It’s been over a month since Gavin has moved out of our house and into his grandparents house. He seems to be doing really well there a day we’re really happy about that.
Unfortunately, Gavin‘s health is not
improving at all, even on the new cardiac meds.
Gavin‘s resting heart rate sits at about 130 bpm +/-. While he was home the other day, he was up in the high 140’s and that’s not a good thing. We are currently waiting for his autonomic specialist at the Cleveland Clinic to get back to us about a secondary medication to help slow his heart rate down.
This means that at this point, Gavin cannot be considered medically stable. This makes residential placement all but impossible.
We have been advised to set our sights on Cincinnati Children’s Hospital because their residential program is tied to the hospital and they are supposed to be the best children’s hospital in the state of Ohio.
Unfortunately, I can’t do much until Monday when everyone is back in the office.
At this point, while we wait, Gavin is documenting his heart rate every hour, so we can have as much data as possible.
Wow. That's incredibly tough. I hope he can get stabilized soon. I'm glad to hear he is doing well at his grandparents. That is a great accomplishment.