Thanks to the amazing work of Akron Children’s Hospital, Gavin’s made it through another IVIG infusion, successfully.
Things got a bit dicey a few times but nothing came of it.
He actually fell asleep, which is unheard of for him. Our nurse said that he fell asleep once before but I wasn’t there that time.
Overall, Gavin tolerated the infusion and increased dosage pretty well.
He is experiencing side effects for the first time is as long as I can remember. He has a headache and the chills but these are pretty typical for kids on IVIG. Perhaps it was the increased dose that lead to the return of these side effects but they aren’t anything to be concerned about.
At one point, Garvin began sweating and the back of his pant legs were wet from sweat. This was really concerning because, it’s physiologically impossible for Garvin to sweat and that’s a part of the autonomic dysfunction.
The only time he’s ever sweat, in his entire life is when he’s in a crisis.
Needless to say, the nurse and in were a bit nervous.
Fortunately, nothing came of it, at least yet. On the ride home, his heart rate was still in the 140’s but he seemed to be doing okay.
I dropped him off at my parents house, where he will get some rest until Lizze’s Mom picks him up after work.
Part of me want to keep him home from school tomorrow because this clearly took a toll on his body but we’ll have to see how he’s doing tonight and in the morning. Of he’s still feeling okay, there’s no reason to keep him home.
The entire process completed around 2pm this afternoon and didn’t take as long as I thought it was going to.
I met with Dr. Wasserbauer, but that’s for another post, as soon as I catch my breath. It’s been a really long day and right now, Gavin’s doing well and that’s what matters.
I want to thank Akron Children’s Hospital and the outpatient infusion lab for taking such h good care of our precious cargo. 🙂
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