Friday, September 23, 2011

Lung disease free are we!

I went to a viewing on Wednesday night for the husband of a former co-worker of mine. Her husband passed away in his sleep at an age way to young for something like that to just happen. It was sad. There were so many people there to pay their respect, most of whom I assume never even met the man. They were co-workers of the wife. There were people that I'm sure she'd only ever spoken to on the phone concerning a business matter that showed up because they care about her. I was sad for her. And I wondered, just for a moment, who would come out to a funeral if I lost someone I love. I know its not a good attitude to have, but when your kid has a terminal illness, a disease for which there is no cure, I can't help but have in the back of my mind the fear that I will lose him. My job as a parent is to keep my kids alive - feed them, nourish them, teach them, love them. I do all of that the best that I can, and I still might lose. I don't think that way a lot, but when something so sad as what happened to my former co-worker happens in my world, I wonder and I hope and I pray that I'm not going to be in that same predicament of trying to find comfort in such great pain and sorrow.

Drew had a hi-res CT scan yesterday. There was probably close to a years worth of debate over this with his doctors before we decided to go ahead and do it. They wanted to get a good look at his airways to see if he has any lung disease. Its mostly for benchmarking purposes, to see what it looks like now and then in a year and then in another year. The results weren't going to necessarily change any course of action or medical treatment plan, which was what caused my hesitation to do it in the first place. I get curiosity, I'm a curious person. But when it comes to putting my kid to sleep to satisfy your curiosity, I'm going to draw the line. I know that wasn't the case. I know that having the best possible look at Drew's lungs and understanding what they look like and how they handle or have handled certain treatments and whatnot will aid us in treating him in the future. And when we finally discussed a specific action plan based on the results of the scan, I was on board.

What they were looking for was bronchiectasis, which is destruction and widening of the airways, thus not allowing them to hold air appropriately and making it difficult to breathe. Its basically lung disease, which we all know is the culmination and ultimate cause of death with Cystic Fibrosis. Their hypothesis was that because of Drew's malacia, he isn't able to properly clear the bacteria laden secretions that CF patients have and he would show signs of early lung disease because of these chronic infections. We do his breathing treatments and airway clearance twice every day, but when Drew coughs, instead of being able to bring it up, his airways compress and collapse and trap the mucus in there. It is so critically important that CF patients keep their airways clear of this bacteria because this is what causes lung disease. Our plan was to start him on azithromycin 3 days a week if we saw bronchiectasis based on some newer studies about its benefits in reducing pulmonary exacerbations and preventing bronchiectasis.

Well, guess who was WRONG!!

We had the CT yesterday and the doc was supposed to call today with the results, but instead she called me about an hour after we left the hospital because she was so shocked and thrilled with the way his lungs look. There was no evidence of any bronchiectasis or lung disease, or anything of any real concern. They saw some "streaking" which they've seen in his x-rays in the past, but assume that that's just some mucus, which all CF kids have in their airways all of the time anyway. Nearly 70% of 3rd olds with CF show some lung disease on CT scan. I'm quite delighted to know that at just half that age, my boy is currently free from that. I know it will come. I just hope its slow and mild and that everything we're doing will continue to grant him good health. And I'll keep emailing and visiting our congressmen and women and encouraging them to support us in our fight so that a cure is found before we have to watch CF rear its ugly head at us.

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