Mixed bag, Writing, Jake's vist, David Hasselhoff

Mixed bag between yesterday afternoon and tonight.
I had to start back at work today for teacher orientation. While I was there, the nurse called and said that Denise wanted to see Gracie & Jacob, the staff arranged a visit, and Denise got to see both kids. The kids had a big morning at the park with Denise's dad, and Jacob was a little tired & clingy to grandpa. Gracie was wide awake and gave Denise about a million kisses. Unfortunately, I didn't make it for the visit, but I hope to be there for the next one. And again, many thanks to everyone that dabbled with the rules and allowed the kids to visit.
Yesterday Denise went from PRVC vent mode to CPAP, in which she gets to call the shots as far as how often to take a breath, and how deeply. That lasted 5 hours. Not bad. They tried it again today, but she was only able to go for about an hour. Yesterday her oxygen concentration was only 30%; today I saw it as high as 60%. Late yesterday afternoon, she was able to write fairly legibly for the first time in over a month. When she got too tired to write (couldn't complete the sentence), she rediscovered how to use the TV remote (well on her way to becoming either an author or a vidiot).
Unfortunately, yesterday's indium scan didn't reveal anything helpful to us in the fight. That was disappointing, as I thought that it might shed some light on what's going on to cause the ab swelling & fevers. Today they gave her a bunch of contrast and did a CT scan to see if they could find anything. Her heart rate was also in the 150 range much of the day today, so they gave her some more sedative and morphine in addition to cranking up the oxygen to try make her relax.
While I was getting caught up on Denise's condition at the nurse's desk, there was a "code blue." When I saw everyone run toward Denise's room, my heart sank, thinking it was for her, but it was for the patient in the next room over, in a corner room. Fortunately, they were able to revive that patient.
And today's bit of frivolity: I parked by David Hasselhoff. He was getting to his car as I was getting out of mine. I've actually seen him there several times over the last few weeks, but I don't think I've mentioned it before in the blog. The first few times I saw him, I thought he looked familiar (school parent, someone from church, old high school teacher...), then a nurse reminded me that he was on Knight Rider and I made the connection. Anyway, I guess his folks are fairly local and his mom's been in ICU. Even though he drives a nicer car than me (well, who doesn't?), the waiting room for ICU/CCU is a great equalizer... no distinctions due to fame, race, money, college degree, or much of anything else. Everybody's in the same boat: worried about, weeping over & praying for a loved one. I guess I only mention this now because I'm re-reading "Where Is God When It Hurts?" and that point about waiting rooms and death both being equalizers came up in what I read today. Anyway, he seems like a nice enough guy, but no, I won't pester him for an autograph for you.

Nerve conduction normal, vent weaning beginning

I just got a call from the doctor with mostly good news. Here's the good stuff:
No sedative for over 24 hours; she's really awake & alert this morning. Any time she's asleep it's just that: she's exhausted & sleeping. They're changing her over to a vent mode that allows her do more breathing on her own, so I guess the weaning process will officially begin later today. The neurologist's opinion is that Denise's nerve conduction is normal, and her muscle strength should come back after extensive rehab (but at least there's no damage detected, and we can chalk up one more miracle). The extreme muscle weakness is perceived as being due to meds, breaking down muscle for protein since she can't absorb protein through the gut, and maybe just completing six weeks in the hospital.
The concerns:
They tagged her blood cells yesterday and should perform the scan today to find where the mystery infection is located. Still vomiting, dealing with colitis (and the goodies that go along with that). Some electrolyte imbalances, nutritional problems, frustration at inability to move, speak, use the restroom, etc. I need to fall asleep (sleep aids knock me out for way too long). And of course, there's a long, long time away from home & family ahead of us.
Thank you, family, friends, professionals, prayer warriors, and happy thought thugs... I'm glad you're all in our corner!

Active day, Gracie got to visit mommy

Denise had no sedative at all today, and was very active. She ran the daytime nurse ragged in the morning. They had her in the cardiac chair again (Denise, not the nurse), and she tried her best to stand up in it, pushing against the foot plate. During the time I was home for dinner, she tried pulling herself out of bed, so they had to strap her down. She has a belt around her torso and cuffs on her wrists with tie-downs attached (she can't stay away from that pesky breathing hose into her throat).
We got permission to take Gracie into Denise's room this afternoon. She wore her custom-built nurse's cap, brought her toy doctor kit, and behaved with a great deal of maturity. Denise was pretty tired, but lit up when she saw Gracie (Gracie lit up, too). We were able to let Gracie sit on the bed, where she stroked Denise, listened to her heart, pretended to give her an injection, looked at books with mommy, and even got to snack on cookies & juice that one of the stafflings brought in. Quite a few nurses came in to watch the reunion. I took video of the visit, and Gracie & Jacob wanted to watch it over & over at home. Truly one of the best days we've had in the last six weeks. The rules at the hospital CCU say that nobody under 10 years old can come in. Many thanks to the nurses that magically turned the rules into mere suggestions for us today.

Indium scan on deck

Yesterday was fairly mellow. Denise was sedated or asleep most of the time and we didn't interact much. I did a lot of reading. Last night she finally started to wake up and asked about the baby. I told her the usual response "Don't worry... he's doing perfect, very well taken care of." She indicated that she wanted me to leave her and go visit the baby.
The doctor called earlier this morning with the latest. Fevers are still high and they don't know why. So they're going to do an Indium scan. They will take some of her white blood cells, tag them with Indium (radioactive), put the cells back in her, and the cells will accumulate at the site of infection. They can then scan her body and find where all the white cells are hanging out. Then a proper course of action can be determined.
She's back on IV feeding (TPN); feeding through the gastro tube has been halted for a while. Between the protein/nutrition problems and vomit problems, IV feeding seems to be a better bet for now.
Chest x-rays have been showing some more improvement. As far as the vent, the oxygen concentration has been between 28 & 35, PEEP set to 5. When she's not stressed & anxious, her breathing rate is in the mid-teens. There's talk of making changes in the coming days to begin allowing her to assume more of the work of breathing on her own.
There seem to be no indications anymore of DIC (that weird clotting problem). The concerns of SPT (septic pelvic thromboflibitis) are also fading, however she's still on preventative doses of Lovenox.
Blood cultures for all infections (cocci, pseudomonas aeruginosa, c. dif) have been coming back negative the last 3 times and the latest paracentesis also came back negative (yay!). But she still has to be on the meds for a while to wallop the infections (like when you're on antibiotics, the bottle says to take all the pills until they're gone, even though you don't have the symptoms anymore). For those that like to hear the play-by-play, she's on Diflucan for the valley fever (cocci), Flaggyl, Vancomycin, and Xifaxan (rifazimin) for the c. dif, and Amicacin and Zyvox (linezolid) for the pseudomonas. Throw that stuff in a Martini glass with an olive, because it sounds like quite a cocktail, doesn't it?

Kidspace Museum, anyone?

I've heard lots about the Kidspace museum in Pasadena, and I'd like to send the kids. If you have a family pass and you'd be willing to take the kids, please contact me. Gracie's going to be 4 in October, Jacob is about 17 months. You can use our van if seating is a concern.
In fact, if you have a family pass to anyplace and you'd like to include my kids on your family field trip, let me know (thank you to the families that have taken them to the library for story time, park, zoo, aquarium, and Huntington Library... they love those places!).

Biting, frustration, cardiac chair, video, dad update

I almost got bit today (well, yesterday, since it's now the wee hours of Sunday morning). Denise kept pulling the tracheostomy hose off. She was about to do it agiain and as I was prying her fingers off, she tried biting my fingers. She put up a pretty good fight, too. She's really angry with having to be in bed, having all the tubes, not being able to use the restroom, unable to speak, too uncoordinated to write (though her scribbles are getting finer). She's pretty loopy much of the time, so it's always like the first time, having to tell her about all these hoses, how long she's been in the hospital, etc. I had to tell her that if she kept popping the hose off, she'd get sedated or tied down (and then she'd really get mad).
The absorption of nutrition continues to be problematic. She's thrown up a few times over the last few days (nothing aspirated). As far as meds, there's been a change from Primaxin to Flaggyl (to try & nail the colitis). Amicacin is also on deck or already started (I can't remember for what, though... I'll have to ask again).
Denise was moved into a special chair for about 45 minutes today... a "cardiac" chair or a "stroke" chair. Her bed back raises and feet lower, but apparently not to the extent of today's chair (which can lay flat at the same level as the bed for moving a patient). I wasn't there for that, but my guess is that she appreciated the change of position.
I've been showing Denise footage of the kids on a camcorder. She loves that. I also showed the kids some positive footage of Denise in the hospital (awake, smiling, able to wave & make kissy lips for the kids). They wanted to watch it over & over.
Earlier Gracie said she wants to be a nurse. Word got out that I tried to get her a nurse's cap from the gift shop, but they don't have any. So someone from another part of the hospital made some caps out of card stock for Gracie to wear until the real cap that I ordered comes in the mail. Gracie's been using her toy doctor kit to check us all, including her dolls, and Chloe the dog. Gracie tried putting the sphygmomanometer on Chloe's tail a while back, but it was wagging too much.
An update on my dad... My dad's been dealing a recurrance of cancer (colon, liver, lung, lymph) since last November (sorry to those of you that didn't get Christmas cards from us last year, by the way). His inclination was that he'd rather live six month without chemo and feel OK most of the time than string along for two years with chemo and feel too lousy to do anything he likes. My dad just came back from a Southern Gospel quartet convention in South Carolina (he visited the area of Tennessee that Denise & I were looking at, too). He had a great time. At the most recent oncology appointment, the doctor suggested that he do another series of chemo treatments so he stands a chance of going to the convention again next year. Those of you that know him will not be suprised that this line of reasoning helped to persuade him in his decision to follow the doctor's suggestion.

Sedated vs. Alert, Mirror, Sneakers

Been a rough couple days since the last post. Denise has had some more sedative a couple times, and when she starts coming out of the stupors, she's still asking about the baby & we're reliving the bad news over & over. At this point, I just show her the picture of her holding Danny & say, "Don't worry... he's being very well taken care of right now." I'm a little discouraged, because I kind of thought we'd be beyond all this after bringing her to full-throttle alert and telling her about the baby a couple days ago.
The more Denise becomes alert, the more uncomfortable and aggitated she gets. Yes, it's good that at least she's well enough to be awake sometimes & be able to know she's miserable. But I don't like seeing it. I'm also having to explain the tubes & hoses once or twice each day. I finally brought her an unbreakable mirror (a baby toy) so she could see herself. Her eyes teared up and I reassured her that she's getting better and stronger, and eventually all the hoses will be gone. On the light side, she'd complained over the years that as she gets older, her jawline gets broader like her dad's (who has no neck whatsoever... he's built like a fire plug). So I reminded her of that gripe, and said that she doesn't have that problem right now. She raised her eyebrows & nodded.
The gastro doctor called to say that Denise's isn't tolerating the tube feeding very well. Today they did a third paracentesis and drew off about a liter (the previous one drew 1.7 liters... think of that... almost a 2-liter bottle). They're going to test the fluid for infection. Speaking of infection, my last post stated that we're dealing with only cocci and clostridium difficile (c. dif). I forgot to mention the pseudomonas aeruginosa. The cocci (Valley Fever) didn't show up anymore, but there are still those other two infections that are causing quite a bit of trouble. And we can add vancomycin to the current arsenal of meds. Same story with raging fevers, colitis/diarrhea (eew!), nutrition problems (especially protein... she looks to me like she's pretty bony lately), and need of transfusions (to those offering, they say there's not much point in directed donations if she's not scheduled for a surgery), and a few other things that I can't even think of.
On the positive side, she got her hair done, legs shaved, feet pampered, and some other nice things yesterday, courtesy of the nurses. She really liked that. She also has an unlikely medical apparatus: classic Converse Chuck Taylor high-top sneakers, black (trivia: that's what I and the groomsmen wore to our wedding). They were needed to prevent ankle problems, and the inflating boots they had were too big.

Movie Note: Parking yesterday was a royal pain in the bohonkus during the movie shoot. Denise's dad saw a stunt double for Tom Cruise get out of a car & jump over some shrubs. Funny, I thought Scientology might enable Tom Cruise to do that, too. Oh well. For those of you that plan to see Mission Impossible 3, the Arcadia Methodist hospital will have "Virginia Regional Hospital" on the doorway and parking lot banners, and the sign for the building will say "McGrath Medical Tower" (in real life it's the Nor & Fran Berger Tower). That's the entry way that we rolled Denise through 5 1/2 weeks ago when this nightmare started.

Valley Fever Whipped? Hug! Mission Impossible 3

Topping off today's post is a public service announcement. If you're signed up to receive the email version of these updates (see link to the right if you haven't already signed up), please don't respond to those updates if you want to write back to me. They go back to my cousin that set up the emailing capability, and then he has to forward everything to me. Instead, either click on the COMMENTS link under each post or send an email to me at the email address in the box at the top of this page.

Much more good than bad news today!

THE GOOD: Latest tests for the presence of cocci (the Valley Fever fungus) came back empty. So it looks like that infection may finally be whipped. I assume they will keep her on the meds & do another culture or two in the future, just to be sure. The only other confirmed infection that we're currently dealing with is clostridium difficile, which has been detected in the stools (those of you sitting in chairs need not worry, I guess). I got the impression that it is something that can be dealt with and is not life-threatening at this point, as Denise is in no danger of dehydration. If I understood correctly, the only things she's currently taking for the infections are Amphotericin B and Fluconazole. The fancy ventilator that Denise was on has done all it can for her... she's been changed over to a more conventional vent mode (PRVC) on a different ventilator and so far is doing OK. This evening I was told by the respiratory therapist that today's arterial blood gas workup was perfect (essentially normal, as in a reasonably healthy person). The chest x-rays have improved. We can focus on rehabilitation and weaning from the ventilator. It's not currently thought that she has septic pelvic thromboflibitis (SPT). The fluid & ab swelling is most likely from lack of protein (think of what we've seen with starving children in Africa) rather than SPT. Someone from the Los Angeles County Health Department paid a visit to our house today. What's dealing with a government entity doing here among the good news? The rep was very, very nice. We were trying to pin down specific dates & places in relation to contracting the Valley Fever. The financial counsellor at the hospital said that it looks like we're covered 100% (Whew!).
My favorite thing: I got a hug! Denise flopped her arm over the side of the bed and was trying to hang onto me. I asked if she was trying to get a hug & she nodded. Pretty awkward with all the hoses & wires, but I was happy!

THE BAD: A couple of blood transfusions (while the blood gas was good, the blood composition is still very low in hemoglobin). Same colitis. Same massive protein requirements. More coughing than usual (it gets the crud up & out of her lungs, but it's really uncomfy for her). And of course, we still have months to go in the hospital.

On a side note, a movie scene will be filmed at the hospital overnight. They have palm trees in the parking lot, but the movie crew tied pine trees to them (a worker said the hospital is supposed to look like it's in Maryland). They also covered the hospital's sign at the car dropoff with a fake sign (I didn't see the name... it's covered). A volunteer told me that the movie is Mission Impossible 3 (hardcore fans of the TV series may be wondering why I didn't include this news of this movie sequel with the "bad news" paragraph above).
A nurse indicated that Tom Cruise would be there.
Filming starts at 4am Thursday.
Shhhh... don't tell anyone.

Denise knows about losing the baby

Yesterday afternoon we told Denise that we lost baby Daniel. Denise was fully awake/aware, was definitely asking about the pregnancy & baby, and was getting mad that everyone was giving her evasive answers (some of these great nurses would also make great politicians). The ObGyn explained what happened to Denise while I, Denise's mom, and a chaplain were there. Denise did better than I did. I've been worrying about Denise's health so much during the past weeks that it was almost as bad as my first time hearing the news. Denise started to cry and heave her chest, but she mostly coughed and set off the alarms on the ventilator. The ObGyn also told made sure to tell Denise that Denise didn't do anything wrong; she made the best choices possible for herself and the baby. But at a point when it came down to Denise or the baby, her body went into spontaneous labor, and losing the baby was a bittersweet event that added to Denise's survival thus far.
Everyone left us alone, and I asked Denise if she wanted to see the pictures of the footprints, the and pictures of us holding Daniel all bundled up (we have some other pictures that are more somber that I don't really want to see again for a long time, much less show to Denise right now). I put her glasses on and she looked at those couple of pictures for probably 10 minutes. I wiped away lots of tears for her, as well as myself. She wanted them taped up on her bed rail with the pictures of the rest of the kids, so I did that. She also wanted to hear everything I could think of relating to the birth & everything else. So I told here everything I could think of. I have some good news relating to the worry I had about deciding casket vs. cremation without Denise's input. I explained that it was a tough decision to make, but since we didn't know how long Denise would be in the hospital, I thought it best to do a cremation and decide what to do later when she gets home after we pick up his ashes from the mortuary. She was OK with what I'd decided, and indicated that she'd like to bury his ashes along with the planting of a tree, more than scattering at sea. So now I have the relief of not having to keep losing the baby from Denise, and knowing that I made an acceptable call with the cremation (insert sigh of relief here). After that, our pastor from church came in and read two perfect verses for the situation and prayed with us (I wanted to post the verses, but can't find where I wrote them... I'll try to remember to post them later). Since yesterday, I've seen Denise looking at the pictures frequently, and many times I've let her know that she brought 3 beautiful babies into the world. She cried the first few times, nodded the next few times, and today she smiled, nodded, and raised her eyebrows. We know he's being taken care of better than we could take care of him, and we'll see him later on when we're done here.
Obliquely related theological thoughts: One of the first conversations we got into before we started dating was trying to figure out any biblical preferences toward or against whole body burial or cremation (weird pre-dating conversation, I know). In the end, Denise kind of thought the casket would be nice, based on most Bible references to whole body burial, but didn't feel any strong pull either way. I leaned toward cremation, but if somebody wanted to shell out more than I'd spend to embalm me & pay more for a casket than I'd pay for any car I'll ever own, it wouldn't matter to me. I sort of felt that these things were our final futile attempts at vanity & status symbols. However if Yugo built a casket, I'd think that'd be pretty funny to be buried in one of those, as opposed to a more reliable and well-appointed casket, say one with the Eddie Bauer trim package (you laugh and think, "How silly," but we do it with cars & baby strollers all the time, don't we?). Anyway, Denise & I both agreed that the end results were the same... absent from the body & present with the Lord, it's all going to decompose eventually, God'll figure out a way to restore & raise it all up again, and He probably doesn't need our help, whether we attempt to delay the decomposition process or speed it along.
Thanks for pulling for us through the medical concerns and the emotional concerns. I know that most of you that have been following along share the same worldview we do (all you "Prayer Warriors") and many don't (our friends coined the term "Good Thought Thugs" and "Happy Thoughters" for all you wonderful people). Either way, I've felt and appreciated all your support all through this ordeal. Your prayers & thoughts especially manifested themselves yesterday when we told Denise what happened. It went much better than I'd envisioned, and we've felt more peace, and faster, than I'd thought possible. There's still sorrow when we look at the pictures of Danny boy, but somehow it's not as bad. I really can't explain it. Truly, we're experiencing the "peace that passes understanding."

Error AGAIN... Ativan, not Avastin

It was just brought to my attention that in the post made earlier today, I stated that Denise's sedative was Avastin. It's Ativan. I made this mistake earlier in my August 11 post, to which I posted an error alert as well.
(Denise *did* receive some Avastin a few days back, but to help boost her red cells).
Ah, the joys of being mildy dyslexic! Good thing I'm not giving Denise her meds, huh? Guess I could never be a nurse.
:O)

5 weeks in, memory better, asking about baby

Things have been progressing slow for the last couple days. Overall, her breathing continues to get better, her blood, nutrient absorption, infection & high fevers continue to be in the limelight as concerns.
Denise looks very frail... bony hands, tiny wrists, etc. Not chewing & talking make her cheek bones very pronounced, cheeks sunken in & jaw line not as square. In spite of that, she's still giving it all she's got when she's alert, moving her legs & arms. Yesterday I think she was able to bend her knees on her own a tiny bit, and she was able to raise her arms at the elbows with great effort. She even accidentally batted the tracheostomy tube and it popped off for a second.
There was another change in antibiotic, as one of her infections (pseudomonas something or other) was resistant to it. They started Amikacin. She has mild DIC (disseminated intravascular coagulation), related to infection. It's a weird condition that I haven't researched enough to understand. But for the time being, I *think* it's a situation in which blood coagulates within the circulatory system (not at a wound), and uses up coagulants & platelets. She also has disproportionately low count of lymphocytes, which are part of white blood cells. 20% should be normal, she's been 15% on a good day, 5% on a bad day.
She had the best blood gas results yet (encouraging). Yesterday she was about as alert & active (and aggitated & anxious) as she's been since waking up. She could remember most people in photos and last night's nurse said she's definitely asking about the baby. Denise is only taking sedative (Avastin... with an "i" is the official hospital spelling) as needed, in small amounts to mellow out, not get knocked out.
We finished reading "Purpose Driven Life" the other day, which we started the day before Denise started feeling sick (40 days). Today marks the end of 5 weeks in the hospital. So on we go into week 6. And off I go to the hospital. Thanks for caring, all!

Coping, Amnesia, Blessings Counted, Music

Today has been fairly uneventful, as far as major news goes. Transfusion, antibiotic switch (Vancomycin to Tobramycin), physical & occupational therapy (Denise has expressed that she likes to move). There might be another organism found in the fluid from the paracentis (a gram-negative bacilli possibly). As usual, there is a waiting game involved with the cultures. I should have asked if this might be the same organism that was found from the swab that the ObGyn did a while back, in which they found p. aeruginosa, but I forgot. I remember from bio way back that a bacilli is a rod-shaped bacteria, and I read that p. aeruginosa is gram-negative (can anyone explain "gram-negative" within the 300-word limit of a comment?). No word on the CT scan for neuropathy causes yet. Still have the usual infections, fevers, weakness, blood concerns, ab swelling, etc.

I talked to someone that gave me an idea of helping the kids cope. I was already going to get video of the kids to show to Denise. It was suggested that I take video of Denise while she's very alert & can smile & be expressive facially (have this happy footage at the beginning of the tape, and at the end). Also get video of her sleeping. Show the room so that Gracie can see the pictures on the walls that she made. Show the bed (Gracie was comfortable with pushing buttons on the bed when Denise was in a "regular" room). Even get video of nurses taking blood pressure, using the stethoscope, and doing other "regular" procedures that Gracie is familiar with (Gracie has a Fisher Price doctor kit with these items, and she uses them all the time). I can show these things to the kids to reassure them that mommy's still OK ("OK" being relative, of course).

Today, the temporary amnesia that can result from the sedative (Atavan) really hit home. Again, she mouthed that she wanted me to take her home. Again I explained that she's been in the hospital for 4 weeks and has Valley Fever, not Rocky Mountain Spotted Fever (she DOES remember coming into the hospital), she's got chest tubes, feeding tube, tracheostomy, etc. etc. etc. ad nauseum (ad nauseum, for those of you that don't know latin, means "getting sick of seeing the same commercials over & over). She had a look of disbelief on her face. She didn't remember visitors from yesterday. I took photos off of the wall and asked if she recognized the people in the pictures. In many cases, she did not. Fortunately, she recognizes me. That's encouraging, since she'll pucker up for a kiss. Don't want her doing that for just any guy, you see.

Denise's regular doctor (the one that just became a daddy) indicated that he would be less involved. I met another doctor this evening that has been following Denise's case. He showed me the chest x-rays and pointed out the improvement between August 2 and today. Lungs are still bad, but much better than they were. He stated that earlier in this ordeal, nobody expected Denise to survive with the ARDS (Advanced Respiratory Distress Syndrome... the critical lung issue a couple weeks ago) that bad, on top of the other vital organs shutting down (remember she was going into septic shock and they gave her Xigris to combat the sepsis). He also said that he could think of one other person that was in the state that Denise was in that survived, and that was about 15 years ago. Hearing these things made me count my blessings again!

In addition to reading to Denise, I've been playing music she likes, too. She's usually been asleep for that. Today was the first time she wanted to hear music while alert. We played a whole bunch of songs on the iPod. Some highlights: She started rolling her head side-to-side, just about in time with Fleetwood Mac's "Hold Me." During "Teach Your Children Well" by Crosby, Stills, Nash & Young she smiled & turned her head to look at a family picture taped on the bed rail, raising her eyebrows a couple times. "I've Got To Walk That Lonesome Road" by the Stamps has a part where the bass singer dips *really* low, and at that part Denise made the same face she always makes at that part ("Did that sound come from a person or a whale?"). My favorite moment: During Cyndi Lauper's "Girls Just Wanna Have Fun" she was moving her legs and shrugging her shoulders, shaking the bed so much that a portable oxygen tank was rattling in the bracket. That's pretty fitting for her, I think.

2 days of news, and jury duty

Today was our one-month anniversary for this ordeal. Denise went into the hospital the 18th of July. Sorry for not posting yesterday, and posting so late today. Here's the scoop:

Yesterday: CT scan of abdominal area & pelvis, with contrast. Contrast... I guess it's like paint or something so the organs show up better. Denise is an artist at heart, so I hope she appreciated the contrast. Anyway, that showed lots of fluid buildup around bowels. The question is: why? Also, they drew blood to do some blood cultures. I learned that they have regular tubes for adult blood samples. And they have child-sized tubes as well. They've been using those pediatric-sized tubes for Denise all along, because they don't want to take much blood from her if they can help it. Fever crept up to 103.4. She vomited yesterday. Nothing was aspirated, though. The vent mode that had been serving her so well (bilevel) was down to a very low level of help (40% oxygen concentration, 0 PEEP, 18 cm/H20 pressure, for those that will ask) and they tried switching over to a different mode called CPAP. I rushed home. I looked it up. I learned a lot. But then Denise started doing poorly in that mode, so they switched her back to bilevel again. Oh well, at least they thought she might be far enough along to try.
Yesterday she was asleep most of the time. When she was awake, she was sort of catatonic... eyes open, mouth open staring at the ceiling. But then between about 3 & 6 pm, she became more alert. At one point the nurses washed her hair & braided it, then tilted her bed up & feet down (like a recliner... this bed is so cool!). They were joking about how it's almost like going to a spa or salon, and Denise seemed to be getting a kick out of that. I had to leave to get home for dinner with the kids and she did big puckery kissy lips, so as to lure me back for another smooch. I fell for it, easy. When I got home, there was a jury duty letter for Denise in the mail. I had to have the doctor fill out the form to be excused. I *did* hesitate, though... given some of the verdicts we've seen over the years (Blake, Jackson, and let's not forget "The Juice"), I started to think that maybe, just maybe, Denise was exactly the type of juror they were looking for to sit on the next big celebrity case. Anyway, the doctor wrote in that her condition will remain for 6 months, she'll be well enough to serve on a jury in 8 months. The other stuff that the doctor filled in on the form is completely illegible (can someone please post a comment that explains why this seems to be a common trait among doctors?).

Today: As is typical, some things get better, some get worse. High fevers (they're lowering the heparin to see if the fevers will get knocked down). Brutal Valley Fever infection still going on, plus the p. aeruginosa, and some other fungus that's yet to be identified. We were really hoping to not find any more nasty things to deal with.
Electrolytes are doing zany things due to the meds, so that requires a balancing act.
For those asking, albumin is at 2 (should be 4). It's "a protien made in the liver that assists in maintaining blood volume in the arteries and veins. If albumin drops to very low levels, fluid may leak into tissues from the blood vessels, resulting in edema or swelling."
Hemo went down to 7, so she got another transfusion (she has developed what they call "minor antibodies"). But white count went up to 15 (neupogen stopped) and platelets went up to 108. Really, somebody should assign ticker symbols to these things... I *am* watching them closer than any stocks right now.
There will be another paracentesis today or tomorrow. There was also a CT scan of the head and some other neurological tests to try & find out why her nerve conduction is so weak. Which leads me to the next topic...
When Denise is alert, she can move neck, face, mouth, and shake her legs some... that's about it. She's *very* weak. Can't give a thumbs-up or wiggle fingers. So they need to find out if it's caused by the steroid & other drugs, or from "Critical Care Neuropathy." When we find out results from the CT scan, then I'll know where to even begin asking questions about getting her strength & movement back.
On the good side, they again lowered her vent pressure (down to 15), still has 40% oxygen, still maintianing about 97% saturation. Cookies and gift certificates to In-n-Out Burger appeared in Denise's room (THANK YOU!). And we finished "To Kill A Mockingbird" tonight. If you've never read this great story, now I've got a copy you can borrow. I was thinking of bringing in some books that Denise hasn't had time to read and let her pick what to hear next. One of the nurses said I should bring in a romance novel & read it, and the nurses could hang around the room and listen in. Maybe I'll buy a great big Fabio poster to put up in the CCU instead.

Less Vent, Less Critical

This morning's news is short & sweet. Denise's dad & I went in at about 9 am to watch the physical therapy. Denise did pretty good. We learned a lot of things that we can do with her. Much of the work was passive, but some was active, requiring Denise to apply a little force on her own. She was *really* tired when therapy was done. Not that she's ever really been a morning person, but she was already starting to fade in & out by 10 am. I still got a smile, though! :O)
The ventilator pressure went from yesterday's 20 cm/H20 to 18 today. So once again, here's another day with the machine doing less work, Denise doing more, and her oxygenation remaining adequate.
The doctor indicated that they're going to discontinue the med that boosts white blood cell production, as her marrow seemed to start cranking out acceptable amounts again. Yay!
There's another increase needed in the protein department. The fevers persist. Infections persist.
Ray of sunshine: doctor indicated that if things continue to slowly get better, Denise may be graded into a category that's less critical or even just plain serious. When patients are in serious condition, they don't really like to hear jokes. That'll be a tough phase for me. Still, I'm glad to hear that all the decisions, meds, skill, equipment, hard work, and prayer is all working together to keep Denise on the road to recovery. After all that's been going on for a month, it's nice to hear the positive things.
By the way, Denise's doctor became a first-time daddy yesterday. He's "off" for a few days to hang out with his wife & new son. But he's still been coming in to see Denise anyway. That kind of dedication has been typical of him and the nursing crew.
:O) Phil

Physical Therapy Starting, Less Vent Pressure

I didn't hear from the doctor until very late today. This is good. Usually, the earlier I hear something, the worse things are. OR I may have heard from him late today because he just became a daddy this morning. One of the nurses said she thought she saw him early this morning. Then his wife had a baby. Then he called to touch base with me later in the day. Wow. That's dedication.
Things are fairly stable today. The same problems are still being problematic. She needed another unit of blood to get the hemoglobin count back to acceptable levels. Still battling colitis & infections. Still needing ultra-high amounts of protein. Still very, very sick.
But on the good side, a physical therapist started Denise's first session today. This will be no surprise to those of you that know Denise's love of dancing, but her strongest movements (really the only movements) were in the legs & feet.
The vent pressure was lowered a little bit more. So Denise is doing the work of breathing a little bit more on her own and still maintaining decent oxygenation.
The ascites looked to me like it was going down a little. Then again, it's hard to notice the change. Kind of like watching grass grow.
Denise liked hearing the emails read to her today. They don't get printed out on the weekends. There's an avalanche of them on Mondays. They put smiles on her face. They're weak smiles, but that's the best she can manage right now. Thanks so much for them! Keep them coming! Thanks also for the emails sent to our home account & for the phone calls, too. While I'm not as good as I usually am at responding, know that I'm getting them all and being encouraged.
:O) Phil

Error Aug. 11: Ativan, not Avastin

There was an error on the August 11 entry, which stated that the sedative was Avastin. That is incorrect. The sedative is Atavan or Ativan (I've found both spellings). Avastin was on my mind because my dad was on it for cancer treatment, and all these drugs are starting to sound the same. I received a couple email from alarmed nurse-types that knew the difference. Thanks for bringing this to my attention.

Breathing better, Blood worse, Reading Lips

The doctor just called with the usual good news/bad news/neutral news update.
Denise's lung mechanics are going well enough that they're going to turn down the vent pressure and let her assume more of the work in breathing. The holes in the lungs have closed up. Chest tubes will stay in for the time being, however.
Last night she was responding fairly quickly to news of how long she'd been sedated, what the date was, and much of what has happened. She expressed disbelief. Can't remember a thing. Good.
A therapist will be coming to start working on muscle movements. She's very weak from the severe sepsis and the meds. The neurologist will also be coming in to do some more evaluations.
Her fevers haven't spiked beyond 102 for the past 24 hours. As mentioned numerous times, some part of the fever is her fighting infection, some part is brought on by the meds (I believe Abelcet or Albecet, used to fight the cocci fungal valley fever). That med also causes problems with potassium and magnesium. During this whole crisis, I've often wished that I took chemistry instead of physics throughout school.
An anti-clotting med is going in (Lovenox) to treat the SPT mentioned on Thursday.
Blood numbers have drifted downward. Hemoglobin count is down to 6.8. Earlier I mentioned that 7 is currently the limit if oxygenation isn't an issue (and that's been going well). There have been issues with her creating antibodies to the blood from other people, so they don't want to do too many transfusions. White count is 1.7 (normal would be 8, they say). So they're starting her on a drug to boost that (Neupogen). Denise & my dad have that in common now. For those that don't know, my dad's been dealing with cancer in colon, liver, lung, and lymph since November... indeed, I thought I'd be sitting by *his* hospital bed by now, not by Denise's.
They are also treating Denise for colitis (inflammation of the colon). The situation was described as having tons of antibiotics killing almost everything off. But the really resistant bugs are just having a big party in the colon. I imagine that this is how the phrase "party pooper" originated. But I digress...
I was encouraged to hear the doctor tell me that overall, she's better now than she was a week ago. So I'm off to the hospital to visit with her. At this point, let me toss up a small prayer request for me. I've got to learn to read lips FAST. She's too weak to write anything, and may be lacking in the fine motor skills department at this time, anyway. It was tough to see her completely sedated. I don't know if it's much better to see her awake but unable for us to communicate so I can understand her needs. The most frequent things are pain/discomfort and thirst. But she's trying to say a whole lot more to me that I can't understand. Some of the biggest arguments we'd get into over the years were over me doing something but not stopping to look at her when she talked. Don't get me wrong, we'd focus on each other most of the time, but when I didn't actually look at her, I fully understood what she said and certainly was listening. It's just that I interacted with her while still carrying on with whatever else I was already doing. Computer guy that I am, I tried to explain to her that I was just "multitasking." She wasn't amused (men, your wives aren't amused, either). Right now, I wish I'd watched her so I could get practice at reading lips. Any of you adept at ASL and lip reading, let me know some pointers.

p.aeruginosa found

The culture from the fluid draw they did the other day (paracentesis is what it's called) showed nothing of concern so far (let's hope it stays that way). But the swab that the ObGyn did showed growth of the p. aeruginosa bacteria. The "p" stands for "pseudomonas." The "p" also stands for "pretty darn resistant to antibiotics." Apparently there's currently only one antibiotic (Primaxin) that can lick this bacteria, so they'll try that. I just now looked it up and saw that it's got Imipenem as a component. I remember that name because I already joked in an earlier post that Denise likes Stan Getz doing "Girl from Ipanema" and Denise had become the "Girl on Imipenem." Why it was apparently tried before and we still have this infection to deal with, I don't understand. Then again, I don't understand most of the work they do in the CCU. By the way, television E.R. has nothing on the CCU.
I'm waiting to get more info on the SPT (mentioned Thursday August 9) that we may be dealing with as well.
Fevers tickled 104 again last night (hadn't gotten that high in a couple days), and were down around 99 by the time I left earlier this afternoon.
Blood workup is still not great, but stable. My understanding is that additional transfusions could be counterproductive to fighting the infection(s). So they're giving Denise iron instead of red cells to help with the oxygenation.
They also stopped the SoluMedrol steroid drip. Apparently it works against one of the antibiotics. Since the steroid was primarily given to reduce inflammation in the lung to improve oxygenation, and the new ventilator is taking up that slack in accomplishing that end, they felt it was the wisest move to discontinue the steroid for now. That'll give the meds the best chances to hammer the infections.
The Tygacil was also stopped, as it apparently doesn't combat what was anticipated to be the problem.

Denise's overnight nurse went to Pasadena Christian School from kindergarten through 8th grade, graduating in the year that I started teaching there (1994-1995). All the old PCS teachers reading this can be proud of Michelle Gower. She took real good care of my wife.

Yesterday, Denise was waking up again, and I was reading all of the emails to her that were received that day. One of them was from one of Denise's friends. The email described a dream in which our friend saw Denise well and happy. I read that aloud and then related a dream I had a few weeks ago in which I was a kid, walking down the school hallway, and everyone was laughing and pointing at me. When I sat down in my desk and got my books out, I realized that I had forgotten to put on all my clothes and was only wearing my underpants. Denise opened her eyelids, rolled her eyes, and shook her head a little. Without moving her lips, she said, "Honey, you're a buffoon." For this, I was happy.
Needless to say, I hope that our friend's dream comes to pass, and mine does not.

New lung hole, more sedation, infection concerns

Well, Denise has indeed developed another pneumothorax (lung hole) according to the x-rays. It's smaller than the first one, but they still had to sedate her again to put in another lung tube to allow the air & fluid to drain. So she's sleeping again. Still, yesterday was a nice bit of encouragement!
The doctor told me that there was something found in the fluid taken from the pelvic region yesterday. The standard bacteria/virus/fungus waiting game still applies: gotta wait 48-72 hours for cultures. Preliminary word is that it might be something that's pretty resistant, though I didn't get the specific name. Hopefully, the infectious disease doctor will have spoken to Denise's main doctor by the time I get back to the hospital and I can report to you all what she might be dealing with later tonight.
I haven't heard anything about Denise's blood workup today. I assume that it might be stable (but still bad and cause for concern, treatment, and of course, a whole lotta prayer.
Oh, yesterday I said the brand-spankin' new antibiotic that they were trying with Denise was Tygracil. I accidentally added an "r" that didn't belong. The stuff is Tygacil. Still pretty new, though, approved just June 15th.
Denise is going to be moved to a room with a view later tonight. It's still in the CCU. They want to start to get her on a schedule... "awake" during the day, sleeping at night. One change is that even family will have to clear out by 10pm or so. As much as we've loved having someone there for her 24 by 7 for a few weeks, this should be a good thing. Denise won't be tempted to stay awake in the middle of the night if one of us is there. And the rest of us will get some much-needed sleep (and we'll finally be on a schedule as well). I know I'll be making fewer 1am stops at In-n-Out Burger. As hard as it might be, this will help us take one more step toward normalcy. Speaking of visits, I should probably state again that they really only want family visiting for a while. If you show up to visit without one of us with you, or without me calling ahead to clear you, they will likely politely turn you away. That said, we're all humbled by how many of you have come by to visit. She's well-loved, as evidenced by the many cards, entries in the guest book, and goodies left for her in the room.

Thanks for so many suggestions via email for how to handle any questions about losing baby Danny. The O.B. thought it best to wait until Denise is fully awake before discussing this, as we don't want to traumatize her repeateldy through the amnesia caused by the sedative. Just once would be better. Last night she sort of pulled my hand to her tummy and hit my hand against it. I explained that she had a bunch of new tubes, including one to her stomach, and there was a bunch of swelling, so things don't feel right. I need some wisdom, people. Hard to figure out what to tell the kids and Denise to keep the trauma to a minimum.

On a *very* positive note, I was thinking this morning of how good I have it when it comes to where I live. Last night, one of Gracie's toys fell and broke the only phone jack in the house that we can use with our DSL modem for internet access (to my partners in geekiness who will ask... we've got a weird/special setup... none of the other jacks will work). Anyway, I've got a neighbor that does electrical stuff. Turns out he does phone stuff, too. And at odd hours of the night. Thanks to him, we can do this update today. Another neighbor brought dinner unannounced on just the perfect night. I can't remember what day it is, and another neighbor knows that, as evidenced by my trash cans always being by the curb when they need to be. The lawn is not only not dead, it's been mown & edged a few times. We were treated to some fine black cherry ice cream, deliverd to our door a while back. Quiche for breakfast, delivered hot. When our van pooped out, it was repaired by a friend of a neighbor (who I would consider a bona fide neighbor any day). Lots of "How's she doing?" being asked when I drive to or from the hospital. "Love thy neighbor" has been put into practice on my block in a way that's not to common in most neighborhoods. I wish everyone had neighbors like I've got, and I look forward to returning the good deeds. Thanks, neighbors.

Denise waking up

I got a smile today!
Things are really flying right now. They reduced and then stopped the sedative yesterday (Avastin). Early this morning, Denise's dad called to say she was opening her eyes. I rushed over to the hospital, and she is slowly coming out of the mother of all hangovers. When I went in the room, she gave a small smile (and then promptly passed out). She's struggling to keep eyes open, trying to speak (impossible with the tracheostomy), move limbs, etc. She's able to follow simple command (stick out your tongue, open your mouth, move your foot, etc.). At one point, a nurse was looking at a wedding picture that's stuck to the wall and asked how old Denise was when she was married. Her mom said "23 or 24," and Denise weakly mouthed "twenty-four" immediately (ding-ding, correct answer!). Overall, she's in a haze, having hard time getting used to all the new tubes & needles. She must feel kind of clueless, like Keanu Reeves was in the Matrix, when he woke up with all those weird hoses (you're probably reading this and saying, "Uh, Phil, when ISN'T Keanu Reeves clueless in a movie?").

They started her on a new antibiotic yesterday called Tygracil. Really new. So new, the pharmacist hadn't heard of it. So new, a Google search only brought up one result just now. There was a blood thinner (Heparin?) started yesterday, then discontinued in prep for removing some fluid from Denise's pelvic region today. It was similar to an amniocentesis, but with a different target (I can't remember the name of the procedure... post a comment if you can think of it, please). They used ultrasound to guide the needle and avoid damaging anything. I don't know if they've started the blood thinner again or not at this time. The hematologist said that the blood is stable. So it ain't great, but at least it hasn't gotten worse. Her protein requirements are through the roof (200 compared to the normal 70). Hopefully, today's fluid draw will shed some light on the fevers, the blood use (her spleen's enlarged due to busting down so much blood), and give the team of doctors a good idea of what to do next. Denise also developed another pneumothorax today (we knew this was a risk as long as she was hooked up to the vent). Doesn't seem to be nearly as big as the first one. The doctor decided to leave the lung tube in from the previous one, so it's coming in pretty handy right now.

Denise's fever has been in the 101 range all day. We were happy to see that, since it had been in the 104 range for a few days. I got some encouraging insight from the neurologist yesterday. I was worried about the high temp causing brain damage. He said that it shouldn't be much of a concern. Apparently, the high temp is one part of the trouble, the other part is dehydration. No problem there. Denise is plenty filled up with fluid. Even at that, the heart is what to be worried about before any neurological problems. He said that when there are heat waves, the biggest risks are the elderly (I already knew that) and alcoholics. The elderly tend to have less of a perceived thirst, so they tend to get very dehydrated. Alcoholics drink plenty and get filled with fluid, but it's not the same as being hydrated with water.

Overall, it's been nice to see Denise waking up. Please bear in mind, though, that she's still sick enough to stay in the critical care section. She's still got quite an infection, blood concerns, and something else going on that they hope to figure out from today's fluid draw.

I'm still obsessing about what to say to Denise about losing the baby. Nobody's going to need to tell her it's happened. I just don't know what to do next. It's very frustrating to not quite be able to read her lips yet (movements are very weak). Her mom was pretty sure that Denise was mouthing the word "baby" shortly before the nurse asked us to leave so they could clean up Denise.

Today's episode of Purpose Driven Life said that "God doesn't waste a pain." Painful experiences are used to enable you to have the compassion & empathy to most effectively minister to others somewhere down the line. I've been aware of this concept for years. It was just kind of comforting in a way to be reminded of this, in the midst of all the pain we're going through now.

On a side note, Denise's skin looks really good. Her face looks like a porcelaine doll's (but more tan... her color's actually pretty good considering what she's been through). It was brought to my attention that the fever was pretty dry for a long time... sort of had the same effect as going to a spa in Palm Springs. And with all the antibiotics, fungicides, and other drugs she's been on, any organisms that even *thought* of turning into pimples ran away, wetting their pants in fear.

Thanks again for all the cards & emails to Denise's room. I've got every single one posted, and we've just got one more wall to cover. Thanks especially for the prayers. I think we're *completely* covered in that respect.

Mostly Good News, Increasing Blood Concerns

The doctor just said that overall, today is a positive one. The vent mode Denise is on continues to serve her well. She's increasing the number of breaths that she's attempting on top of what the vent is giving her. They're going to wake her to the point of trying to get her to respond to simple physical commands. She won't be coherent enough to understand Einstein's Theory of Relativity or anything like that. Then again, neither she nor I were ever coherent enough for that. The chest x-ray shows mild lung improvement from yesterday to today. She's better able to get rid of the carbon dioxide buildup, as well. Doctor says that since oxygenation is going well, they'll be able to put the breathing issues on the back burner (but continue to watch it).
The gastrostomy tube is being tolerated well. They'll keep adjusting the nutrition they give her.
Uterine exam shows good contraction after birth, and bleeding is about right.
One of the nurses that was gone for a few days came back & noticed that Denise isn't as swollen.
Ultrasound of legs showed no clots. I didn't think to ask about results from abdominal & female organs ultrasounds. I believe that these will point the direction to take (or not) in treating the possibility of SPT (previous post).
The most recent cultures don't show any growth of viruses, bacteria, or fungus that we're not already dealing with. That's good to hear.

So all in all, it was nice to again hear so many things going well (when in critical condition, I think that "going well" means "stable" or "not getting worse").

With all those things being stable, the doctor is focusing more attention on some blood concerns. Denise's hemoglobin count has been drifting lower. It's at 7.5. Doctor said that they usually try to keep it up to at least 10. But since Denise seems to be doing well with the oxygenation, current thinking suggests that hemo can go down to 7 and still be adequate to keep her oxygenated. So the doctors have a puzzle of figuring out what's going on with the blood. I was told that she may be developing antibodies to the blood from other people (so they don't want to give too many transfusions if they can help it). Or there may be bleeding in the gastro-intestional tract (they'll be checking... I think I remember hearing that the steroid could be causing some bleeding here). Could be a bone marrow problem. Could be due to the infection destroying a lot of blood. could be that Denise has developed antibodies against her own blood. I don't like the thought of her having developed an auto-immune problem. But we'll have to wait & see what the hemotologist & other specialists have to say. When you're on this many drips, and when there have been so many procedures done, the side effects can come from just about anywhere and very hard to pinpoint.

About Denise missing mommy, lots of you were reading my mind when emailing the suggestion of having the kids tape record themselves for Denise. I've got the recorder ready to go! Now that I've got my work schedule pretty much nailed down, I'm going to start contacting those of you that have offered to help with the kids, as well as looking around for child care. Since the kids don't have mommy, I'd like them to stay together so they at least have each other. I'm aiming to keep care fairly consistent, and close as possible to home for the coming months. Thanks for the heap of emails! Not only is it nice to post them on the walls for when Denise wakes up, it's been super-edifying to read all the well-wishing & prayers, offers of support, short notes of encouragement, long essays on how Denise has touched your lives... all of it! Keep it up, and keep up those posts to the blog (both encouraging and medically technical). Someone brought up that this will be a great thing for Denise to read some day. Darn tootin'!

New Vent, High Fever, SPT?

The new ventilator seems to be helping Denise! It has a special mode on it that is enabling Denise to use a 50% oxygen concentration and get 95-97% saturation. For those that would ask, it's a Maquet Servo-i and the respiratory specialists hang around it and admire it like it's a nice new car. They've lowered the Atavan drip so that Denise will be less sedated (still snockered, though) and try something called bilevel ventilation. The machine will give her some air at a normal 10-12 breaths per minute. On top of that, she'll be able add her own breathing (hence the need to lessen the sedation). At least that's the limited understanding I have. If you want to learn more, my aunt found a link for you to look up. Knock yourself out: Bilevel explanation

Fevers have still been brutally high (above 104). Could be due to infection-fighting, could be due to meds... whatever it is, it's scary-high. Though my old Boy Scout manual said that above 103.5 runs the risk of brain damage, current thinking seems to be 105-106. Obviously, we'd like to see the fevers come down and stay down.

There's a puzzle about why the white count is about normal, but the fevers are so high. One of the stones that the doctors have turned over is the possibility of Septic Pelvic Thrombophlebitis (SPT). For our education, here is a bit that I copied from the femalepatient.com about SPT:
Septic pelvic thrombophlebitis (SPT) is a rare condition associated with the postpartum period. Postpartum endometritis may spread throughout the pelvic venous system, including the inferior vena cava. The embolic disease process is more common in the right ovarian vein, whereas left ovarian vein disease with renal vein involvement is less common. Patients often present with pain and fever in the postpartum period. There may be initial clinical improvement with antibiotic therapy, but patients with SPT will continue to "spike" fevers daily, usually in the evening, despite the resolution of pain. Computed tomographic (CT) scanning or magnetic resonance imaging (MRI) studies are best for diagnosis. Care must be taken to rule out ureteral obstruction or urinoma. Patients respond quickly to heparin anticoagulant therapy, and long-term anticoagulation is seldom needed. Most clinicians continue antibiotic therapy along with anticoagulation, although research has failed to show a quicker resolution of the febrile course.
There. Now you know as much or more about it as I do.

Since hearing that Denise will be in the hospital for months, I've been worried about what to do with the kids once school starts. Today I started the ball rolling in figuring out what to do. I'm starting my 12th year at Pasadena Christian School in a few weeks. The school is bending over backward to accommodate my situation, and for that I'm very grateful. We came up with some very workable solutions for the next few months. Not only is PCS a great place to send your kids (shameless plug), but it's also been a great place to work (sucking up). Really, though, I'm blessed to be there. The amount of support I'm receiving from everyone- administration, co-workers, families- is comforting, humbling, and incredible.

More good news than bad! :O)

After a few downer days, I was glad to hear so much more positive than negative from the Doctor today!

The negative (ain't much):
Still very sick, of course. Critical.
Still trying to control fever (from infection and/or medication)
Lung x-ray looks about the same (not showing improvement).
She's diabetic. This may be caused by becoming permanently diabetic after gestational diabetes, or by the SoluMedrol steroid that she started yesterday. They're starting her on an insulin drip.

The positive:
No more air leak in the lung. They're keeping the chest tube in anyway, because lightning can strike twice as long as she's on a ventilator.
No more acidosis.
Sodium is approaching normal.
Spinal tap results are in, and show no growth of nasty things. No menengitis.
Overall, she's stable.
She's not on a one-to-one care status anymore (she's better enough to warrant sharing a nurse with another patient).
The hospital is trying to procure a special ventilator from City of Hope (as posted yesterday). Specifically, the one they want will show optimal PEEP and help them get Denise healed.

The doctor rightly perceived that I've been concerned (obsessing?) about the oxygen concentration going between small fluctuations, like 55% yesterday morning and going back up to 60% again in the evening. He said that the range they're working in is different than going from 75% to 100%. The 5% fluctuations in this range aren't nearly the concern that larger fluctuations are, and at higher concentrations. It's encouraging to me to have this understanding. Also, I noticed that 2 days ago, Denise was at 55% for only a few hours. Yesterday, she tolerated 55% for over half the day. So I'm hoping that the trend of tolerating lower oxygen for longer periods will continue.

Denise's white blood cell count is down to a normal range. This could mean that the infection is subsiding. Or it could be an effect of the Albecet or SoluMedrol. They can mask & mimic each other.

She's on an IV iron drip. They're going to start her on a weekly Procrit treatment. That's supposed to boost marrow production of blood cells (and get that hemoglobin delivering oxygen to her body better).

Thanks for the incredible support network you all are. I, along with Denise's folks and my folks, are humbled by all the caring words and offers of practical help (oh, yes, I'll be contacting you!). And we're flabbergasted (now THERE'S a word I've always heard but never typed before) at how many people that we don't even know are pulling for my wife.

Finally, there's a waiting game. I've been advised by a few people with medical background that I have to be patient and not get discouraged. At this point in the healing process, we just have to wait & see. Things might not change enough from day to day to be news-worthy. So if I start to skip a day here & there with these updates, don't be alarmed. Make use of that link to receive an email when I post a new update. Send an encouraging email to Denise's hospital room (they print 'em out on decorative paper; I read them all to her and post every one on the wall). Learn more about Valley Fever. I think I'll start to finally respond to all your emails & phone calls. Above all else, please keep Denise in your thoughts & prayers during the coming long haul toward healing.

55% oxygen, SoluMedrol flowing, Tough weekend

Long post coming, so visit the bathroom before you read on. Those of you with a wireless network and a notebook computer, carry on. :O)
Condition is still critical, but a nice thing has happened. She's been on 55% oxygen since 1am, and is still able to get 89%-93% saturation, depending on whether she's rolled onto the "good" lung or the one that had collapsed & has the tube. They tried 55% a day or two ago, but it wasn't tolerated well. I'm going to go over again after dinner, so I hope she's holding.
Still battling fevers, some of it from infection, some from the Amphotericin.
Another pint of blood because hemoglobin is low.
She'd been having trouble getting enough nutrition (protein concern from a few days back) with both the TPN through the IV and the tube down the throat through which the creamed pizza had been flowing. So they put the gastrostomy tube in a couple days ago and just started putting food through it yesterday. Let's hope that this method will get her the nourishment she needs in order to help the healing process.
Denise has been developing some redness on her back (because she's been on it for almost 3 weeks). So the nurses are rolling her on her sides during the day (this is more than just the automatic rocking that the bed is doing).
The arterial line is going to come out of her arm. It's been in a long time & started bleeding. I *think* they were using it for an arterial blood pressure (which has continued to be adequate without meds... they'll use a cuff to determine it from here on out). And I know they've been using it to draw blood to determine blood gas composition. They'll just have to stick her each time they need to draw now.
She's been started on a drug called SoluMedrol. The doctor found an article that suggested that this steroid would decrease scarring in the lungs. The inflammation caused by the lung infection is what it attacks. One of my aunt nurses thought that in addition, it might have the secondary effect of bringing down inflammation in the intestines, which will help absorption of nutrition (and amino acids in the proteins, and THEN she'll be able to make enough blood cells). And since she'll be getting 120mg/day in 3 doses over 4 weeks (a LOT), we also stand a pretty darn good chance of taking 1st place in the women's shot put event this year.
They attached a really cool graphing screen to Denise's ventilator. In addition to the graphs of each breath, it has a number that the regular vent panel doesn't measure. It's label is Dyn.Char ml/cm H2O. I figure it's tracking pressure measured in milliliters per centimeter of water, but anyone know what Dyn.Char means? My understanding is that the hospital is also going to try to borrow a super-fancy ventilator from City of Hope that measures even more things so they can get a better handle on how to most effectively help Denise.
Denise's dad said that a couple times last night, Denise tried opening her eyes. When I was there earlier today, the nurse got a nostril flare out of Denise when running a pen up the sole of Denise's foot. I take that as a good thing; further comfort that she can still respond to stimuli at times. Dumb, but amusing to me: when I got in my car and turned it on to go home, the song playing on the radio was "I Wanna Be Sedated" by the Ramones. I had to chuckle.

Denise & I started reading The Purpose-Driven Life the day before she started feeling ill. So I've been reading it aloud in the hospital each day. A couple days ago, we hit chapter 25: Transformed by Trouble. It was very encouraging. I'll be re-reading that topic a few more times, I'm sure. Overall, it's a pretty good book. I don't usually jump on whatever Christian trend is being hyped at the moment. But I'd say that this one's worth the read whether you're a newbie Christian, long-time Christian, or anywhere in between. Even if you're one of our loved ones that don't agree with the way Denise & I see things spiritually, I think you might find the book pretty insightful and encouraging during this time. I've been told many times lately that I might find comfort in Why Bad Things Happen To Good People, an oft-recommended book during times of crisis. I've read it, but I think there's a better one called Where Is God When It Hurts? by Philip Yancey. I just thought it did an even better job of tackling the toughest of questions when you start wondering why God lets some things happen. I've got a well-read copy that you can borrow when you need it, after I'm done going through it again.
We also started To Kill A Mockingbird today. It's one of the few books that I had to read in school that I actually liked (I liked the Mark Twain books, also). Denise remembered it being a favorite (though she couldn't remember why). So I thought we might as well pick up a copy and read a chapter or two each day together. I try to do different voices, so at some point I'm sure the nurses will think I'm nuts. At least the nurses will get a break from it... Denise is a captive audience. Good thing they say she' won't remember any of this, huh?

I've gotta say, the last few days have been really rough. Daniel was cremated. They say that two things in life are certain: death & taxes. Add permits to the list. I couldn't believe I was filling out paperwork & paying fees to deal with burial and cremation. With all my energy focused on Denise's situation, Danny's loss has been on the back burner. It all came up again a couple days ago. What's worse is that I had to make all the decisions without Denise's input. We knew with each pregnancy that we could lose the babies. But we never knew to think of what to do next with mortuaries, services, burials, etc.
The kids, especially Gracie have really been missing mommy. Gracie has thought through the situation so well that she suggested that maybe if she couldn't visit, she could call. When I said there's no phone in the room, she told me to crawl under the hospital and wire one in (Gracie & I went under our house to help a friend that was doing electrical work for us). I told her it's not my hospital, so I can't really do that. She said I can use the cell phone. I told her mommy's room doesn't get a cell phone signal. I'm running out of options to tell a pretty bright girl of 3 1/2 years. Jacob simply sometimes asks, "Mama?"
The news that the doctor laid on me Friday, that Denise would probably be in the hospital for months, has been getting me pretty low over this weekend, too. I've got to figure out what to do with the kids once I have to start back to teaching in a few weeks. We made a goal to have Denise stay home & be mommy. In many ways, I think it'd be easier on the family for me to be laid up than for Denise. I'm trying to focus on the fact that it's better for us to have her back in months than for us to lose her altogether.
On the same floor as the CCU, there is a hallway with some windows at the end. Everyone goes there to get good cell phone reception. There are smudges on the windows from people that I've seen talking on phones, leaning their heads against the windows in grief, helplessness, exhaustion... After about 3 weeks of this, and with all that's been mounting over the last few days, I finally added my smudge to the collection.

Get email notification when there's an update

Now you can sign up to receive an email within 40 minutes of a new update on Denise. You can find the link at the right, under the LINKS heading. My cousin Mike took this upon himself, without being asked. Totally his idea. He's the webmaster & art director for Stone Brewery (http://stonebrew.com/). They're good to my cousin, so buy Stone beer (beer-lovers tell me it's great stuff) and tell Stone to give Mike a raise because he's a great guy.

I'm off to the hospital.

Gastrostomy tube, recovery estimate

Sorry about not getting to post anything during the daytime. I just got back from the hospital and it's already past midnight now. I didn't mean to leave you all waiting for today's update in antici...
pation.
I'm really tired, so this is going to be a very short post. Doctor says it's realistic to expect that if Denise pulls through, she'll be in a hospital for months, not weeks (CCU, then to a facility where they wean her off the machines). THEN more time for recovery at home. Thoughts of summer, work starting, and what to do with the kids will keep me awake for a few more hours tonight. The kids miss Denise bad enough as it is.
Gastrostomy tube was inserted today (feeding tube removed from mouth). PIC line also inserted (they removed the catheter in her neck). The infectious disease doctor called off the use of the cooling blanket, so Denise is relying on meds & ice to fight the fever. There was another bronchoscopy look-see (no visual sign of new infection, but washing was done & will be cultured).
A good thing happened just before I left late tonight. Denise's oxygen concentration was turned down to 55% (the lowest it's been while in CCU) and her saturation was still hovering around 92%. Let's hope that the trend can continue.

Tracheostomy tube in, stomach tube sheduled for tomorrow

Denise had her tracheostomy tube installed about 6pm this evening. All went well during the procedure. They scrambled to get her back to the CCU, and the oxygen saturation dropped, but all went back to "normal" once she got hooked up to all the machines again. The specialist started her on the ventilator at 100% (and 100% saturation) at about 7pm. I just called and they have her down to 70% oxygen and 94% saturation. Again, the goal is less oxygen, more saturation.
The tube through her abdomen and into the stomach is scheduled for 2pm tomorrow. Let's hope all this works.
The kids are really missing Denise. Gracie (3 1/2 years) even hugged & kissed the digital camera when, while cycling through pictures of a trip they went on today, she saw a picture of Denise from a couple weeks ago. My mom said that while she was changing Jacob (16 months), he said, "Mama?" No matter how much other family & friends do a stellar job of supporting us, they still ain't mommy.

A nurse friend emailed the following to me since it wouldn't fit within the limits of the comments. I thought it would be both enlightening and reassuring:
"About the trach - if they're having trouble with the current endotracheal tube - you might as well go for the trach. This is going to be a long haul and Denise will be more comfortable with the tube in her neck (I know that doesn't sound true - but it is). When she's awake later - she can mouth words and keep her mouth rinsed out, etc. It's actually easier to "wean" her off the vent with a trach - eventually.

And the gastrostomy tube...might as well go for it at the same time. She'll be under anesthesia anyway - so cut down on the number of separate procedures that way. IF Denise can tolerate gastric feedings - over IV - it's much better. Keeps the gut working, decreased chance of blood infection from the TPN (IV nutrition).

They probably gave the Vanco to kill any roving bugs. It's a pretty big and strong gun. Is she having fevers? [yes]

As far as the saturation at 88-90% - we've accepted that level before so we can keep the oxygen at 60% or lower. I don't know of brain damage that patients have suffered from sats at this level. So good news!"

EEG results, spinal tap, other considerations...

Good news on the EEG from this morning! Even with the Atavan & morphine (given sometimes), her brain's still waving acceptably. The preliminary word on the spinal tap... uh... lumbar puncture (there's just no good way to name that procedure) is that things look good. Still waiting for cultures (another day or so) and professional word from the specialist.
As of coming home for a break today, her saturation was hovering 88-90% on 60% oxygen. So there's some decline from the morning. People have told me to take this day by day. We're going hour by hour (or minute, sometimes). Doctor says that there's a leak in a mechanical valve in the breathing tube. So plans are in the works for either replacing the tube, or more likely, going ahead with the tracheostomy for the long haul. They're also going to do another lung cam look-about (bronchoscopy) and maybe washing.
Protein's not going the way they want. There's been some feeding tube nutrition, some iv nutrition. What they're considering is placing a gastric tube right through her and into the stomach. If it gets to this point, hopefully that will get her fed better. Those of you that know us are practically screaming, "Phil, just get your mom over there! She'll feed Denise and the whole darn staff, too!" I know. But this is a little more intricate.
They started up a dose of Vancomycin, an antibiotic that I don't recall being used before. They're also going to run another set of cultures from blood, urine, sputum, etc. to make sure nothing else is going on.
Hemoglobin/red count was a little low, so a little blood transfusion is on the horizon, too. Many have asked (as have I) about doing a directed donation. The doctor thought that there was nothing that would make donating necessary at this point. It takes a couple days for whole blood & platelets to be processed. So there's not much point unless they know a few days ahead that Denise will need something.

A word about the hospital staff...
Pray for these folks. God has blessed them with an incredible amount of talent, knowledge, drive to work hard, and desire to help people. They are truly conduits through which God's blessings are flowing right now (Yup, in spite of all that's scary right now, there ARE good things). The hours are long. Their feet must be killing them. They should probably switch their paychecks with movie star paychecks (then each would get what they deserve). They see suffering day in, day out in the CCU. They are still expected to keep on their games. In spite of all the stress that the staff deals with in the CCU (and of course, in reglular life outside of work), we've seen excellent people skills and a level of caring & concern that matches that of Denise's family & closest friends. Staff from other parts of the hospital have come by to check & see how she's doing. Our hope & comfort comes from our faith through Christ that God is in control. The doctors and nurses are definitely His instruments.

If any of you at the hospital are reading this, know that you are VERY appreciated.
And there will probably be thousands of people all over the world praying for you tonight.
Thanks for taking care of my wife.
:O) Phil

No news good news, oxygen to 60 :O)

Still haven't heard from the doctor this morning. Usually, the earlier I hear, the more urgent something is. So I'm figuring that no news is good news. They just had me leave so that they could do an EEG on Denise. How wonderful that would be if the results came back top-nothch!
Some ventilator news: oxygen concentration set to 60%, saturation maintaining about 92% on average. They also tilted her bed up to 30 degrees. So apparently her heart can handle pumping the blood up to her brain. That's a big step in the direction we want to go, compared to yesterday! For those that have emailed to ask, the ventilator is a Siemens Servo Ventilator 300. The peak today floats about 32-34, mean 20, end exp 12. I don't know what any of it means. So you nurses out there can explain it to us lay folk.
As always, I'll post again when I have something to post.

Still waiting to find out about lung

Unfortunately, flipping Denise onto her front didn't have the effect it has before. They had the oxygen concentration cranked up to 100% and were getting about 92% saturation in her body.
*BUT* when I visited last night, Denise was on her back, oxygen was set to 65%, saturation was still about 92%. Same saturation with less oxygen. For those that will surely ask, I forgot to look at the PEEP (pressure for us lay people... maybe the had less pressure while proned). Anyway, we like less oxygen requirements. I'm eager (nervous) to talk to the doctor this morning & see what's up.

Thanks for all the notes being emailed to Denise's room. I read every one to her, then sticky-tack them on the wall in her room, and they're encouraging to me as well.

URGENT - lung hole being kept open by ventilator

URGENT- Denise has a new challenge, people. The next couple days are crucial (what day isn't crucial?), as Denise needs to get more oxygen on her own with less help from the machine. The hole that's in her lung (bronchopleural fistula) needs to heal because it's letting too much air out; she's not fully benefitting from the oxygen she's getting. The hole is being kept open by the pressure of the ventilator. Some of the air that they want to get into her is going through her instead.
The problem is that too high a concentration of oxygen can make the lungs less elastic, so they don't want to have it cranked up too high. However, if they put that less-concentrated oxygen into her lungs in at a higher pressure, she absorbs more oxygen. That pressure is turning out to be a problem, as it's keeping the hole open. I picture trying to patch an inner tube that's constantly under full pressure.
So what they're going to do is flip her into that prone position again. It's proven to be very beneficial to her before, when she needed 100% oxygen concentration on her back, and only 80% when prone. That was a HUGE help. Our hope is that that since she needs on average maybe 70% oxygen on her back now, they can flip her, lower the pressure, maintian the concentration (or perhaps lower it... wouldn't that be a miracle?), and let that hole heal up. It's risky to move her with all the tubes & wires. But they've done it before several times, so I'm confident.
Remarkable progress happened last Thursday & Friday when things got scary. Keep Denise & the medical staff in your thoughts & prayers heavily at this time. Keep in mind that in addition to the current obstacle, there's still the inflammation & fluid in the lung and there's still a raging infection that Denise is fighting.

On the positive side:
-so far, no strep for anyone else that's been with us
-Denise's blood sugar is up because they put her on IV nutrition... she absorbs it better, and that will hopefully make for faster healing of this hole as well. She was probably getting tired of the creamed filet mignon dinners, anyway. :O)
-The lumbar puncture (spinal tap) was done yesterday. Not all results are in. But the stains don't show any presence of things we don't want to see. The cultures will come in later today, and the infectious disease doctor will look at them later.
-MY FAVORITE: Night before last, when they put the lung tube in, I believe God worked a plain-clothed miracle. The specialist that was needed happened to already be there at that odd hour of night. Opinions are that if he had to be called and drive in, Denise would've died. In the midst of the difficult road we're on, that was a great example of a faith-builder.

Almost lost Denise last night

After visiting the hospital, I found out the gravity of last night's crisis. Fortunately the nurse was on her toes, the specialist that they needed happened to be there already, and things went well considering the situation. Apparently she developed a leak in the lung and the right lung collapsed. The pleural sack that's between lung & body cavity had lots of fluid that they needed to get out. She couldn't breathe, even with the oxygen set to 100%. As stated earlier, too much oxygen is as bad as too little, so we'd like to get her off of the stuff. Denise's lungs are less elastic so it's difficult to breathe. They are under more pressure than they should be. My limited understanding makes me think that all of these things came into play. They put her on a "Pleur-Evac" machine (sounds like something that should have an "As Seen On TV" label on it). It helps her get the fluid out of the pleural sack. Looks to me like the fluid is blood. Most of her stats are near where they were before the emergency last night. There were even slight improvements in her breathing & heart rates (both were slower... good!). There is some risk while the Pleur-Evac is hooked up. So, as with everything, keep us in your thoughts & prayers.
Now for the medically-inclined that have been asking:
Amphotericin B Lipid Complex (Albacet?) is tackling the fungal stuff
Imipenem/Cilastatin (Primaxin?) is nailing the bacteria. (Denise loves Stan Getz doing "Girl from Ipanema" and now she's the "Girl on Imipenem"... bad joke. Sorry. I deal with this through humor.)
Kidney function is at .9, which is considered OK (was 1 yesterday).
Lowering the diuretic because they think she may be dehydrated (a puzzle to me because she looks swollen).

Scary night, lung tube inserted

Denise has a lung tube now. Her dad Joe was with her overnight and saw the downward trend (in oxygen required versus oxygen saturation) & x-ray that lead the doctors & nurses to view the situation as an emergency and made the decision to put in a lung tube. Joe said that as of the time he left this morning, it looked like it was the right decision, as Denise's numbers improved, some being the best he's seen yet.
I've been trying to talk to someone to get specific details but haven't been able to yet. That's OK, I'd rather that they focus on taking care of Denise rather than sit on the phone with me. So I'm going over to the hospital for a while. I'll post facts as soon as I can.

Visits limited to family only for a while

Denise sure is special! So many people have been by to visit, that the nurses & doctors said they really are concerned that Denise needs more quiet & rest. So for the next few days, they've requested that we let everyone know that visits are limited to immediate family for now. If anyone else visits, either we have to be with them or we have to call ahead first to give permission. Don't worry... when things change, you bet I'll post the info here!

When I visited earlier this evening, I noticed a couple good things. They raised her bed up a few more degrees (her blood pressure's still good enough to get blood to her brain even when she's sitting higher). Her heart rate & breathing rate were both slower (they have been, and still are, too fast). Otherwise, things were still stable.

And now for a computer literacy lesson (for those of you that don't know me, I teach K-8 Computer at Pasadena Christian School in Pasadena CA). A blog is just a journal that's on a web site. If you can type in a web address to see a web page, you can read the blog. It's not anything fancy, and you don't have to worry about "not knowing how to use a blog program."

Thanks for the comments! To leave a comment, click on the link at the bottom of each entry that says how many comments there are (it's to the LEFT of the little white envelope) . Fill in the form, post your comment, and it's there for all of us to see! The little white envelope is so you can send an email to someone that would be interested in the blog. And yes, by popular demand, I'll try to get some pictures of Denise on the blog so that our prayer warriors that have never met us can see who's so special.

We have strep in the house

Well, it turns out that Denise's sister & her baby have strep and are started on antibiotics. So we'veall been exposed for the few days that they've been at our house. I'm going to take the kids and myself to the doctor today for a checkup and meds. Let's hope that we don't get it and that nobody's passed it to Densie. When it rains, it pours, don't it?

So if you've been at our house during this ordeal, you should have your doctor check you up before coming back for a visit. And as mentioned in an earlier post, please don't visit if you even think you might be getting sick (or if you've been around people that are contagious). Denise's white cells are busy enough battling the infection. They don't need more to do. They have masks to hand out in the CCU, but let's not take a chance.

Valley Fever seems to be the culprit

Denise has been in the hospital 2 solid weeks.
I spoke to the doctor earlier today. Here's the breakdown:

The fungus that's the cause of Valley Fever was found in blood, lung, and plascenta. So they're pretty sure that this is the actual cause of her condition. Since it's in all those places, she has the disseminated form of the disease (the worst, with a considerable mortality rate). They still need to do the lumbar puncture to determine if it's gone into the spinal fluid. The hematologist was with her at the time, trying to determine if bleeding would be an issue (as is a concern for the procedure she needs to be cleaned up after the labor). Denise grew up in the San Joaquin Valley, the hotbed for this fungus. Apparently most people have this, but fight it off. However, with a depressed immune system, pregnancy, and gestational diabetes, the fungus probably took the opportunity to grow. You can do a Google search for coccidioides immitis if you want to learn about it.

There's a chance that they will do a tracheostomy so that they can put a breathing tube in her throat instead of in her mouth.

Her body is creating little micro-blood clots, apparently associated with fighting the disease.

They stopped the Xigris drip 16 hours early (usually a 96- hour drip) in anticipation of the lumbar puncture. She got the benefit of about 3 1/2 days of that stuff. On this topic, the nurses should probably comment on this blog. But one nurse told me that in her 10 years of nursing, they've only used this drug on one other patient that she was aware of. The patient was a 19-year-old female with menengitis. The Xigris was VERY effective in that case, and it seems that it's played a big part in getting Denise this far. The nurse also said that she can't imagine how much each drop of the stuff costs (it's VERY expensive).

The improvements include the following:

Her blood pressure is still acceptable without the blood pressure meds. I like seeing fewer bags hanging from the medicine trees by her bed.

Denise's ventilator has been lowered to give her a 60% oxygen concentration. The faster they can lower that oxygen concentration from the ventilator, the better.

Creatinin (indicator of kidney function) is 1 (higher numbers mean less functionality). This is considered normal, and in fact very good considering her condition.

Thanks for all your support. We're getting muffins, care packages, flowers, cards, calls, toys for the kids... on and on. Normally, I would write a thank you note for each kind act. But they are so many and so fast, and there's so much chaos that I'm afraid that the expression of thanks in this post will have to do. Tell you what, though... when Denise is home, you're all invited to one big huge barbecue!

:O) Phil