We had a check up yesterday with the surgeon who did Trey’s carpal tunnel release a few weeks ago. The news is great!! Trey can move his right thumb!! It wasn’t easy for him to do, and he still wasn’t able to touch his right thumb to his pinky, but he could connect his thumb with the rest of his fingers. The nerve must have done some healing in the past weeks. Awesome!!
Trey has also had some VAD excitement in the past weeks. For many monthes now, Trey’s VAD has given blood sometimes, but not others. However, Trey’s nurses were always able to get blood at least one out of every three times. Three is the magic number in the MDU. No blood three times in a row and an internal nurse alarm goes off. The infusion after Trey’s carpal tunnel release marked the third time in a row nurses were not able to draw blood from his VAD, so the nurses in the MDU decided to send Trey for an X-ray (I have done some reading about alternative ways to protect and heal the body from radiation such as x-rays, so if you’re interested, give me an email). After the x-ray showed that the VAD has shifted, but is still in place and is working from this mechanical point of view, we went back to the MDU and the nurses decided to do TPA (aka. Alteplase or tissue plasminogen activator). TPA is a drug put into Trey’s VAD to break up the fibrin which is the likely cause of Trey’s VAD allowing idursulfase in, but not blood out. The TPA was left in Trey’s VAD for one hour. After that hour, the nurses tried to draw blood, but nothing came out. They tried the TPA one more time, but to no avail. From what I can gather from what I’ve heard from other parents, and from what the IV team at BC Children’s hospital has said, as long as Trey’s VAD flushes well, the VAD should be left. I’m hoping that this VAD lasts a while, or at least until Trey requires another general anesthetic for another procedure.
The IT trial for MPS II is also upcoming, but I do not have enough information yet to post.
