January 30, 2015


Azer is still on steroids... a very lose dosage every other day, but still on them. His IGE levels are slowly dropping, and we are still doing labs every other week.

The day before yesterday, I noticed he might be coming down with a virus.  Last night, after his evening treatment, he had a wheezing noise in his upper right lobe that was so loud, you could hear it without a stethoscope. I called the on-call doctor who didn't have much advice to give other than to continue to do treatments or take him to the ER. He was coughing hard enough he threw up, so I figured rest would do him good. I know he didn't sleep well. Today, he had a fever, and was nauseous, but the worrying thing is his cough. It is very congested. Luckily, I don't hear much wheezing. I have been doing CPT every few hours to try to relieve him.

I don't know what exactly has changed in him, or his lungs lately. Perhaps there is still remaining inflammation from the ABPA. But this past year, whenever he's gotten sick, the wheezing can be terrible. It can be so loud that he needs a fan in his room full blast so that it covers up the noise so he can sleep. I've been getting a sense, for the first time, that Cystic Fibrosis and that horrible mucus is just so hideous. It's just horrible how quickly his lungs can get full and irritated seemingly overnight. That we can work for months and months getting him to gain several precious pounds, and one little virus can take it away in a week. While everyone else's kids get a cold and stay home for a few days and be perfectly fine, he has to be on antibiotics and steroids for weeks, sometimes months.

I just know we have to keep working hard, doing breathing treatments, CPT, running, praying... whatever it takes.

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