Friday, April 10, 2009

Hospital. . .sigh

Will was admitted to the hospital yesterday; so, here again to the forefront comes the main reason I started this space: to keep family and friends updated when Will's health gets messy.

As is almost always the case his cf/transplant clinic had him go in through the emergency room. This is just about the most chaotic and awful way to be admitted to the hospital one can imagine and generally involves explaining to no fewer than three teams of student-doctors his entire complicated medical history, while they try to do advance pulmonary diagnostics and screw around before they finally call the pulmonary fellow and just get Will admitted already. Will is usually much more resigned and patient about this than me. I didn't go with him yesterday (work. . .Liam. . .I used to always go with him, but now I can't); when I'm there I tend to say over and over "his pulmonary doctor from the transplant clinic told him to come to the ER to be admitted" and nothing else. This is undoubtedly annoying to everyone, so that's probably a good reason I can't go with him so much anymore.

No real information yet. He had an x-ray. . .which he reports looked "good" but then he also said the docs have called what he has pneumonia so, I feel not sure about how good the x-ray might really have looked. (On the other hand, what happened in Dec/Jan when he was last in the hospital was that the first x-ray looked clear but once he got re-hydrated the second x-ray was a mess.) He had a bronchoscopy. He is on vancomycin and "another" IV antibiotic (he wasn't sure which one). He has diffuse infection (they think bacterial) in both lungs and a "node" or "clump" of something in the upper left lung that might be fungal or might be viral or might be something else, it didn't look bacterial to the docs. They're doing tests and seeing what grows out. Maybe some answers tomorrow. . .one hopes. He's on 2 liters of oxygen and has been stable at that rate since last night.

I haven't decided what to do yet. . .Will's spirits sound pretty good , so it might be best to just let him go with this on his own. On the other hand, it would be nice to hear first-hand what the docs think is happening and ask all my nit-picky questions. (What are the viral levels in his peripheral blood? What is the level of that inflammation marker? What inhaled antibiotics besides Colistin---which he refuses to take---could he have access to at home? Etc.) Maybe I can talk with the doctors on the phone. Will reports that they told him he could go home tomorrow maybe (provided nothing gets worse overnight and he seems stable), and wait out the full diagnosis here; but he didn't sound like he thought that was the best idea. I guess he wants to wait and see.

In other news: Liam had a pretty good day at school. He tried numerous fruits and they made a chart of which ones each child tried and which each liked the best. Liam liked strawberry the best (no surprise there). Only one child was recorded as liking the lemon at all. Liam is starting to connect with the school-room a little more. . .today when I got there to pick him up he showed me which tissue-paper flower he had made and where it is on the wall. Pretty good for not quite two. Meltdown at bedtime (he dislikes changes in routine, and not having Will here to read him bedtime stories is a pretty big change), but he's asleep now. That first, really grateful, sound sleep. . .the one where I know that I have at least 5-8 safe minutes to do the most important things of the evening whatever they are and maybe as many as 90 minutes or more before he is likely to wake up. (Edited: he just woke up crying to beat the band at the 45 minute mark; needed the full rocking back to sleep. I think he has a stomach ache poor thing. I hope it's not another ear infection. I suspect my minutes to myself are limited.)

So, to wrap this up: I'm flattered that two of the women I've "met" and really admire through IVF boards sent me one of the awards that is making the rounds of that network. They are both in the middle of cycles . . . one in early pregnancy, one facing roller coaster, ambiguous results and beginning to look at donor eggs. Both amazing in the brave and positive way they are taking the journey to create their families. So, thank you so very much EB and meKate, you're both in my thoughts and intentions this weekend.


Deron Arnold said...

Thinking about and praying for you guys. Following your journey closely...

Lisa said...

Sorry to hear about this Elizabeth! Please let me know if there is anything that I can do...I am just a few short miles away!