February 13, 2020

Still Not Feeling Great

Azer had his first PFT today since admission. It is close to his baseline, but he said lungs still feel very irritated. The hyper-saline caused so much irritation this morning that he coughed for hours. He was exhausted by the time they came for PFTs. He asked the doctor if he could either stop doing it, or do a lower percentage.

The night of admission, the nurse who tried to put in his IV didn't do it quite right, and it hurt him so bad, he was sweating. The IV team was able to put it in quickly and painlessly. The PICC team had to put his PICC line in on his other arm this time, as the arm they usually use is still sore from the PICC line last month. He had an IV and PICC line on the same arm that day.

Most of the tests for Aspergillus came back, and they are all lower numbers than he's had in years, so the Dupixant is working wonderfully. His viral panel was negative, so they are just treating the bacteria he has cultured in the past. This doesn't really give a clear answer on why he is so sick a month after his last admission.

Everyday, it seems he's had less and less energy. He has had no appetite at all. The antibiotics are upsetting his stomach very badly this time. He says he hasn't been sleeping well. Even though his lung function is up, he isn't feeling well overall. He just seems to be feeling worse since he got admitted. We are hoping that the Trikafta isn't causing his decline.

No comments: