We are home. It was a amazingly busy week. We will get full reports from all the doctors and recommendations of treatments next week by Thursday at the latest. The only thing that takes longer than that is the genetic panel, which will be 4 weeks.
We saw over 20 doctors and had lots of testing and procedures done. Cohen did AMAZING after anesthesia, woke up like a champ with no trouble. I can't tell you the relief. It really makes me realize how much stronger he has gotten.
The Aerodigestive team, which was the main reason we went there, was made up of an ENT, Pulmonologist, and a GI doctor. They all 3 went in with different scopes and looked at the entire airway, lungs, G tube site inside, stomach, and more.
Most of the news we got from this was really good. Cohen's airway has grown and is much closer to the right size, they downgraded him to a grade 1 stenosis, from a grade 4. So this is good. The left vocal cord is still paralyzed, and they do not believe it will return function. The right vocal cord is working hard to make up for both, which is great. He could possibly have surgery down the road (after age 8) if he has a problem with speech/sounds. At this point I don't think he will. He says so many words clearly now.
The lung doctor thinks he has a possible immune system disorder and lung disease. We will learn more about this when the tests of tissue and fluid they too come back. Hoping for the best.
The GI doctor, who was plain spoken and blunt (he was my favorite) said our G tube has bad placement, its too low in stomach, and has caused ulcers, which is likely causing all the underlying pain we knew he was having. He changed him to another type tube and hopes this will help. If not, they can move the tube to another location......which we pray wont be necessary.
The great news we got is Cohen can start eating more, and drinking some. We know this will be a slow process, and he is starting more intense feeding therapy next week. We are so happy and hope he will learn to be a normal feeder and can remove his G tube at some point.
I promise to give more detail when we get back the final reports. Thank you to all that have called, text, sent cards, facebooked, emailed, etc. We love you all lots=)