February 17, 2020

Staying Another Week

His PFTs were exactly the same as last week. He feels like his lungs haven't improved since Thursday. They are better than the day of admission, but he said they still feel irritated. He feels discouraged that his numbers are not higher and that he's not feeling better than he expected to be by now, even with two strong IV antibiotics. They are still causing an upset stomach, and he still hasn't been able to eat more than few bites of food a day. 

We made the decision to stay in for another week instead of going home on IV antibiotics. He is getting good lung therapy with the IPV, which we don't have the advantage of using at home. We are still struggling to get formula and G-tube supplies at home, so he will have time to get his weight up with extra formula while admitted. He missed a dose of Trikafta last week, and noticed the effects quickly, so it is doing a lot more for him than we realized. There still isn't a clear answer on why he got so sick only a month later, without anything new showing up in his cultures.

In mean time, he has been entertaining himself with Legos, crafts, and has been on the Red Balloon network a few times (a channel broadcast in the hospital). He even got to meet one of the Harlem Globetrotters. Azer would appreciate any type of arts and crafts that would keep him occupied.

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