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.
Right now we are seeing a parallel from last year at this time with his tolerance of using his portable vent. Mainly it has come down to the HME (Heat Moisture Exchanger) on his portable vent vs. his normal vent with constant and better humidification. We are still trying to figure out why he has this issue during the spring, but it has created challenges. If we were not in this pandemic with a stay at home quarantine in effect, he would certainly be missing school, therapy, and would not be able to make any extra outings. Hopefully as we get into the warm weather, we will see his tolerance come back. Between his portable vent issue and not having the pacers, we will have a whole new set of challenges when it comes time for Kindergarten and especially 1st grade when he will be in school for more than a couple hours at a time. Baby steps!
Power Wheel Chair
IT’S FINALLY BEEN APPROVED!!!!! Now we are just waiting for it be built and delivered. Maybe another month or so given the situation.
Reilly’s Forever House
Waiting is the naming of the game these days! We are waiting on a few adjustments to the grading plan for fire and then we should be good to pull permits. The issue is that things have slowed way down with our civil engineer and the county. I hope that by early summer we will have a permit in hand and be grading.
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