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.

Funeral today

Our dear friend and colleague Mike died last week after a six or seven week ordeal. He had heart bypass surgery and was recovering really well, and then had a stroke and was finally starting to recover from that, and then got pneumonia and died. I had forgotten how l-o-n-g big Catholic funeral masses can be. Long. But, the church was full to the rafters and the Mayor and most of the city council were there even. I think it's probably a comfort to the family to have so many people and such a manifestation of their loved one's service to and connections in the community.

Lovely service except there was the whole: Catholics who are able can come forward and receive communion. . .everyone else, stay where you are. (For those of you not steeped in the Catholic faith, I'm no longer eligible to receive communion, pretty much, ever, since IVF is considered a mortal sin because "extra" embryos are created and they "die," and, also, some people end up discarding unused embryos (which we did not) and I refuse to repent and say I would never do it again, because, well, of course I would do it again if it were the only way to have a child, which, for us, it was.)

Anyway, the whole thing was pretty long on theology and pretty short on fun stories about Mike and what a great guy he was, and what a profound difference he made in so many lives and in this community. And that was too bad, because I heard at the cookies and coffee after that lots of people had some really fun stories they were hoping to share. Rest easy Mike, you'll be sorely missed, but there is an entire town (pulse some more) of people who are going to do their best to help take care of your lovely spouse and beautiful daughters. And, I hear you might get a public memorial down at the new LOTT interpretative center or at rotary park---wouldn't that be something to make you grin!

From the desk of. . .

Poor Liam has really been having trouble sleeping this week. And he is tired, tired during the days, often wanting to fall asleep in the late morning before lunch. I'm experiencing an unexpected big slug of work as clients try to get things wrapped up before January. So, tonight is the second or third night this week I'm working from Liam's room. He has been waking up crying every 45 minutes; this is the only reliable way to help him sleep. I cozy up with my lap top in "dim" mode and he snuggles up and sleeps away. So far, so good.

I get a fair amount of talking-to from other parents about how Liam should learn to sleep on his own in his crib, and as much as I agree that it would be nice, I can no more imagine leaving him to cry at night than I can imagine not comforting him after a fall outside. He is 18 months old; still such a small person. Everything in human evolution wires him to understand that being with the group is good and safe and being alone is not normal. He doesn't see me at all during the day. If he needs his mommy to be with him at night to help him sleep -- so be it. I think our modern practice of putting babies in cribs and tucking them in separate rooms is weird, at best, anyway.

I am thoughtful tonight about how blessed and lucky we are to have Liam. I've had occasion to email with another woman who has been trying to conceive a child through IVF (her husband has cystic fibrosis) and it is looking like after initial encouraging results, at 7 weeks or so, she has been advised that she most likely will miscarry. So devastating; my heart breaks for her.