June 27, 2018

Sick Visit / CF Clinic

The Friday before Azer left with his youth group on a mission trip, he woke up that morning, and told me his tongue hurt and felt scratched up.

I was able to send pictures to the clinic that morning, and a few hours later they confirmed it was oral thrush, and sent the anti-fungal medication to the pharmacy.

Azer had a fantastic time and did as well as he could to keep up with his treatments during his mission trip. He told me mid-week that the schedule was not easy for a CF person to keep up with. He missed quite a few vest treatments due to how late at night they got in. By Thursday, he told me his lungs felt pretty sick, but he wanted to push through and finish the week. He didn't get enough time to do his Tobi or oral thrush medicine, but did most everything else and ate really well. He took the week off from his steroid nasal rinses, and ended up losing his sense of smell this week. He's hoping it comes back quickly now that he's back on it again.

When he got back home, Azer said his lungs felt pretty sick. When I listened to him, he didn't sound too bad, but had a few wheezes. Of course, perfect timing, his Vest ended up making horrible noises and needed to be replaced the day after he got home. Luckily, the Vest company was able to overnight us a new replacement machine!

Clinic: Azer had to get his annual Oral Glucose Tolerance Test today, so he was fasting since midnight. His height was the same as last time (he missed a week of growth hormones), and he lost about 3 pounds (not very concerning given how active he was last week. He was getting about 30,000 steps a day!) They drew his blood during vitals to test his fasting glucose level, which was normal.

Azer has been eating very well with the Periactin and as such has had changes to his stool and hasn't been absorbing his food as well as he could, so the dietitian came in to go over enzyme dosaging.

His PFT's were considerably lower than his baseline and lower than last month. The doctor listened to him and wanted him to do an albuterol treatment and then re-do PFT's and see if there was any difference. His FEV1 did go up about 7%. Azer told the doctor his cough never completely went away after the virus last month, but that his lungs felt much worse on his mission trip, but since he's gotten back home, they've gotten a little better.

The best course of action would be an admission to the hospital at this time, but we have already planned to be on vacation next week. The doctor felt like a quick admission for a PICC line would be pointless if he had to go back in to the hospital when we got back home. So, we are doing the next best thing: Hospital at Home: breathing treatments every 4 hours, antibiotics and steroids. The doctor warned Azer he needs to "get his butt in gear" (her actual words). We will redo PFT's before we leave, and if he hasn't improved when we get back, he will probably be spending a few weeks in the hospital on IV's.

The doctor told Azer to not feel like he didn't do a good job over his week on his own. She said the work he was doing combined with the weather and the environment he was in could be contributing factors to how his lungs are right now. They are running another virus panel, as well as a lung culture to see if he's growing anything other than MSSA. I will update as I find out the results.

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