Alright…infusion #13. Trey developed a runny nose over the weekend, but we went to the hospital on Monday anyways because he had no other symptoms. They cancelled his ERT for the day and agreed to try again on Wednesday providing his cold hadn’t gotten worse or turned into something else. This was okay with me and this is what happened.
Trey did still have a runny nose on Wenesday, but continued to have no other symptoms. We were at the hospital at 8:15am. At that time, his temperature was somewhere in the high 35 degree Celcius range. Trey did start his infusion, but not until 11:00am because Trey’s ERT doctors wanted second opinions etc. Better safe than sorry, and as long as Trey was getting his infusion, I didn’t care how long it took (well, the Elaprase only lasts 8 hours unrefrigerated, hanging in that little bag above his head, so as long as it happened in under 8 hours, I was okay).
He started at 8mL/hr like usual. In 15 minutes, when Trey’s nurse took his temperature to move up to 16mL/hr, it was 36.9 degrees Celcius. This was a little too high for her liking, so she called Trey’s ERT doctor. They decided to give him Tylenol and keep him at 8mL/hr for a while (2 hours). His temperature went back down with the Tylenol and stayed there, so at 1:00pm they agreed to raise him to 16mL/hr. And after another hour of no increased temp or other reaction, they raised him to 24mL. That continued hourly until 40mL/hr was reached. We left the hospital around 6:30pm.
What does this mean? Well, I didn’t know, so I emailed Dr. Stockler, who oversees all of Trey’s hospital care. 36.9C is not considered a reaction (as it is not even considered a fever), but because it was a noticeable change in temperature, they want to be cautious. So for the next few infusions, it looks like Trey’s rate will be slowed down and there may be some discussions about premeds, although I would like to avoid what premeds we can. As long as Trey doesn’t have any serious reactions and as long as he gets his infusions, I can handle the longer days (I think…although last night was a bit of a gong show).