Oh, where to begin

Lots going on around here. Sorry for the lack of updates, I really haven't felt like writing lately. I should probably rewind to Caleb's latest pulmonology appointment. He had a lung CT at the end of January and our follow up appt was the 2nd week of Feb.

I won't go too much into it, but his doctor pretty much told us he has the lungs of an old man. The three biggest concerns are that he already has pulmonary fibrosis. He also has some pretty large pneumatoceles. And his pulmonary function tests show he has very decreased lung function. She said that his PFT's directly correlate with his CT and he has little reserve, if any for an infection. She is also concerned about his chronic tachypnea (fast breathing). He breathes about 40 breaths per minute when he's resting is even faster when he's active. (Normal for his age is 20-30. I have been concerned about how fast he breathes since we brought him home from the NICU, but no one else seemed to worry about it until now!)

However, she still cannot believe how active and seemingly unaffected he is by all of this. You'd never know (unless you were watching how fast he breathes) that his lungs are truly that bad. He is a basketball maniac lately. He will "shoot hoops" in the basement nonstop for nearly 30 minutes without any trouble.....

She wanted him to start using an Advair inhaler. But, his pharmacist informed me that there is a potential bad drug interaction between Advair and another med he's on. (I am so irritated that his doc didn't mention this to me and then wouldn't call me or his pediatrician back to talk about alternatives.) And at this point, we are not willing to risk him having sudden death from a lethal heart arrhythmia....

Anyway, we have some big decisions to make in the upcoming weeks regarding the plan for Caleb's medical care. Please keep us in your prayers that we can make the best decision for him.