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

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Women Health - Pregnant Women Don't Just Stay At Home; Go Shopping !

Most women like to go shopping. However, sometimes pregnant
women reluctant to go out because they are afraid could harm
them. That's not true! Go and have fun. You don't have to spend
any money; just get out and window shop. Try on shoes; check out
the new fall purses or sample a new cookie at the corner stand.
Shopping is very therapeutic for women, and it gives you a
chance to clear your mind.

If you are feeling ambitious, though, or cannot justify taking
an afternoon off to shop, give yourself a chore, like deciding
on nursery room colors or selecting a crib. Then, you will feel
like you are accomplishing something as you go.

Do not get stressed out, however, if you do not find what you
want right away. Remember, you are just looking now. There is
no hurry to immediately find and/or buy everything, especially
since friends and family will want to help by bringing gifts to
your baby shower.

If you would rather shop for clothes, purses or makeup, though,
that's also fine. Sometimes, it is good to step away from the
"mommy" world and remember that you are also a woman who has
her own needs and wants. Don't feel guilty if you need some
"you" time or if you need a little something to perk up your
spirits. A new maternity outfit or a sweet scented lotion may
be all you need to feel de-stressed and reinvigorated. You
might also feel good just trying out new perfumes and seeing
what those strappy sandals look like on (even if you know they
would kill your feet!).

Just remember that while you are out shopping, you need to be
relaxing. Treat yourself to an ice cream cone or catch a new
movie if the mall has a theatre. Any of these activities will
help you let go of your stress and refresh your spirits. Then,
you will be fully ready to be Mommy again!


About The Author: Sara Jameson writes her experiences in "The
Very Happy Pregnancy: Avoiding Stress and Depression." Check
this out http://www.sign-of-being-pregnant.info and
http://www.pregnant-woman-101.info

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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.

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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.

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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.

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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.

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