You said that you searched it online and it says all that stuff about leading cause of death, I find it's easier (mentally) not to search stuff like that because they tend to leave out the fact that pseudomonus is treatable in CF, meaning there ARE medications that help to erradicate it or atleast lessen the symptoms. I had pseudomonus my whole childhood and I was only in the hospital once. However I got Cepacia (TOTALLY UNRELATED) so that overtook the pseudomonus (however cepacia is worse so you wouldn't want that to happen). Anyway, my point is that SO many people with CF colonize psedomonus and other bacteria and they are able to manage with the proper therapy, I have had cepacia for over five years and I'm as healthy as I was when I got it because I do everything I am supposed to plus exercise. I would not call any colonization a death sentence either. Just make sure she does her abx religiously as prescribed, keep up on her airway clearence, doctor appointments, if her pft's are declining then catch the infection before it gets worse with abx.
and I agree with jeana DON'T put her in a bubble! She is only a child and you need to let her enjoy her childhood without sacrificing play time for the fact that she might catch something. Use hand sanitizer after playing in the dirt, have her practice good hand hygeine, but don't put her in a bubble!
and I agree with jeana DON'T put her in a bubble! She is only a child and you need to let her enjoy her childhood without sacrificing play time for the fact that she might catch something. Use hand sanitizer after playing in the dirt, have her practice good hand hygeine, but don't put her in a bubble!