Thursday, July 22, 2010

Throw me a bone

I'm ready to catch a break. We went to the ENT today and she really feels that Drew has Tracheomalacia or something else in his airway making the sound that we're hearing so we're going to set up a bronchoscopy. She said it will only take about 30 minutes for her part, but since they're going in, the pulmonologists want to get a sample of the mucus from way down low in his lungs and their part will take an additional 30. Add the time for prep and recovery, he will be away from us for probably about 2 hours. I hate that damn surgery waiting room.

We have a clinic appointment on Monday and I'm anxious to ask our doctor what tracheomalacia means in terms of the CF. I'm a little worried that it won't be good news. I'd even hope for no news, meaning that it has exactly zero affect. However, I think what I'm going to hear is that its a problem because he can't clear that thick mucus affectively. That awful, thick, sticky mucus that bacteria just loves to grow in. The ENT said that if it is tracheomalacia that he should grow out of it by the time hes 2 at the latest. But in my CF thinking head, thats 2 years of bad bacteria not being affectively cleared from his airways which can't be good news. I hope thats not the case. I really really hope its not.

This is what I fear. If they go in and they do determine that its tracheomalacia, I fear we will have hospital stays with every cold. I fear we will be doing airway clearance 3-4 times a day, with extra albuterol and pulmozyme and maybe even courses of inhaled antibiotics. I fear that its just more time spent on treatments and in the hospital where he can't grow and play and exists the way any other kid can. It means less time for our girls. It means more financial stress. It means more heartache.

I hope I'm over thinking this all. I just want to know what the worst case scenario is. I don't want to pretend everything is fine. I'm worried about this. This event. This whole thing. I'm just ready to catch a break.


  1. Praying for you guys! I know this is not the news you wanted....we'll just have to pray this this will not effect his CF...

  2. praying for you all also.....cant wait to see you next week:)