February 19, 2020

Admission Questions

Yesterday, Azer and I had a long conversation with the CF doctor for this week. She said he is on the path to a bronchoscopy, but not quite there yet. Azer asked why they are treating something when they don't know what it is. So she explained that they are treating what they see. She told us we might not see anything different culture from the bronch. We brought up the possibility that the hypertonic saline might be irritating his lungs, so she said it was fine to stop that. She said she would order a PFT for today, pre and post Albuterol.

Today Azer blew only one point higher after inhaling Albuterol. The doctor was a little disappointed with the results, as she was expecting to see a higher number after Albuterol. She thinks his lungs have a strong inflammation component and that it will take time for them to calm down. She said before gene modifiers, they would put patients on a very high dose of ibuprofen to reduce inflammation and their lung function would improve. Azer coughed out some very dark mucus that she saw, and she believes it's old mucus still coming out. She said during bronchs, they flush the lungs with saline, and tons and tons of old mucus comes out at once. She said that Trikafta is likely doing the same thing, but a little at a time, and it's coming out as if in layers. It seems difficult to get much information on whether the off and on fevers and lung infections are due to Trikafta. 

So far, the doctors are undecided on whether to continue antibiotics for a third week. His appetite seemed better last night, but his GI system as still been very upset. They may start Flagyl today.

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