A Logan Update

I love that I can measure his growth by how long his PICC lines get. I guess that's weird though, but just incase you were wondering- it's 38cm from the inside of his upper arm all the way to his heart.

We had an "okay" visit and I'm using that term lightly.

The PICC line did come out. Hooray! Yet for some reason now that I can sleep, I'm wide awake. (could also be the cold medicine I took)

We repeated his pulmonary function tests (PFT's) and there was very minimal improvement. The doctor came in and the discussions began.

Nothing (repeat NOTHING) grew on any of his cultures. Not even an eensy bit of staph. So honestly we could've discontinued his IV meds a long time ago. There wasn't anything for them to kill, and aparantly not the reason he was having difficulty with his lung capacity.

Now things get a bit more confusing, as a new problem gets drug into this one. The doctor is starting to think Logan may be more asthmatic than we'd originally thought. Logan was on an inhaled steriod for years, but was taken off last year because they were worried about his height. He weaned off and seemed to be fine. His last PFT was while he was still on them however, and was at 100%.

Now he's hovering around 70-80%. The doctor prescribed a different inhaled steroid, and we will repeat PFT's in 4-6 weeks. If they improve, great, we have it fixed. But steroids can stunt growth, and his height is already a concern. Thus the hight issue- so a bit of background for you:
Height in CF kids is more about lung capacity than asthetics. The taller you are, the more lung tissue, and therefor volume you have. The better you breathe. If height/ growth problems aren't corrected by age 13 (or so) then it's nearly impossible to make up the lost height. The damage is done, and it's not reversable.

Logan is nearing 11 and a half, leaving us with only a year and a half or so to work on this issue. So we are now adding an endocrinologist to his growing list of specialists. I meet with him in about two weeks to go over Logan's growth trends over the span of his life. He'll also factor in the heights and growth trends of the rest of our family, since we are all tall, in theory he should be also.

While the fix seems simple enough, growth hormones have their risks too, many of wich I'm not familiar with. I guess right now all I can focus on is what I do know and can do... and that's work on getting his PFT's back up to 100%.