to Huntington, feels more comfortable that they have the "acute care safety net," and she wouldn't be disappointed if she never goes to the resort-like atmosphere of Casa Colina. Her goal is to get home, not get to Casa Colina. That pretty much puts it in perspective, and tells you what's important to Denise. Besides, she said that if she's going to go to a place that looks like a spa, she'd rather take a trip to Palm Springs when she's healthy. Her doctor again today said that he'd like to get her home for Christmas. This is the next milestone in pushing for that target.

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Rehab plan: Huntington, then Casa Colina

Here's a picture of Denise & Gracie during a recent visit. Look at that smile on Gracie's face!
Now for the latest in the rehab saga, as of this evening... Looks like she'll transfer to Huntington Hospital in Pasadena for a while, then to Casa Colina when she's ready. The doctors and case managers all felt that a good step for Denise would be to get out of an acute hospital setting and into a setting where rehab takes the center stage. But Denise is still sick, and until some current health issues are fully resolved, they want to make sure that acute care is down the hall, instead of an ambulance drive away to another hospital. Casa Colina is our first choice for rehab, but would not be able to provide the specialists that Denise does still need, nor is it focused on providing care in the event of a crisis. Huntington is a leader in the area for acute care, but their rehab facilities aren't as new or well-equipped as Casa Colina. I asked about the possibility of checking into acute rehab at Arcadia Methodist, but Denise's medical group doesn't contract with them for rehab. I asked about just staying at USC until the health issues resolve, and go to Casa Colina from there. Denise loves her USC therapists, and the USC rehab workout room is better-equipped than Huntington's. The glitch is that she'd still be in an acute care facility, and the main focus still isn't rehab. So when it's all said & done, as stated above, the compromise of going to Huntington first and then Casa Colina is the best workable option.
We're disappointed that she doesn't get to enjoy the resort-like atmosphere & sparkly new equipment at Casa Colina (yet). But some time at Huntington certainly does offer some very big benefits. It offers the acute care that she hopefully won't need. Better safe than sorry. Her current doctor from USC is also on staff at Huntington. Denise really likes him (he makes funny remarks as he pops in to check on her, and thats lifted her spirits many times). It'll be nice to have the consistency of him being involved at Huntington if needed for an acute situation. There will be a new doctor overseeing her at Huntington, and he's also on staff at Casa Colina. Three hospitals, only two doctors doing the handoffs... could be a lot worse. Huntington is an easier drive than USC. Visiting hours are more flexible than at Casa Colina. Best of all, several parents from my school work at Huntington. If you're one of them, stop by to cheer her on, and please put in a good word to the rehab staff to take extra special care of my sweetie!

So here's your prayer concern cheat-sheet:
- pseudomonas present again
- fevers low, but still present
- liver numbers normal, sometimes high
- ascites (ab swelling) due to liver function or protein deficiency
- throwing up once in a while
- I'm getting a slight tickle in the throat & ear. Getting sick?
Good news:
- ejection fraction is up to 45%
- I found a driver to return that casserole dish to Huntington Beach
- now when the hospital calls, it's about progress instead of crisis.
- rehab is on the horizon!

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First Visit to the Workout Room

She took her first trip to the workout room! Her dad & I cheered her on. I got to wheel her there & back. Today was the first time I've ever pushed her in a wheelchair. She gave her all and toughed out the pain. With some help, she stood for about two minutes. Among the exercises she was doing, my favorite was with the Cybex Kinetron II. It's like a Stairmaster, but you can sit down while doing the workout. Her PT was trying to get her to press down on the foot paddles but she couldn't do it. Another PT that was sitting off to the side with us said, "Denise, there are bugs on the floor! You've got to step on them!" Denise still couldn't get the paddles to move and joked, "I guess there'll just have to be bugs on the floor, then." A minute later, she got them moving, and even did an extra set of reps just because she's so motivated to get stronger. One of the PTs said that Denise would be getting her muscles back, and Denise replied that she also needs some flab on her butt, because it hurts to sit, it's so boney.

Her doctor told her that she'd be ready to roll out to the rehab facility tonight or tomorrow. But I also talked to her case manager that would coordinate the move. She felt that as long as Denise had some "red flag" issues (fever, throwing up sometimes, ascites, question over liver labs), she didn't know that Casa Colina would be best for Denise, since it might not have the level of acute care that Denise might still need. I don't know much about medical things, but I do know that acute care is necessary when you have a cute wife. Duh. Moving right along... the case manager threw out the possibility of moving Denise to the rehab facility at Huntington Hospital in Pasadena, thereby having a balance of rehab and acute care availability. I just checked their web site, and all I see is outpatient rehab. I'm going to call the case manager, Huntington, and Casa Colina first thing in the morning to try to get all my questions answered. A facility that's between where we live & where I work would be ideal for me & the kids, so the thought of having Denise at a hospital that's about 5 minutes from where I work put a smile on my face... I was imagining all the possibilities for visiting, working, improved commute, maybe even getting the kids from a daycare to a preschool setting part of the day. In the end, though, it's all about what's best for Denise. We can't wait for her to get to a rehab environment, get stronger, and get home. But we don't want her to move until everyone's sure that she's good & ready.

Ending thoughts:
I've got a casserole dish that needs a ride from Duarte to Huntington Beach. If you're up for the trip, let me know.
In fact, I've got a couple dishes that have been sitting on my counter for weeks, and one or two don't have names on them. So if you blessed us with food help and didn't get your dish back, please contact me.

About seven weeks ago, a counter was added to the bottom of the blog web site. Over 21,000 hits since then (over 400 each day!). That probably doesn't count people on the mailing list that never even have to visit the blog site. Denise is well-known around the world, it seems. And as one of her emails said, even more well-known in heaven. Cool!

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Pointers for Calling & Visiting Denise

Since Denise has been doing so much better during these last three weeks, many of you have asked about visiting her. She'd love it! Here are some pointers for the remainder of the time that she's at USC University Hospital:

• Denise requests that calls & visits fall between 10am and 8pm. I usually call ahead to see if she'll be available and feeling up for a visit.
  
• A short phone call is a great alternative to a visit, as you'll save on drive time, gas, and parking. The phone number to her floor is (323) 442-8780. Ask for Denise Williams in room 753.
  
• You can also email Denise to let her know that you care: pullingfordenise@yahoo.com
• She sounds a little "out of it" at times, and there are still a couple hoses & bandages here & there. That makes some people uncomfortable. But she's got all her marbles, and she's still Denise even with the needles & tubes. Just talk to her like you always did; you don't have to use overly simplistic language, yell to be heard, whisper to keep her calm, or get close to her face to be seen. She's tired of always having to look up at people, with a blank ceiling as a backdrop for your face. So pull up a chair if you can. If you're really short, you'll probably be a favorite!
  
• If you arrive and she's sleeping, please let her rest. Sit in the waiting room for about 20 minutes and check back. She will probably be awake again.
• She said she's not lonely, so don't feel like you have to stay long to keep her company. Short and long visits are both OK with her. Even if you can only stay for 10 minutes on your lunch break or on the way home from work, she appreciates that you took the time out of your day for her.
  
• During your calls & visits, ask her if she'd like to rest. She's said that she's had to play hostess sometimes, when she'd rather be left alone to rest. When you bring up that option to her, that relieves her of the burden of having to end the visit if she's tired. Please don't be offended.Sometimes she's had me leave after just a few minutes, and s he said that she'd rather have me there than anyone (Whew! I was getting jealous of her asking for my aunt, dad, and the "prayer moms"!). :O)
  

The hospital address is 1500 San Pablo St. Los Angeles, CA 90033. This is NOT the same as the older "County/USC" hospital building. I feel bad for a couple of you that went to the wrong place! So here are directions:
10 freeway
Soto Street exit, go north
Left at Alcazar
Left at San Pablo
Left into big driveway, around the fountain, into the parking structure.

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Rolled herself along in a wheelchair

Denise got to take another wheelchair ride today, and rolled herself along in the lobby. It was only for a few feet, and it exhausted her, but she did it. Her parents & a couple friends from Coalinga also took her to the chapel, and went to a park that's adjacent to the hospital. Those trips are great for her morale. Today she got an IV inserted. I don't believe this is a PICC line this time. My thinking is that PICC lines are designed to stay in for a while. Admittedly, I'm probably reading too much into it, but my thinking is that maybe they're not anticipating her staying much longer at all. Still no work on the echocardiogram, vision, or when she might be moved out to the rehab facility. Her voice sounds stronger and more normal each day.
Tonight she was tired. A couple of her college buddies called in to see about a visit, but she told them that she was already exhausted... all visited out for the day (well... she *did* put up with a visit from me later). The kids only saw her for a little bit tonight, which worked out well. It allowed Denise & I some alone time. She wanted hugs, hugs, and more hugs. Right on! She was bringing up some things she remembered about her hospital stay. Some things really happened (for example, she remembered touching the faces of nurses, and getting her toenails painted). Other things were dreams or hallucinations from a few weeks ago. I'm interested in finding out what else she remembers as time goes on. She started crying, too. She wasn't sad, she said... just felt like crying a little. After what she's been through, she's got every right to do so. During last night's visit, Jacob reached out for Denise so hard that he almost squirmed out of my arms. But tonight he wasn't into the visit when he arrived. He had an accident that resulted in a fat lip during a trip to the Kidspace Museum with Denise's parents today. So he wasn't feeling too great about anything. Gracie did well, but got too hot wearing the mask. The kids had balloon animals from having dinner with Denise's folks at Twohey's restaurant (an area institution). Gracie's kitty cat had one cheek blow up, so that caused some grief later that night. I told her that I could do some balloon animals. She asked if I could fix the cat's cheek. That got me to thinking. Perhaps I'll run over to the party supply store this week, get some balloon animal balloons, and try to make a spare cheek part for a balloon cat. Such is my life.

Some things I forgot to mention this week... I'm forgetting things & wearing down, I guess.
Last Sunday: I was treated to a much-needed massage. The guy that did it has a 20-year-old son with cerebral palsy. The massage was great for starting to work the kinks out of my neck & back that have been building up over the last 3 1/2 months. But hearing him talk about how their son's been a blessing was just as good for the spirits as the kneading was for the muscles & joints. Things haven't always been positive, of course. But I found myself thinking that if this guy could get through 20 years of living with a loved one that's physically not up to snuff, and see plenty of blessings during that time, I should be able to get through a couple more months without falling apart.
Last Week: The chaplain gave us a book called "Safe In The Arms of God" to read together. It'll come in handy for when we're ready to start dealing with the loss of the baby. The chaplain commented that he liked this blog idea, so I set one up for him so he can keep his supporters updated on his ministry. He's a neat guy, so Denise loved his many visits and hopes to keep tabs on what he's up to once she's done at USC. I'm thinking of getting a license plate frame for her that says "USC Alumni" when this is all over.
Friday: I went to the memorial service for the teacher from my school that I mentioned in the blog a while ago. It was a packed house. Among the many speakers was her husband. All of us were glued to his every word, but I just about couldn't listen to him when he talked about her last moments before going for her surgery, the recovery, then the realization that she'd had a stroke, her inability to communicate and the helplessness that everyone felt. It brought up too much that was running through my head during our bleakest days these last few months, including how I'd handle my wife's funeral if it came to that point (I don't think I could talk). I'd say he's a pretty strong guy. But being close to where he is now, I'm confident that he'd say something similar to what I've said: "It ain't me that's strong... it's He that is in me."

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Asking questions, Rehab field trip,

Yesterday when my dad was visiting, Denise asked lots of questions about losing the baby (he was on hand with me for that ordeal). Today she asked me questions about what happened to her during the time that she was sedated. Part of what I told her was that a few times during the months that she was at Arcadia Methodist, everyone thought we were about to lose her, but her doctor & the team were able to help pull her back every time. Just for the record, her doctor at USC said that she was probably just ready to get better at the time of the transfer, so he was going to get out of her way & let her do it. I think he's selling himself short, because she's getting better by massive leaps & bounds. Anyway, it was hard for her to digest the gravity of her situation. I haven't wanted to talk about these things with her just yet, because I don't want to stress her out. But she's starting to ask, so we're letting her take the lead in finding out how much she wants to know, and when. When I visited again tonight, she cried (she thought it was the first time, but I've seen tears before) as I was reading her emails. She couldn't understand why the outpouring of support, especially from people that she doesn't know (yet!). She said she was just being sick, not trying to do or able to do anything... how could she be any kind of witness? She said that she's just been numb to everything; not mourning or really thinking about losing a few months of the year. I guess that yesterday & today would be markers that things are starting to hit her.

Yesterday morning I took a field trip with Denise's parents and my aunt the nurse to Casa Colina, the rehab facility. I can hardly wait until Denise goes there. It's lacking very little, and there's a ton to like about it. It looks brand spanking new. I thought it looked like a fancy hotel inside. The grounds are landscaped, and every room has a view of one of the courtyards. It's got a great reputation (emails from some of you attest to this), and I'm confident that a better place with a more intensive regimen would be hard to find. When she starts there, she'll have to think of it as a job. Breakfast, then physical & occupational therapy all morning. Lunch. More PT & OT in the afternoon. Even though the patient-to-nurse ratio is less than what it is now, it won't matter... add the PTs & OTs into the mix, and she'll seldom be left alone. Finally, between 4 & 8pm, visitors are allowed. 8pm seemed kind of early to cut off visiting hours, but she'll probably be even more exhausted than she is now from all the work (and she's nodding off by 8 or 8:30 already). They have a cafeteria that looks like a nice restaurant, and one of the reps at the hospital said that patients are encouraged to eat meals there. We're looking forward to finally having Mommy back at the dinner table with us!
I asked about helping with the rehab therapy. I found out that for Denise to concentrate on her "job," it's preferred that we not be involved until it's closer to discharge time (and that'll be soon, right, everyone?). When I thought about that, it made sense... if I'm working out, it would be distracting to have someone watching me. Anyway, it looks like they won't need my help during the day, nor would (or should) I be allowed to visit, as that would in effect "interrupt Denise at work." Bittersweet, though. The faster she can get out of the hospital and into the rehab facility, the better. I'd love for the visiting hours to be closer to what they are currently. But Denise needs to be allowed to "get to work." I found myself saying yesterday, "It's about Denise getting rehab, not visiting." I should make a little sign to remind myself.
Speaking of Denise getting to work, I've got to get back to work myself one of these days. I've used up all my sick days and am now going through days donated by the people I work with. There isn't enough paper to write all the thank you notes I'd like to write to the people I work with (teachers, staff, etc.) and work for (admin, board, families, etc.). It seems there isn't enough time, either (I owe lots of people outside of work a lot of thank you notes, too). I guess I'm a little sick in the head, but I actually do like working at my school. I've felt bad about being gone for so many weeks, and all the related issues that a school has to deal with in a long-term absence. I called our HR person the other day to start talking about "what next." She said that they were working up some possibilities. Perfect timing, made even more perfect by the anticipated move to rehab and their posted visiting hours & policies. I'm encouraged by the way that I see things starting to mesh together. At the same time, I am a bit intimidated by the looming challenge of stepping up to the plate at work, maintaining optimal normalcy & security for Gracie & Jacob, taking care of myself, and doing so in a way that fits within the 4pm-8pm visiting time with Denise. Pray for me, my family, and my school on this one. Again, encouraged, but biting my nails.

I almost forgot the stats & such for the med-heads that are rooting for Denise. Tonight I will blatantly plagiarize an email that my nurse aunt Jackie sent me. She came up to visit for a couple days. Denise told me today that she wishes Jackie could be her nurse all the time. Anywho, the following refers to yesterday, Friday Nov 4:

Temp went to 100.7 so blood cultures done times 2, Urine analysis and 
culture and PICC line was removed (no IV access at the time). She was 
started on an antibiotic Levaquin. Her temp at 4pm was 98.4
Her liver enzymes are normal (AST 29, ALT 40),CBC was normal (WBC 
8.2,HB 10.2, HCT 30.5,Plt 359,000), Her protein is low (Albumin 2.5 
norm 3.2-5) kidney function normal (creatinine 0.3). PTT was 49.6 - too 
high so her anticoagulation meds lovenox was held and coumadin was 
being decided weather or not to hold. BP 104/63 HR 103.
She vomited after breakfast. She complained of nausea today. Fleets.
Her feeding tube was to be connected only 8pm 
to 6am at 60cc per hour.
She was connected up at about 9 pm.
The wound therapist changed her wound dressing and vac in the 
evening. No one on staff was able to get her up for the evening meal 
but Denise and I were able to position her comfortably enough in bed 
to visit with the kids and eat only a little something.  I 
stayed to be sure we got her comfortable back down and on her side in 
the middle of the bed.
A cardiologist saw her for a few moments just before 9pm.

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Heart looking better, Jacob said "Hi Mom."

Tonight when I took the kids to visit, Jacob said, "Hi mom." Not bad for a little guy that's not even 19 months old yet. He sat on Denise's lap for quite a while without squirming, and he seemed to be more comfortable with her than yesterday. I remember asking you for prayer on this point a few nights ago. It's working! Keep it up! Gracie was her usual happy self. Denise's doctor walked by and saw Gracie in the room visiting Denise. He could tell that she was eating this up. She loves wearing the gown & gloves. A couple months ago, she wanted to be a nurse. Last night she said she wants to be a doctor instead. Denise's dinner included a glass of red wine tonight. That really surprised me. I didn't think you could get wine in a hospital. My mom, dad, and nurse aunt were on hand to help with the kids. Once again, Denise wanted to sing with my dad, and selected "It Is Well With My Soul." The last time they sang, they did "Amazing Grace" & "I'll Fly Away." Every day, when I speak to her over the phone or in person, I can hear that her voice is getting stronger and getting back to normal.
She had an echocardiogram today. The tech doing the procedure said that her heart looked better, judging from what she could see on the screen. The results are going to be interpreted by the cardiologist. Her ejection fraction last time was thought to be about 30-35, and that was a huge leap from 10 a few weeks before. Let's hope the trend continues. Her vitals at one point today were: heart: 103, blood pressure: 105/61, temperature: 100.9.
Tomorrow there's a tour planned of the rehab center that Denise is supposed to go to next. She was excited to hear that someone told us that there's a warm pool and a cool pool. She's looking forward to the next step. At the same time, she's scared of the pain & time that rehab will take. I was trying to encourage her by reading through some emails & pointing out how far she's come. She said that she can't believe that it's approaching four months that she's been in the hospital. She hears everyone saying how far she's come, but doesn't remember any of it, and so doesn't feel like she has anything with which to compare her current discomfort & frustration. So in addition to the physical healing that you've already been praying for, pour it on for the emotional & spiritual aspects, too.

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Wheelchair ride, Went outside, Wasabi toothpaste

Denise got in the wheelchair today! They just rolled her along with her tree full of meds. Not only did she get a wheelchair ride, she also got to go outside. This is only the second time she's been outside since she went into the hospital on July 18. The only other time she's been outside was when she was transferred from Arcadia Methodist. There's an entire team to thank for this milestone... doctors, nurses, therapists, techs... Here we have Denise with some physical & occupational therapists. I mentioned weeks ago that I'd love to name names and give credit where it's due, but there's probably some privacy & liability issues with doing that. Usually we have to wear the gown, mask & gloves when we visit Denise in her room. But rather than make everyone else suit up, they just gave her the mask & gloves. You might remember that even before she could speak, she was writing "wheelchair." She got her wish.

I didn't get any stats on Denise today. But looking at her and listening to her voice, she's getting stronger. They had to change out the vacuum sponge thingie today. They have a really cool squirt gun for cleaning the bedsore out. It looks like something that Marvin Martian would use. But as nifty as it is, she was still in pain during that procedure. She said that getting into the wheelchair was the best thing that happened today. But she's discouraged by how much time she's missed at home with the kids, and it's hard to stay strong and have a positive attitude when she can't move, can't get comfortable, can't use the restroom, can't brush her hair to cover the bald spot that's developed. I told her that Jacob & I would shave our heads in solidarity if that made her feel any better about her head, and pointed out that he's already standing firm with her on the restroom issue. When I brought up the kids, she said that seeing them tonight was better than getting into the wheelchair. Tonight was the first time that Gracie sat on Denise's lap in about 3 1/2 months. Jacob smiled & laughed while Denise tickled him. He's gradually coming around.

A funny thing happened with the kids today that I didn't have the heart to tell Denise. Well, I thought it was funny, and she'll probably think it was horrible. I'm confident the fathers will be on my side, the mothers on Denise's. After breakfast, I heard Jacob screaming in the bathroom. It was the red alert scream, not the simple angry/frustrated scream. When I got to the bathroom, I didn't see blood or missing teeth, but I did see a small tube of wasabi on the sink, right by the tube of their bubblegum toothpaste. Gracie said that when I was putting things back into the fridge after breakfast, she saw a "little green tube of toothpaste that's Jakie-sized, and he wants it because it's not purple toothpaste." Being the helpful big sister that she is, she put a little toothpaste on her toothbrush, a little wasabi on Jake's toothbrush. I think it was a refreshing twist on the classic toothpaste-Preparation H mixup.

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Casa Colina on deck, 4 liter paracentesis

I spoke with Denise's case manager today and she also said that a move to an acute rehab facility is planned in about a week's time. Casa Colina in Pomona CA is the anticipated venue. I've heard good reviews so far. They just revamped the facility in March of this year. I'd be interested in your input if you know anything about this place. Denise is both excited and scared. She hopes they have a pool for her to use. She used to be a lifeguard and was on swimming teams, so she swims better than I do. But I cannonball and dawdle about in the water infinitely better than she does. Along PT lines, she stood for a little while today and told me that they might let her get into a wheelchair. Indeed, I saw one in her room!
Her paracentesis yielded about 4 liters of fluid (15 days since last paracentesis). The last one was October 17 and yielded about 2 liters (10 days after the previous draw). Up until today, there was less fluid being drawn, given the number of days since the last paracentesis. Could be infection, protein deficiency, or a couple other things causing the fluid buildup. The fact that her fevers continue to be fairly normal, spiking in the low 100s, makes me hopeful that the infections are not the cause. Her heart rate is slightly above 100, blood pressure 110-120 systolic. Things seem to continue the gradual return to normalcy.
The kids got to visit again today, and this time Jacob started warming up to Denise much quicker. Though he wasn't being a cuddle bug, he was smiling and flailing his arms, and at the end of the visit, pointed & said "Mommy!" from outside her room. So we're getting there. This morning Gracie was playing with dolls, pretending that the dollhouse was the hospital. She received the dollhouse for her birthday last year, and loved it. We "rotate" toys (store them for a while, then bring them out to play with again) so the kids don't get tired of their toys as fast. Gracie liked her dollhouse, but was a little too young & rough for it... she kept trying to stand on it, it has lots of breakable hinges & small parts, so we put it up in the garage a few months ago. I brought it back down today. When she saw it in the living room this morning, she was just as excited as if it were Christmas, saying things like, "Oh boy! Is it for me?" I told her that it was, and asked if she'd ever seen it before. She said she hadn't. I just thought that was kind of funny. But I wonder how long the kids will fall for us rotating the toys in & out of service.

I forgot to mention last night that Denise wanted my dad to sing. He sings bass and loves belting out southern gospel tunes. Denise enjoys singing but her throat was sore. I prefer not to inflict my attempts to sing upon others. So they tried a few songs together. I hummed. Quietly.
Another thing I forgot to mention is a neat thing that happened. Both our cars were due to be smogged, and I was going to post a request for help doing that over the weekend. Then BOOM, a friend called and said he wanted to help us, but didn't know what to do. I gave him the idea of smogging the cars for us. Not only did he take care of those tasks (saving us time & money), but he also took care of putting in a new trunk light & radio display light. Now I can see the junk in my trunk and see what station I'm trying to tune in. I'm blessed to be so well-supported on so many fronts, with perfect timing!

Finally, thanks for all the emails to Denise. Everything sent to pullingfordenise@yahoo.com is printed out on nifty paper and I read it to her. It's not likely that you'll get a response... that email address is primarily just a means for you to encourage Denise. She loves the encouragement. Our biggest laugh today was from somebody knows of a dog that's getting acupuncture to treat valley fever. Our favorite short & sweet bit of bumper sticker wisdom was "If He takes you to it, He will take you through it." I think we'll start telling ourselves that a few times each day. Someone wrote "Psalm 40" on Denise's whiteboard in her room. So we looked it up. Perfect reading for how she's feeling. Thanks to whoever wrote that up there.

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Transfer to rehab facility? Solid food, Bible - large print

I crossed paths with Denise's doctor last night (after 9pm... I swear that the guy lives at the hospital!). He told me that he talked to someone from our insurance about getting Denise out to a rehab place. I asked how long we were talking about... a month or what? He said a week or so! I at once couldn't believe it, and found it reasonable to expect, given the tremendous strides she's made during the last two weeks. I remember that while Denise was at Methodist, there was talk about moving her out. Due to some of her needs, not just any long term acute care facility (LTAC) would work. She needed to go to a place that also specialized in getting her off the ventilator, and I believe that the feeding tube may have been a sticky wicket as well. Our needs & desires are to find an excellent place that's going to meet her needs (rehab... not just a place where people are parked) and that the place is as close to home as possible. And throw in prayers for continued speedier-than-usual progress so that we can, as the doctor hoped, get mommy home for Christmas.

She had to fast yesterday morning, there were no vomiting episodes, and she even got to order solid food meals from the hospital menu beginning yesterday afternoon. She told her parents that she was "concentrating" on eating & swallowing carefully because she didn't want to gag & throw up. That would probably bring her back to square one. Temperatures have been within normal, spiking in the 100 range. Today she's got a paracentesis scheduled to draw fluid off the abdomen. She wanted a KJV Bible to read, but her vision was too blurry to see normal print. My dad brought a giant print Bible for her, and Denise tried using different glasses for reading. By the way, it's from Thru the Bible and has J. Vernon McGee's signature on the presentation line. Thru the Bible just posted the entire 5-year Bible study program in MP3 format, as well as notes & outlines. Click here to download.

Last night we took the kids to visit with some of Gracie's preschool friends from last year. They dressed up & went trick-or-treating at a couple houses in the neighborhood (thanks for letting us crash your party!). After that, Gracie got to visit Denise again, and show off her costume (princess). Jacob (Superman) was already asleep, so we didn't take him. That's just as well, because half the time last night, our little Superman was strutting around in foofey pink princess heels. Pray not only that Jacob outgrows that tendency by junior high, but also that he quickly begins to recognize Denise. Denise doesn't look the same as he remembers, so he's a little slow to warm up. That's pretty rough on all of us. Now that the kids have been given the OK to visit, Denise & I have the goal of bringing the kids for a visit every day. Visits from the kids have been good medicine.

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