July 17, 2018

The Plan So Far

So Azer and I spoke with the attending pulmonologist. He says his lungs still feel full and is still having more of a productive cough than he expects to have at this point. She told him that his PFTs are still going up, and he sounded better while performing the test, and isn't bringing up as much mucus as before.



 She said that this infection might just be harder to fight but that it doesn't necessarily mean that the next time it will be this hard. We are used to finishing the course of IV antibiotics at home. She said the IV antibiotics given in the hospital are given more frequent and are stronger, and she'd rather him finish a full 14 days of aggressive therapy. She said if he still feels bad after Monday, they will regroup and try something else. If he feels better by then, we can go home with oral antibiotics.



The skin peeling has slowed down, but in some areas, it has continued. It is annoying him, but otherwise it isn't harmful.



Overall, he just wants to go back to having a normal summer, spending time with his friends and go swimming.

Sleep Study

A few months ago, Azer started using a Fitbit. Since he can track his sleep with it, he was noticing that he is far more restless when he sleeps than he should be. He also has been noticing that he will have periods of sleeping with his eyes open during the day. Since sleep apnea can happen as CF progresses, we decided to try to schedule a sleep study while he was inpatient.

They were able to schedule it for Sunday night. They came in, attached sensors and electrodes to his head, nose, arms and legs. The results came back and he does not have sleep apnea, but he sleeps so restless, he does not obtain REM sleep. I haven't heard if there is any help for this, but at least we know he is breathing well while he sleeps.