The procedure was 4 hour and 15 minutes. Trey’s surgeon, Dr. Verchere, booked him for 3 hours, thinking it would be plenty time. There was a lot of scar tissue and a lot of tenosynovium (what builds up in the carpal tunnel in people with MPS and causes compression of the nerve, and also, what Dr. Verchere cleared out of Trey’s hands 3 years ago). They also didn’t have a nerve stimulator that worked. Dr. Verchere tried 5 different nerve stimulators; people from departments all over the hospital brought their nerve stimulators, but none of them were consistent. So, she could not tell us if Trey’s nerves were damaged during the surgery or not. She says her gut feeling is that the surgery went well and his nerves should be fine, but she was frustrated to tell us she couldn’t give us an accurate answer. The answer will come over the next weeks as we watch Trey use his new hands.
Dr. Verchere commented that Trey’s nerves didn’t seem overly compressed. There was a lot of build up, but the nerves weren’t at all dented, as they can be. She says moving forward, she doesn’t know what to recommend regarding testing and potential future surgery. I’d like tests at some point to have a new baseline for where Trey is at after this procedure, but Dr. Verchere doesn’t know what she’d do with that information. She doesn’t know how much benefit there would be vs. risk of more scarring, damage to the nerve during the procedure and of general anesthetic. Not the most satisfying surgical results, but Trey’s hands are clear again, I trust Dr. Verchere, and here we are.
In some ways it gets easier in that we know what to expect, we’ve been here before, but in other ways, not so much. Yesterday especially, but the past few days have been rough. I think it’s a combination of all the appointments (orthopedics, ophthalmology, speech, occupational therapy, osteopathy, neuro, general pediatrician), monthly general anesthetics for which we need to keep Trey healthy, bimonthly surgeries (right now the surgeon is back there with my sleeping son…), being out of town for half the month, trial life, jet lag, feeling sorry for my child’s lack of ability to go swimming, for playdates, and participate in all the other things his siblings and friends get to, and for me, not fitting into life as everyone around us lives it… It’s been hard and isolating. And that’s all with intense gratitude for our opportunity within this trial.
This morning I was woken up by a phone call from Surgical Daycare asking us to come in early. The first ‘case’ of the day had been cancelled. We had decided to bring Avery and Sadie to the hospital with us because firstly, they wanted to come and be included and secondly, in all honesty, I want them to have a clue what it is that Trey goes through. So, we woke everyone up and got on our way.
Right now, we’re waiting for Trey to wake up. With the anesthetic they used to prevent nausea and vomiting, due the lengthy procedure, the drugs will have gone beyond his blood stream and into his fatty tissue, meaning he’ll be sleepy for longer because the drugs will take longer to exit his system.
In trial news, I found out last week that because we live in Canada, there will be an additional step in getting Trey’s IT infusions set up at BC Children’s Hospital. In addition to negotiating funding and ethics with the ‘home’ hospital, Shire needs to apply to Health Canada for a Clinical Trial Agreement (CTA). Because Trey will be the first child to participate in the trial in Canada, Health Canada will need to approve this trial existing on Canadian grounds, which means we will likely be traveling to UNC for a longer period of time for monthly doses. Breaking new ground takes time… the good news is that we don’t have to wait for treatment while we wait for beaurocracy and institutions do their thing. Last time we had to wait and watch Trey’s dsease progress while Health Canada and the BC government and BC Children’s hospital negotiated the cost vs. benefit of saving Trey’s life with IV Elaprase. This is definitely an easier place to breathe.
Oh, to the ebb and flow of life…
