June 5, 2018

CF Clinic

About 2 weeks ago, Azer suddenly started to sound congested. Oddly enough, it started during his week off of Periactin. The week off of Periactin, his seasonal (year round lol) allergies hit him hard. During Memorial Day Weekend, he began to sound so congested, we all wondered if it was time for an admission. He also began to cough up brown mucus. The on-call doctor prescribed some oral antibiotics to see if that would help. Since then, his cough has improved slightly, but he says his lungs have stayed full.

Not surprisingly, his PFT's were down today. The Pulmonologist said that his small airways were the same as they were last time, so whatever is going on with him is unlikely to be ABPA (our worst fear, as it would put a damper on summer plans). She said he should finish his course of antibiotics, and start Tobi Podhaler while we wait for his culture to come through. Even if it isn't Pseudomonas, the Tobi should also help out with the Staph he normally cultures. She heard some mild wheezing in his lungs. They also took a nose swab to see if he's culturing a virus.

He put on some weight, so the Liquigen is helping him out. His appetite is very good when he's on the Periactin, and he has been enjoying a healthy appetite, although it has come and gone since he's been sick. He is also growing!

Azer is going on a week-long trip with his youth group. This will be the first time he is fully responsible for all of his treatments and medications. The doctor went over things that were the most important (such as staying hydrated and ways to add sodium) and she went over a few ways to make his treatments easier, such has medications he doesn't have to take during that week.

Azer is still taking Dulera and Qvar. Well, apparently Qvar has stopped making the inhaler type, and is now coming out as an inhaled powder. Since it's already been ordered, and the doctor feels like he's old enough to be able to inhale it properly, he can try it out and see if it works for him. If not, we have to go back to Flovent.

- Update: Azer's viral panel came back positive with metapneumovirus. His lung culture only came back with MSSA. He is doing great with the new Qvar, and doesn't really notice a difference in how it feels, other than this Qvar is not taken with a spacer.

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