September 22, 2020
September 21, 2020
Today was a day of a lot of uncertainty. It was doubtful he'd come home today, as they were still waiting for his Voriconizol levels to come in. They came in late this afternoon. The levels are too low, so they are increasing the dosage orally.
September 18, 2020
The doctors started Azer on an antifungal to treat the aspergillus. The ID said that if the aspergillus turned resistant, that he would be ineligible in the future for a lung transplant, so they need to make sure they get all of it. It still is a mystery why it hasn't shown up before. The blood test for aspergillus was negative but different type of test came back positive for a fungal infection. They stopped one of the IV antibiotics and added an oral one. He is staying admitted for sure through the weekend.
|PFTs on Thursday were a few points higher than Monday. The antifungal medication is already causing his vision to be blurry, so they are having to run it slower.|
September 15, 2020
Yesterday, since Azer's lung function was not better, they made the decision to move ahead with the impedance study. It was very uncomfortable for him when they put it in, and for hours after. They did an x-ray to make sure it was in the right place, but they had to adjust it again. It made breathing treatments harder, as coughing made it move around and he could feel it. After he ate something, he said it felt a lot better, but he could still feel it when he swallowed. The device attached to the catheter had buttons on it, and he was instructed to push one when he took medication, another when he ate, and another one if he ever experienced reflux or heartburn. The pH levels were real time, so he was kind of having a bit of fun seeing if what he ate or drank changed the numbers.
September 14, 2020
The doctors wanted to start Azer back on Hypertonic saline. They saw some plugging in his lungs on the CT scan, and wanted to try to work on clearing it out. They started him slow on 3% hyper-sal and then tried the 7%. He is doing well with it. Luckily this time it's not causing him a major coughing fit. He is continuing to do the IPV three times a day.
September 10, 2020
Azer had a CT scan yesterday, and it didn't show any changes from last year. They plan on keeping him on IV antibiotics until his PFTs are back to normal.
September 8, 2020
Azer feels like his lungs are almost perfect. His PFT does not reflect that, as it is only a few points higher than last Thursday.
September 5, 2020
Azer's lung function is improving, but his oxygen is only optimal right after breathing treatments or physical therapy. Azer says his lungs feel clear, but that his lungs or body are sick. He isn't confident going home with IVs and feels like it's better to finish out the course at the hospital. We are still hoping they can figure out why he keeps getting sick over and over.
September 2, 2020
Azer is feeling a little bit better today. He has gone to PT twice so far, and he feels like that is making a difference. His oxygen was stable last night, so they are only spot checking it today. The antibiotics are making his appetite pretty poor. His cultured showed rare growth of some type of fungus, so he's probably not going it, but the cultures are still pending. His IGE is again at an all time low, and is within the normal range for someone who doesn't have CF. We are definitely not comfortable with going home on IVs at this point, not knowing what is going on.
Azer had a video appointment with his psychiatrist today. He has had a very difficult time with any stimulant he has tried for his ADHD. It seems to cause a cough, excessive sweating and an upset stomach. The psychiatrist prescribed a non-stimulant, but he hasn't had a chance to start it yet, because he got admitted. She was able to video chat with the doctor in his room, and ask that he could be started on it while he's in the hospital, since he still needs to stay up to date with his schoolwork.
Schooling online has been difficult, as he is often too busy with treatments to check in at the scheduled time. After calls with about 4 different high school staff, it sounds like he will be counted absent until the end of the semester, when they can officially enter the paperwork from the hospital.
September 1, 2020
Azer's oxygen was low last night, so they put him on supplemental oxygen over night. He said the nasal cannula was really uncomfortable. His oxygen saturation has gotten better during the day today.
August 31, 2020
August 13, 2020