CF Clinic

After the last sick visit, he was prescribed some pretty tough antibiotics along with a brief time on steroids. His cough improved temporarily but his cough came back again. So this was a follow-up and sick visit.

He gained a few pounds this time (despite his poor appetite) which is fantastic. They are still pushing for more calories because his growth is just so slow lately, and his height percentile is tapering from where it used to be. We will be switching to a higher calorie formula, which should push a few more calories per ounce.

He has been having a lot of issues with reflux, but our GI doctor decided a few weeks ago to try a different type, and it seems to be working. We may have to try a course of Flagyl soon if he still continues to have issues. We are also increasing his Bethanechol which helps his stomach move food along faster.

His salt was a little low, and I will be adding salt to some of his G-tube feeds as it is a struggle to get him to drink one (1) bottle of Gatorade a day.

His Fev1 was 79%. I know it can be much higher. So, we had a choice. Do another long course of oral antibiotics (the last course just cleared all the bacteria out of his colon and his very hard on his stomach, which means lots of time in the bathroom), or do a course of IV antibiotics to clear him out. Doing IV antibiotics seems to be the best choice at this time. It's been a few years since his last tune up, so it is needed. The good news is he has only been culturing bacteria that responds well to broad spectrum antibiotics. The plan is to wait until school is out, go in for the PICC line and some X-rays, and then do the rest of the IV antibiotics at home. Hopefully this will clear all the junk out of his lungs so he can have a summer free from antibiotics, steroids and IV's!

We are still participating in the CF walk this Saturday. It will be rain or shine, so I hope to see everyone there!!!

Sign up or donate here! http://fightcf.cff.org/goto/joggersforazer

Sick Visit

At the last clinic visit, Azer was prescribed oral antibiotics for his lowered PFT's and increased cough. They worked quickly, but about two weeks off of them, his cough came back along with some wheezing. After increasing treatments, we weren't seeing much of an improvement. Last Thursday, I emailed the clinic, and they were able to see us the very next day. (Sometimes it feels like we are always "on call" as far as CF goes!)

His vitals were great, but his Fev1 was down to the lower 70's. We are doing a course of oral antibiotics and steroids. If there isn't improvement at his next clinic visit in a few weeks, it might be time for IV antibiotics. It's been a few years since his last admission, so we've been pretty lucky.

His reflux has been horrible lately. It has been interfering with his appetite and hasn't helped him trying to cough this junk out. We will see the GI doctor at our next clinic appointment, but in the meantime, they've switched him to a different reflux medication and  a higher dosage.

Also wanted to let everyone know that it is 24 days until the CF walk. It will be on Saturday, May 30th at the Vitruvian Park in Addison. Check in time is at 8am and the walk starts at 9am.

Click here to donate or join our team, Joggers for Azer! 

http://fightcf.cff.org/site/TR?team_id=29213&fr_id=3453&pg=team