First, Carson did AMAZING in all of it...he was so brave and cooperative despite none of the tests/procedures being easy or enjoyable. We were really optimistic after the sleep study because they left the cap on all night but that was short lived. After the scope, we found out another MAJOR surgery is needed before he'll be ready to have the trach out, if at all. Not only is it a major surgery but he will need a t tube for 6 months after that (He had a t tube a couple years ago for 3 months...he can only whisper while he has it and eating/drinking is very difficult so we will be back to largely tube feedings and you have to do bicarbonate twice daily with in office scopes monthly...no fun, no fun, no fun!) There are no guarantees that the surgery will be successful but there is tissue above his vocal cords that continues to obstruct his airway (more problemsome at night) and has to be removed.
Growth/time does not effect this area...so timing of the surgery is up to us. I will be calling soon to check on scheduling...but we would like to do it sooner rather than later if it has to be done.
I'll try to fill in more details soon...again, thanks for going on this journey with us. I know God's plan is good for Carson, I just wish it was a little easier.
"I have this hope, in the depth of my soul..."
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