April 3, 2012 mcfadyena

My kid is a Super Star

I know we all think that about our kids, at least some of the time. It’s what makes us good parents and what helps us put up with all the sleepless nights and frustrations. They are worth it! But right now, Trey is my super star. In the past five weeks, Trey has put up with 3 general anesthetics, 4 days and three nights with an IV, dozens of blood draws, needle pokes & infusions, EKG’s, numerous physical and neurological exams, cognitive testing, audiology testing, and I know I’m forgetting more.
What amazes me about him is that this past Friday, Trey had a general anesthetic (part of end of study tests- I’ll post results when I have them) that for 24 hours afterwards was dizzy and groggy and out of sorts from. Yet today, when Trey went back for his sixth intrathecal dose of Elaprase at 2:45pm, to go to sleep yet again only three days later, after knowing what’s to come, he still did it amazingly well. He wasn’t thrilled about it, but… mature. After not having had anything to drink or eat since the night before, Trey walked back to the bronchoscopy suite and lay on the OR table without aid, with all the equipment around (which I personally think can be intimidating), while the nurse anesthetist set up his pulse ox & BP cuff, while the team did their ‘time out’, and for the duration of the time it took him to fall asleep- in total about 10 minutes- without fuss and chatty as ever.
When Trey woke up from his general (his white count was again 1, which means no reaction or infection, yahoo!), he shivered for about 15 minutes. He just looked awful and cold and uncomfortable. It was so hard to watch, especially the second time in a week, and even more, because he didn’t choose this. I did.
After recovery & back at the Shore Stay Unit for the night, we visited with another family whose son just had an intrathecal port placed and another family whose son’s intrathecal port is broken and will be replaced in the next weeks.
All of this is a lot for a kid and family (extended family & friends as well- we’ve met some amazing extended family and friends while here and have a bunch of our own) to handle. But you know what makes this all worth it? As Dr. Muenzer walked me out to the waiting room after Trey was put to sleep for his dose today (I’m still working on him to let me watch it all ;-)), he commented on Trey’s vocabulary and his ability to have a conversation. This is man who, for his entire career, has watched 2/3 of kids with MPS II lose their skills and decline- what would have happened to Trey. He also told me that the doctor who does Trey’s lumbar punctures every month, who was part of the conversation about Modern Family and Bubble Guppies and chicken burgers back in the Bronch Suite, referred to Trey’s development and changes as ‘remarkable.’ Over the past few days, Dr. Muenzer has run into multiple people who have commented on how amazing Trey is doing. And it’s not just Trey.
This trial is changing the face of Hunter Syndrome. All of this stress and time away from home… it is so very worth it. For all our boys.
As an aside, just to keep us on our toes, Sadie developed a fever of 102F Saturday, so my mom and I had the pleasure of isolating her in a hotel room for 3 days and sanitizing doors, walls, bed sheets, handles, bodies & dishes, so Trey wouldn’t catch her flu, and Avery swallowed a penny Sunday night that hasn’t yet come out (we’ve been looking!), which we’ll deal with upon our return home.


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