Tracheobroncomalacia

Trachebroncomalacia is what Kaesyn was finally diagnosed with after the broncoscopy. I have done research to find out more about it but there really is not much on it. I am lucky to have found someone that has been going through the same thing. Apparently the condition is very rare, and very undiagnosed. From what I have read, it can be dangerous, due to many complications it causes, but in most cases, it resolves its self over time. I think that may be the most frustrating part. I swore that when we had answers and what was causing this I would accept it and be grateful for what it was. Now that we have answers and I know there is no treatment for it, and we have to just sit around and wait for him to MAYBE grow out of it, is very irritating. The thought of doing nothing when my baby has his coughing attacks, or lays there and does nothing because he cant breath terrifies me. I am still new to the thought, and hopefully over time I will be able to accept it more. I have made a group on a facebook for the condition, since like I said there is no support groups, info, or hardly anything on the internet about this. Its a bigger deal than I originally thought before he was diagnosed. And I guess that the tracheomalacia, and broncomalacia by themselves is more common, but having both is pretty rare, and Kaesyns airways being so narrow makes it even more almost unheard of. I know we will get through this, and I may be making too big of a deal about it, but its scary that we have to wait for him to get over it, there is a case of a 12 year old that never grew out of it that I found on a clinical study. But God has done many amazing things for my family and myself, so I am sure he has a reason, and he will do what is meant to be done, and there will be a great reason for it.