Yesterday was Azer's follow up visit. As is common for any one, even without CF, Azer has struggled through the summer with keeping a schedule. Now that school started again, he's been trying to figure out how to balance school, work and CF at the same time. This is an issue for adolescents with a CF, gaining independence and managing life and CF throughout highschool and college. Unfortunately, his weight has fallen quite a bit over the last month as he's hasn't been doing his overnight feeds consistently. His lung function also fell again, so they want to see him back in a few weeks. The clinic is trying to work with him to be more consistent with everything to prevent him from a possible admission. His pulmonologist is trying to make breathing treatments easier on him by allowing him to do some of his nebulized medicines once a day, if necessary. Overall, he is still doing well with the Tobramycin, and hasn't had any fevers.
Azer has requested several times during hospital admissions to get a new G-tube button. For whatever reason, they couldn't, or wouldn't do it. We've struggled to get them from the DME company as well. He has had the same button for well over a year. They sent him to the GI clinic after he was done with the CF clinic. They helped him put in a new button, which was unnecessarily painful due to the button being so old. The GI nurse said she will be making sure that he gets a new button sent asap.
Azer has started to do a clinical study that studies breathing treatment adherence. It is a long term study that lasts months and keeps track of how many nebulized treatments he misses. He completes surveys from time to time throughout the study, and he even earns money for completing tasks!
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