I talked to the nurse-practitioner about Lemon's cough. I have felt like this fall we have spent precious little time at what I would consider "winter baseline." Most of the time, we've been hovering somewhere above it. And yet, we've only done Cayston once. So, I was starting to wonder if we were under-treating things. But, the nurse-practitioner told me that it's been a rotten fall for a lot of families, and that they have a lot of kids in the hospital right now as a result. And, she thinks we're doing fine. Despite all of the illnesses and associated reductions in tube feeds, Lemon has actually more or less held his ground weight-wise since September. Of course, he grew some so his BMI went down, but not by much. So, our instructions from a respiratory perspective are to keep on keeping on, so to speak. From a nutrition perspective, we are to add yet more DuoCal to our tube feeds, to see if we can actually gain some ground rather than just treading water. So, we've started that and will see where it takes us.
Lemon was surprisingly calm about the surprise lab draw, and I'm glad to report that the results we got back were great, all of Lemon's liver function tests were more or less normal. We have a follow-up scheduled with GI for next month, so we'll see what the doctor wants us to do now. Lemon's throat culture also came back with no surprises, phew.
The CT scan was actually really fun for Lemon. He liked that we got to go on an extended walk through the bowels of the hospital to get to the room where the machine was, and he was amazingly cooperative about holding his breath and staying still. I think he got a big kick out of talking to the technician through the intercom while the scans were running. And, luckily, the whole thing only took about 5 minutes. Unfortunately, the CF team doesn't get to see the results of the scan, since it is a research scan and not a diagnostic scan. The research radiologist will tell them if there are any unusual findings, and if there were, then we would have to get a diagnostic scan to follow up. So, that seems like kind of a waste to me (I mean after all, presumably the research scan is good enough to actually see/tell something, right?). But, anyhow, I suppose if all we learn is that the findings are not unusual, we do have one more tiny bit of information than we did previously.
Other than all that, we are now in the full headlong rush to winter break, where we alternately have fun and wonder what we will do with the kids with two full weeks off from school. I'm sure we'll come up with something, the only question is what...
