Let me start out by stating that I’m absolutely overwhelmed. The last few weeks have been incredibly challenging for me. The last 2 weeks in particular, have been much worse because I’ve been so worried about Gavin’s health.
I have an update for you but not really an explanation because I don’t know that we really have one at this time.
After an enormous amount of frustration, glitches with MyChart, and long phone conversations with the always amazing people at Akron Children’s Hospital, I was finally able to get the results from his recent labs.
The headache it took to make that happen is due in part to unusual circumstances, HIPPA and technical problems. That said, they magically showed up in MyChart last night and I was able to see that Gavin’s Immunoglobulin levels are sitting in the normal range, at least for the most part.
His IgA levels are still low but it’s not a major concern.
I spoke with his immunologist this morning and we don’t know what is going on or why the labs are better. The assumption at this point is just an issue at the lab. We are going to test more frequently and keep an eye on his numbers. We may need to adjust his meds.
While those numbers are okay, his Bilirubin is still high and that indicates liver problems. I have a message into his PCP to follow up with that.
Gavin doesn’t appear to have any symptoms of jaundice or anything else but that doesn’t mean there’s not a problem.
For now, I’m super grateful that it was positive news, at least for now. Thank you to everyone for all the love and support. While I got the results last night, I wanted to wait to speak with Lizze and hear from Gavin’s doctor before dropping an update.
Thank you for your patience and your concern.