On Friday, we had our telehealth visit with our new doctor. Since this was our first real appointment with him, it took approximately forever. And, I have to say, it was so much better to do it by phone rather than trapped in an exam room with a bored 6-year-old. The doctor and I were able to go over things in a lot of detail, and Papa Bear was able to listen in and chime in with questions as well.Focusing on the highlights, since all you readers are way more up to speed on the details of Lemon's history than his new doctor, here's the scoop. The new doctor is willing to concede that Lemon really and truly is allergic to azithromycin, so we can't use that as an anti-inflammatory as we had hoped. This is of course a real shame since our big goal post-bronchoscopy has been to reduce the amount of inflammation in Lemon's lungs. The only other alternative available at the moment is high-dose ibuprofen. And when I say high-dose, I mean high dose. Like 600mg, twice a day, for a kid Lemon's size (which, by the way, is 57 lb now!). The doctor agreed that it didn't sound like an appealing plan. So, our best hope is to improve the efficacy of Lemon's airway clearance, keep his exacerbations under control, and wait for Trikafta to be approved for kids his age.
The doctor conceded that this is not a very satisfying plan, and I have to say, it's not. We went from sticking with our current plan because we didn't know there was a problem, to sticking with our current plan because we know there's a problem but we have no alternative. I'm not sure this is exactly what I imagined progress would feel like. Still, we will be trying to teach Lemon how to huff-cough (having attempted to teach him to tie his shoes, I'm not exactly anticipating rapid results) that at least we're doing something more to try to help him. On the plus side, our dietitian was thrilled with Lemon's weight gain, which has been a big upside of this whole "Safer at Home" period. Amazing what eating 18 separate snacks per day will do for one's weight.
Meanwhile, speaking of Safer at Home, here we still are. Home school continues to be a rather improvisational affair in our household. But, the kids are still happy and they are doing so much imaginative play these days that I have to imagine that's building some sort of cognitive skills. We had a stretch of nice weather where I perhaps over-optimistically planted some seeds in our vegetable garden, so we'll see what happens there. If worst comes to worst, I do have more seeds.
