March 20, 2020

CF Clinic - Hospital Follow Up

The CF clinic has been calling previously made appointments to see if they can be cancelled. Azer had a mild virus at the beginning of the week when they called, and decided to keep his appointment, since his cough was much more frequent. It improved over the week, and today it was much better. It was hard to tell if any remaining lung irritation is from allergies, but given the weather, it's definitely possible. The clinic building was fairly empty, so it was easy to stay away from others.

Azer lost about 4lbs since he was discharged. His appetite hasn't been that great lately, but the doctor said she isn't worried, as he's still above 50% for his BMI.

The doctor was very pleased with how he sounded today. This is the first spring Azer has experienced with Dupixent, the allergy shot. Usually, he is feeling congested, wheezing, and close to needing antibiotics. The Trikafta really seems to be helping as well. He hasn't coughed up mucus during treatments since he was discharged from the hospital. He says it's weird to cough and not have mucus come up. He said sometimes he'll cough on purpose because it feels strange to not be coughing all the time. 

Azer's PFT today was one point lower than it was two years ago. He hasn't been able to blow that high in a long time, and this is also considering the computer is basing it off of his predicted size for his age (meaning the computer expects him to be nearly adult sized, based on his age). Azer was pleased to finally have a great clinic visit after nearly 6 months of being off and on sick, and not having a clear reason why. 

Azer has been staying busy playing Xbox and practicing hitting and pitching in the backyard. He has also been lifting weights more often now that he's feeling so well. If anyone wants to play Xbox with him, his username is SaltySP#6415

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