For everyone following Reilly’s journey, we have an update to share!
Reilly’s overall health and demeanor have been good. He’s happy, goofy, sarcastic, and 4 (almost 5) going on 14!
We had a more in depth scoping done back in January to see if there were any complications around his trach site or his esophagus which would cause him to desat when being capped. Right now, he “tolerates” his pacers when being on the speak valve although he doesn’t prefer it to his normal vent because it feels funny and because his speech to be different. Scoping was unremarkable…no granulomas, no scar tissue, & no major esophageal side wall collapse. What does this mean? It basically means that he doesn’t tolerate change. Big shocker!!! We are back to minuet baby steps. We have decided to go back and have an inline speak valve ordered so that he can get use to the sensation of it while being on his regular vent. Once he has shown that he’s comfortable with it, we will move to the next phase of going back to his pressure support mode used in tandem with his pacers. Once he seems comfortable with this step, we will have a custom 3D printed speak valve added that can be turned to all the way open or dialed down to being completely closed like a cap. This whole process may take a LONG time given Reilly’s track record with changes, but the idea is that with these changes he will hardly notice.
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