Monday, February 15, 2016

Week 130: Something vicious

On the plus side, the new nanny started and so far she seems great.  She's very engaged with the kids when she's here, playing with them and reading to them.  Since she started I even had, oh, I don't know, let's say two relatively normal days.  They felt unbelievably luxurious.  Their sheer simplicity and ease should have been a warning that things could not stay that way for long.

Enter something vicious.  As in some sort of new, vicious bug that decided to infect Lemon just when we'd started to actually see some real weight gain from the ciproheptadine.  This bug is definitely different than anything we've had before.  Our pattern for the entirety of Lemon's life is that first he gets a cold, with sneezing and a runny nose.  Then we wring our hands and do extra treatments for a few days, until the cough sets in.  Then we do extra treatments for a while longer to see if we can kick it, which we've done once or twice.  Otherwise, we're calling for antibiotics.

Something vicious left us no time for hand-wringing, hemming, or hawing.  It came in without a runny nose--straight to cough on Friday.  We started extra treatments right away, but we weren't optimistic.  Saturday it seemed like perhaps it wasn't getting worse, until the evening when it became clear that it was.  On Sunday, Lemon was coughing as hard and as much as I've ever seen him cough in his life.  He also had a fever, which he has pretty much never had with any of his other respiratory bugs--he got up as high as 101.6F on Sunday afternoon.  Suffice it to say that, although our treatment plan says to wait 5 days to see if the cough improves, we were on the phone with the doctor on call by mid-morning Sunday, and started antibiotics in the early afternoon.  We're trying levofloxacin this time.  It's definitely helped a bit already--at least things are no longer getting worse, and they seem to be getting incrementally better. 

It kills me to see the weight we fought so hard to put on him just melting off in a matter of a few days.  We can barely get anything into him, and not everything that we get in stays in.  He has a very touchy gag reflex even when well, and when not well it gets even touchier.  We've stripped his medication and vitamin regimen down to the absolute essentials--basically just the antibiotic and enzymes on those few occasions that he expresses any interest in food whatsoever.  At least he's drinking enough water and juice to stay hydrated, but that's about it.  We have a clinic visit coming up on Wednesday, which was supposed to be the follow-up visit where we saw great results from the ciproheptadine.  Instead it will be a sick visit where we figure out if the oral antibiotic is doing enough, and see how much ground we've lost on weight gain in the mean time.

Yesterday, in the midst of all this, I got a call from the CF Foundation, wanting to do a survey about our CF center.  I never say no to anything having to do with CF, so I took the call and started answering the questions.  About 2/3 of the way through the survey, there was a question along the lines of "Overall, how is your child's health?"  Of the options, I selected "very good."  As soon as I said that, I thought, am I kidding myself here?  We're struggling continuously with weight gain, and we just started yet another round of yet another oral antibiotic to fight off one of the worst respiratory infections he's ever had, and the list of medications and supplements that we have to use multiple times a day every day just to cling to what we have is a page long.  I suppose as his mother I'm just not inclined to think of him as sick.  When he's well, he's so well, so full of life, bursting with intelligence, in constant motion.  We're hoping to have that Lemon back very soon.

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