Thank you for the welcoming. My son is 8, he also was diagnosed at 2. I believe he is colonized. Every sputum culture done, always turns up that the psuedomonas is there. I think it has gotten worse in the last 6 months. I am not able to keep him well.
He plays soccer, jumps on the trampoline, and does anything he possibly can to scare me..LOL.
He has lost 20% of his lung function in the last 6 months. He has started seeing another specialist at Riley's Children's Hospital in Indianapolis, IN.
The reason I am so scared for him is because he is on the xopenex, hypertonic saline, pulmozyme, tobi, and ciprofloxin. I just do not understand it.
In the last year he has been on Tobi and pulmozyme constantly. He has been in the hospital 2 times in the last 6 months, and if his pft's do not improve by friday, he will be placed in the hospital yet again.
He has a port cath. and a g-tube. The last 2 weeks have been very rough. I am trying to do everything I can to keep him well and active...but his cough is getting worse, he is running low grade fevers and everything hurts.
Now, I may not be an "expert" on CF...but it seems that something is very wrong....very, very wrong.
I hate it when he has to stop doing something so he can hack and cough until he throws up. I am having trouble staying positive.
I keep hearing about all the CF teenagers that die. It is a relief to talk to someone like yourself. It keeps me hopeful, and yet I am still so scared.