Just in case we thought that balancing elementary school and CF would be easy street, the second week of the school year put us in our place. First of all, on Wednesday we had our much-anticipated visit at the CF clinic, which meant that I had to keep Lemon out of school for the day. As expected, the random pulmonologist was essentially a neutral force--she listened to Lemon's lungs, said that he sounded great, asked if I had any questions, and left. Our dietitian was sort of shocked by Lemon's weight gain, and agreed that since he is now in the 92nd percentile for BMI, we can back down even further on the tube feeds. So, now we're down to 2.5 cartons of formula plus some DuoCal overnight. I did not want to give up the DuoCal because I feel like it somehow results in better weight gain for Lemon than an equivalent number of formula calories. I don't really have any evidence for this feeling, other than the fact that Lemon has gained something like 7 or 8 lb since we introduced it, but I also like having it on hand for when he is sick and we have to take the volume of his feeds down. Anyhow, to go from 4 cartons of formula per day to 2.5 over 6 months feels like a tremendous advance.
We also made progress on project pill--that is, switching all of Lemon's medications over to pill form now that he is such an adept pill swallower. There was a ranitidine pill available in the same dose as Lemon was getting with the liquid, so that was a straightforward substitution. After consulting with GI, it was decided that we could give Lemon the smallest available ursodiol pill, which is a little bit of an increase in terms of dose per unit weight but still well within the dosing range. The upshot of all of this is that 1) Papa Bear and I will no longer have to spend half our lives washing syringes and 2) we won't have to mess around with Lemon's button and extensions and whatnot in the morning anymore. It doesn't sound like much, but this is really huge for us, and for Lemon--now he can feel more like a regular kid, who just takes a few pills in the morning rather than having someone lift up his shirt, connect a tube to him, and pump stuff in.
Just to keep things interesting, Lemon and Lime both contracted a beginning-of-the-school-year cough, which appears to be something of a widespread and time-honored tradition in our school district. With Lime, of course, we can just sort of let things ride, but with Lemon, we have to intervene a bit. I picked him up from school early on Thursday to do extra therapy, and even with that he coughed to the point of puking during the night Thursday night, but then seemed fine Friday morning. Friday mid-day I got a call asking me to pick him up at school because he was sick, but he came home, took a nap, and seemed totally fine afterwards, and not coughing much, so I chalked it up to exhaustion/dehydration/hunger from the adventures of the previous night. I did an extra round of therapy on Friday afternoon, too, even though he seemed pretty much OK. Then Friday night, he coughed almost as much as Thursday night, and with the same results. Blech. So during the night Friday night I decided that we'd better start Cayston on Saturday, because he was clearly sick. But, he seemed so well on Saturday that I couldn't bring myself to start it. And indeed from then on he's seemed basically fine, almost no cough at all and the formula staying where it belongs.
All this makes me think I really need a new metric to decide when to intervene with antibiotics. My metric used to be coughing through the night with puking. But, he did that two nights running and seems (fingers crossed) to have kicked this without antibiotics. So, had I followed my first instinct to start Cayston on Saturday, we would have done two weeks of it for no reason at all. I feel like I need some kind of dip-stick or meter that he could breathe into that would tell me if the problem was being caused by bacteria or not. I don't second-guess my decision to treat H. flu aggressively back in June, but that was a much easier call, we were all sick and on antibiotics. But some of the previous things where we attributed his recovery to Cayston--were those really bacterial? Or would they have cleared up without intervention? There's no way to know, and it feels so primitive to be shooting in the dark like this. I don't want to intervene when it's not necessary, and I want to intervene in the most effective way possible when it is. The fact that we can't distinguish between the two in this day and age is beyond frustrating.
