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