Lizze just called me from Akron Children’s Hospital and told me that Gavin’s heart rate is so high that it keeps setting off the alarms. 

Right now, his resting heart rate is in the 140-150 bpm range. 

While they were sitting in the lobby waiting, his HR was in the high 130’s.  He’s not nervous about his infusion at all.  In fact he looks forward to them.

The problem is that it’s not good for his heart rate to be that high, let alone a sustained HR that high.

We are making phone calls in order to figure out what we are supposed to do.  His autonomic specialist is at the Cleveland Clinic but Gavin does have a kickass neurologist at Akron Children’s Hospital as well.  In fact, this doctor is the one who has handled every one of Gavin’s crises thus far. 
Emmett just left for my parents and I’m going to be making more phone calls and helping Lizze out anyway that I can while being trapped at home.