Here's the deal

In the middle of June, I wrote a post about Drew's clinic visit and declining lung function. His normal range is mid 90's. At our quarterly check up, his number was down to 85. Before we left for Philadelphia he had dropped down to 79. We decided to treat him with 2 weeks of an oral antibiotic to see if that would help him, thinking that there is probably an infection in his lungs (there's always an infection in his lungs, like literally, but its not always causing a problem), and planned to retest him upon our return. Well, we returned and his lung function is still at 79.

So the big question is what to do. Normally, I would be on board for treatment. But normally he would be "sick" in the more traditional sense - increased cough, decreased appetite and energy level. And none of those things are there. I've used my Orchestra data to tell the story of his health time and time again, and i'm coming up short this time. There is no cough, and there hasn't been for months. His weight is better than its ever been, and his appetite remains unchanged. He is sleeping well and generally happy. Yet his lung function is going down. His doctor suggested that sometimes kids this age aren't able to articulate when they can't quite take as deep a breath, or when they're struggling to clear secretions when they have a more subtle infection going on, stuff that may be less obvious to my naked ear. But I feel like he would have something going on that I would notice, anything, and I don't. Sometimes people with CF just need a tune-up, and I hate prolonging the inevitable if that's what needs to happen. The thing is, I'm not convinced that's what needs to happen. I don't know what the problem is - an infection? increased inflammation? allergies? reflux? I don't know, and the only way that it would seem that we can figure that out is to try different treatment options to see how he responds to them and what makes him better.

The current plan is a steroid burst to see if there is inflammation that we can get under control, and retesting his lung function on Monday morning. We also have an appointment to have a PICC placed on Monday morning following the PFT to start two weeks on IVs if his numbers aren't up. Hopefully one of these things work. Normally I'm annoyed when people try to give me suggestions for how to treat him because I normally feel like I have a pretty good handle on him as an individual, but this time I am at a loss. I don't know whats going on. I don't have data to support any theory of illness or allergy or other inflammation otherwise. I'm open to ideas, thoughts and suggestions so please do send them my way if you have them. Stay tuned!