Hi everyone ~
Oh my goodness, Monica, how crazy. I'm sorry Paige is back in the hospital. It must be so hard to be so far from home to be in the hospital so you can't even run home for a quick errand or break. Have they given you any idea why her numbers are so up and down? That seems strange to me, but then Sarah's numbers typically stay in the same general range, will go down about 10 during an exacerbation then back up to her normal range. However, that normal range goes down by a point or two every year.
Hang in there.
So...we're going home Monday and Paige had her follow-up PFT today.
Oh geez, that is so frustrating, Monica. I can't imagine all that treatment and stress for no significant change. ARGH!
When the attending doctor did rounds today, I mentioned this.
Ok, that sounds so frustrating to me, Monica. Maybe I'm reading it wrong, but it sounds like you expressed concern about not much change and it's just being blown off or excused. Am I reading that right? All they EVER talk about with Sarah's PFTs are FEV1, so I'd have to go look at her printouts to tell you any other numbers. They do comment on her small airway clearance, mostly as a "well it went up so she responded to the Albuterol," but that's about it.
Sorry Monica....hopefully things will get better.
It's interesting to me that different clinics focus on different things.