Trey had a successful VAD surgery this morning. We were in and out of the hospital in four hours and there were no complications. Trey was not intubated, he had only a laryngeal mask, which is easier on Trey’s throat and less problematic when working with restricted airways (although they weren’t overly concerned with Trey’s airways based on his x-rays and since he was already intubated without problem for his adenoidectomy).
While we were there, we had a visit from Dr. Stockler and Dr. Mahmutoglu (a clinical fellow working with Dr. Stockler who will be in charge of Trey’s ERT). After corresponding with them about Elaprase rates and premedications over the past weeks, they told me today that they really want to follow Elaprase protocol (I looked into another way of doing it which I approached them with), and they gave me their reasons. I am okay with following protocol, since their reasoning worked with mine and made sense from the reading I have done. If Trey has a reaction, I may want to try an alternative way of infusing, but for now it sounds like we’re following protocol. The doctors also agreed not to premedicate Trey unless he has a reaction. I also asked that if Trey does have a reaction and we do need to premedicate, that we start with Claritin, instead of Benadryl, since Benadryl can have some nasty side effects, and that is okay with the doctors. Everything is in place! Trey may start ERT as early as next week, but we will not know until the weekend.
We had another visitor while in the Surgical Daycare Unit, a reporter from the Vancouver Sun, Pamela Fayerman. She is writing a story about Trey, which will be in the paper probably Friday or Monday. She was at the hospital for an unrelated reason and wanted to stop by and say hello.
Thank you to everyone who wished us well for today. Your calls and emails really mean a lot to us and taking Trey in for surgery this morning with all of your support was reassuring.
Lots of love,
Deb
