TestifyToLove
New member
We are passing a cold around the house. This afternoon, I noticed M is coughing more than usual. He has an occasional cough that is mostly the hour after he does hypertonic every day but otherwise rare.
Never thought I'd pay so much attention to a cough before him. I can't tell you how many times my 13 year old has coughed today. But, I know exactly how any times M has coughed, and its way more than usual...and its Thursday, which means tomorrow is Friday.
He's on Zithro prophy and Tobi. He cultures mucoid PA at this point. End of Feb/first of March, we did a round of Bactrim when nothing else would get rid of a persistent cough. Since he'd just had IV abx in Dec, the doctor wanted to try one last ditched effort for an old oral option and it cleared him up.
I'm increasing his vesting to 3x/day over the weekend and I'm going to watch him. I know he's got the same cold 4 siblings already have. And, he's blown through 2 colds since his last course of abx. But, if he's not better by Monday I'll have to take him in.
Blech! He's been doing SOO well, and we've worked so hard to address his behavioral issues, getting repite, getting him diagnosed for Autism, trying to push for his therapies for his Autism. Now, we're back to basics with him. Watch the cough, help him move it out. Vest him. Let his siblings tickle him whole bunches to move things out. And, watch it. Hope if it hits abx that the doctor will try an oral and it will work. Hope if he needs IVs that the doctor will remember his other issues and still be agreeable to in-home therapy.
Blech! For months he has said, "Is my cough getting worse?" everytime he coughs. And, everytime he coughs I've just said nope, you have CF you are going to cough. It just is. Today, its worse again.
Not a happy mama tonight! Just mad at this disease and a little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.
Never thought I'd pay so much attention to a cough before him. I can't tell you how many times my 13 year old has coughed today. But, I know exactly how any times M has coughed, and its way more than usual...and its Thursday, which means tomorrow is Friday.
He's on Zithro prophy and Tobi. He cultures mucoid PA at this point. End of Feb/first of March, we did a round of Bactrim when nothing else would get rid of a persistent cough. Since he'd just had IV abx in Dec, the doctor wanted to try one last ditched effort for an old oral option and it cleared him up.
I'm increasing his vesting to 3x/day over the weekend and I'm going to watch him. I know he's got the same cold 4 siblings already have. And, he's blown through 2 colds since his last course of abx. But, if he's not better by Monday I'll have to take him in.
Blech! He's been doing SOO well, and we've worked so hard to address his behavioral issues, getting repite, getting him diagnosed for Autism, trying to push for his therapies for his Autism. Now, we're back to basics with him. Watch the cough, help him move it out. Vest him. Let his siblings tickle him whole bunches to move things out. And, watch it. Hope if it hits abx that the doctor will try an oral and it will work. Hope if he needs IVs that the doctor will remember his other issues and still be agreeable to in-home therapy.
Blech! For months he has said, "Is my cough getting worse?" everytime he coughs. And, everytime he coughs I've just said nope, you have CF you are going to cough. It just is. Today, its worse again.
Not a happy mama tonight! Just mad at this disease and a little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.