Monday, March 14, 2016

Week 134: Under the knife

Today was a huge day. I write that like the day is over, which it's not, since hospital days never end. But here's what's happened so far. We got up at 4:30 this morning so that we would have time to do our morning treatment, since CF never sleeps. Then we packed up and loaded the car with food, medicines, medical equipment, and of course the essential coffee pot, and headed to the hospital.  

We checked in at around 6:15, and were visited by various parties and signed assorted forms. We also received the ultimate assurance that we are doing the right thing, since Lemon's weight today fully clothed was a full pound lighter than he was naked two weeks ago. Since we were the first surgery of the day, they hadn't had time to get behind schedule yet, and I went back to the OR with Lemon right around 7:30.  He's totally used to having a mask over his nose and mouth, so he didn't fight the anesthesiologist at all and was asleep within minutes. Then I went back to the pre-op room to wait it out with Papa Bear and Lime.  

Everything went pretty much exactly according to plan. They placed the PICC first, then did the G tube placement, then the bronchoscopy, for a total of about 3 hours. We got updates about every hour. Finally, when everything was done, I went back to the PACU to wait for Lemon to wake up, and then waited forever and a day for the anesthesiologist to clear us to go up to the inpatient floor. The only minor wrinkle was that Lemon was having a little trouble maintaining good O2 saturation, so they put him on a cannula with a bit of supplemental oxygen. He HATED that. Fortunately, things stabilized after a few hours and they took it off. 

This admission has been complicated from the start, with doctors from multiple departments involved and so forth. There was so much ambiguity about the chain of command that our insurance company didn't receive the pre authorization form until Friday for a surgery we scheduled weeks ago. And they only got it at all because Papa Bear went to the hospital in person several times last week to demand it. Then today when we got to the room they had put up a different antibiotic than what we had been told was planned. And we were thinking it was a 7 day admission for the full course of IVs, but the home pharmacy people came to see us right away to talk about home IVs. And there were two conflicting sets of orders for the tube feeds. And no diet orders at all with room service. In any event I think we managed to get it all straightened out now. But it's exhausting to be the one organizing your child's care on top of everything else, and it's sort of disquieting that it's necessary. Which in this case it absolutely was. 

In any event,  I should try to get the limited rest that an every-six-hours antibiotic schedule interwoven with an infant's sleep cycle allows. Posting from the phone this week so no photos but I'll try to get some up next week. Thanks again to everyone who reached out, we feel your love. 

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