Got the news that when Bodie goes back to have the jaw distractors removed, they are going to downsize his trach again (from a 3.0 to a 2.5) and try capping.
Capping is just what it sounds like, they cap the trach forcing him to breathe through his mouth/nose. He'll either tolerate it well or he won't. I'm hoping he does well. He's gotten up to over 5 minutes with the Passy-Muir valve (a form of capping in a way). He only gets upset when he coughs. I think it scares him & the effect is like a snowball going down hill.
If the capping goes well they could remove the trach altogether, my question is where are all those secretions we constantly suction out going to go?
His swallow study came back positive, meaning we can continue with oral feeds even though he does not like them. Feeding seems to be the last big hurdle for trach kids & Bodie is proving to be textbook in that area.
Overall I am thrilled with his progress. I do hate that we have to wait until July 26th to get the results from the muscle biopsy. They do not give out results over the phone & have a two month wait for an appointment... Arrrrgh!
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