January 21, 2020

Week 6 and Clinic

Azer still felt good even through the switch to oral antibiotics. Going home without a PICC line was worth it, as the very next day he got discharged, it actually snowed, and he had a blast sledding and playing in the snow.

He hasn't been coughing as much, and isn't bringing up much mucus during treatments. He has gone back to doing hyper sal twice a day. He coughed up sort of bloody mucus one day and other days, dark mucus. His cough continued to be clear even after he finished his antibiotics. He hasn't been able to laugh without having a cough attack in a very long time, but this week, it has gotten so much better. Through out week 6, he got off and on pain in his chest, and he couldn't tell if heart pain or lung pain, but it was most likely a mucus plug moving out.

Insurance is requiring us to switch his Dupixant to another pharmacy or they won't pay it. We have been fighting to get it, and unfortunately he ran out of it and has been experiencing increased mucus and allergy symptoms, which proves how much it was actually helping. When he was admitted, they tested his IGE levels, and they were lower than they have been in 8 years. The Dupixant has helped immensely, so it is frustrating to not be able to have it right now. They are also requiring us to switch his Trikafta as well, and he has a little over a week left, so I am really hoping it gets transfered before he runs out. The doctor assured us that other people with CF that have struggled getting their Trikafta due to insurance have done pretty well being off of it for a week. We are also having a hard time getting his growth hormones covered, as he hasn't grown much at all in the past year, and according to the insurance, there is no reason for him to continue being on them. 

Azer has been continuing to do 6 cans of formula a day, and he has slowly been regaining the weight he lost. He feels like the Remeron is helping, as he actually has an appetite now, even when taking his ADHD medication. He has had some painful reflux since he started eating solid food though. The GI doctor is increasing his enzyme dosage and also temporarily doubling his Nexium dosage.

His PFTs were lower than when he was discharged. This is most likely due to his allergy symptoms from not having his Dupixant shot. One thing that was different on the test was that normally the slope of his exhale shows lung restriction. This time, it was showing less lung obstruction. The doctor was so pleased with how he sounds, she said he can stop taking one of his inhaled steroids. There is a study starting soon that will show what other medications people with CF can stop taking. They are doing a virus panel to see if his dark/greenish mucus is from the rhinovirus still lingering. The doctor said the virus is presenting in a flu-like way this year, making even healthy people pretty sick. If his lung culture shows anything other than MSSA, she wants him to start I
inhaled antibiotics for a month. 

Azer had his annual PT evaluation, and his capacity on his test was lower than last year. He also has regressed on his posture so, we may need to start out patient PT again. Azer has had some tendon issues in his left wrist. It's not too severe, but he does have to hold off on some pitches for a while. The doctor said it's possible that the antibiotic he was on in the hospital caused this to happen. 

Azer mentioned to the doctor that he has had numb and tingly fingertips since starting Trikafta. The doctor figured out that it is aquagenic wrinkling, since the tingling is happening when his hands are sweaty. In some people with CF, aquagenic wrinkling can even be painful, which Azer has experienced when swimming. The doctors took note of all the Trikafta experiences, good and bad, as it helps Vertex see how it affects everyone differently!

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