Monday, February 13, 2017

Week 182: Around again

And now, we know the answer. The question last week was, "Can Lemon bounce back from a non-respiratory virus without getting some kind of respiratory infection?" Spoiler alert: that would be a big fat N-O.

Lemon did manage to kick the fever pretty much as fast as Lime. By 24 hours in, his temperature was normal, and we kept him pumped full of Gatorade so he stayed well hydrated. Ultimately, though, that was not enough, and before we'd gotten much past mid-day on Tuesday he'd begun to cough again. And with the coughing, the inability to tolerate the nightly tube feeds. But, still, he wasn't coughing that much, relatively speaking, so we let things play out for another few days to see if just by chance, he could turn things around. We had our supply of Cayston on hand (it did, indeed, just show up on Wednesday without a fight), but we were loathe to start it because it's such a production for all involved. We still weren't convinced that there were bacteria there to fight--we had some hope that it was just a little bit of extra junk brought on by the virus, and if that were the case, the antibiotic wouldn't do anything, anyhow. And, Lemon seemed, all things considered, sort of OK--not exactly himself, but we've seen a lot worse at this point.

On Friday morning, I had Lemon hop on the scale. Just to review, at his check-up on Jan 27, he was 35.3 pounds, down from a high of 36.6. That's when we rejiggered his nutrition plan and increased the volume of the night feed. And that worked--in a week, he'd gained back the pound that he'd lost as was 36.8 lb when I weighed him just before this virus came to town. Friday: 34.0. That means 2.8 hard-won pounds got vaporized by this virus in just one week. I could tell he looked skinny, but man! The realization that we were losing so much ground on the nutrition front put us over the edge, and we started our next cycle of Cayston on Saturday morning.

The good news is that the Cayston seemed to kick in right away, and Lemon is feeling much better. He's tolerating his tube feeds again so with any luck over the next few weeks we'll at least fight our way back to where we used to be, nutrition-wise. I am grateful that it seems like after 3.5 years we've finally found a treatment that can work for Lemon and with any luck, keep him from being hospitalized quite as often. I'm grateful that, even though it seems distant now, spring is coming, and this cycle of Cayston will carry us through mid-March. If he can just sustain things on his own into April, we'll have made it through the winter.

I'm secretly hoping that we get at least one more snowfall before then, though--my Valentine's Day gift this year from Papa Bear was a deluxe new snow shovel (the man knows a his way to a woman's heart!). Lemon insisted that he needed a new shovel, too, which he selected himself. At the moment he's mainly been practicing by shoveling snow from the snow banks into the driveway, but I imagine with a fresh snowfall and some coaching I can get him to understand that there is a directionality to the process!

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