Manny had 104.1 fever, 200 heart rate, respiratory distress, etc. so I took him to the hospital. One xray later and it was confirmed ... atelectasis (along with bronchiolitis and sinusitis). What is that? Basically when part of the lungs collapse. For normal, healthy adults it's not a huge deal. For kids with neuromuscular disease it can be life threatening. And treatment is tricky apparently.
I am thrilled to have my favorite team of docs on the case though. As I write this, I have no clue what the course of treatment will be or the duration of our visit or the prognosis or the criteria for discharge. I'll update as I have it.
2pm Hospitalist came by and gathered a little bit of history, did a quick exam and told me they think it's viral so no need for antibiotics at this time. I'm conflicted about this decision. 1) The standard of care for atelectasis for kids with neuromuscular disorders is to do an aggessive treatment of broad spectrum antibiotics as a secondary bacterial infection inevitably sets up in the lungs. 2) However, when he has antibiotics, his c-diff flares up and he has to go off feeds, has chemical imbalances and multiple other problems. Sooo ... there's always this debate. Pulmonary wants the antibiotic. GI/Infectious diseases doc says no. I don't know what to think.
This doc also said that if he has any respiratory issues tonight, he'll be sent to the PICU for bipap or cpap. Apparently, at this hospital, the first time you're put on bipap/cpap, you have to be in the ICU. That would be a great inconvenience to say the least. (Less visiting hours, no bed, no TV, no space for "stuff", even his wheelchair can't be in there with him and that's his only seating, etc.)
The Pulmonologist also seemed to think this was "no big deal" and I hope he's right. Because what I read about atelectasis with kids like Manny ... well, it's very serious. So I hope they know Manny.
3pm and we had visitors. Dan (daddy) and our friend Bob came by. I'd driven Manny to the hospital by myself at 4am so the van is here with me. We only have one vehicle so Dan is stranded without it. So Bob swung by the house, left his wife Ann with the kids and brought Dan here. Since he was on his way anyway, I had him bring us a few more things that I thought of we'd like to have while we're here (like a chair for Manny and some food for me).
They left at 4pm and just as Daddy was leaving, Manny started to drift to sleep. That's yet another proof he's not 100% as this kid doesn't nap ... even when sick! He must be wiped out.
It's now 8 and I've laid him in bed to watch a Baby Einstein video and hopefully doze off to sleep. (Doubtful on that part since he had a nap today and the never ending stream of people in here but I'm trying anyway.)
Part of me hopes he's perfectly fine tonight and this is all done. Part of me knows that's not the case and that he'll have the same issues again.
But I also have this weird fear that he'll be fine tonight, they discharge us tomorrow and then he does it all over again tomorrow night at home and we start again. So instead of that, I'm hoping that he actually does what he's been doing at home. Probably won't know until at least 2-4am if the pattern holds from this previous weeks' episodes.
And now we wait.