Sinus CT

I had a great meeting yesterday with Senator Portmans Chief of Staff for SW Ohio. She was a really nice woman who seemed very compassionate and caring. She took the time to listen to my talk on why having Senator Portman with us on the issues facing the Cystic Fibrosis Community would be so hugely beneficial to the health and well being of everyone within the CF Community. She took lots of notes and asked a handful of questions, and I felt like I made a difference. Every time I have the chance to share our story I am going to jump on it because the more people who know and care, the better off we all are. Hopefully I will have another advocate in Senate...or at least someone who works for him.

We also learned yesterday that the new CF drug, Kalydeco, is targeted for approval by April 18th! I had talked to Drew's doc last time we were in about wanted to get on that asap to see if it would help him. There are a couple of little obstacles we will have to go through, the first being the age approval for the drug. It is being evaluated for use in kids over the age of 6. Thats not to say that it won't work on younger patients, just that it was never tested on them so they don't know the appropriate dosage and whatnot. There are new clinical trials coming up, both on kids as young as 2 with the G551D mutation, as well as other younger kids with mutations within the same class (Drew!). I don't know if it will be a blind study or not, one where someone is given a placebo, but if it is then I hate to say that I don't want to participate. I want to get on the drug before we have any lung damage. I do understand the importance of these tests and trials, but I hate to think that signing up for a trial could mean another amount of time without something that could potentially fix him. Nothing specific has been released on the details of the clinical trials yet but as soon as they are I'll be all over it.

I finally called Drew's doctor again today about the chronic funky gunky nose. They decided they wanted to do a sinus CT scan to make sure he didn't have a sinus polyp or anything. Any infection that he did have should have been treated and cleared up by the antibiotic that he was on for 2 weeks, or at the very least alleviated by the nasal steroid. None of that has made any difference, and the poor boy brings me the big ol' suction bulb thing to clear him up several times a day when he just can't get relief. He's literally a snotty mess. The bright side is that it has all remained in his head and not moved to his chest. The bad news is that he could need a sinus surgery. I guess we'll see what happens on Thursday. More news as it breaks!