Yesterday, I came into the kitchen and Trey was telling Laurel that tomorrow the surgeon’s were going to fix his hands so they feel better. He was going to go to sleep and when he woke up he would have splints on his hands. He seemed to understand what was going to happen and he didn’t seem upset about it.
We got “the call” yesterday at 11:30am telling us that we had to be at the hospital this morning at 6:30am. Trey’s was the first scheduled surgery of the day at 7:45am. The big butterflies started in my stomach yesterday at 11:30. However, I’ve had some smaller butterflies flying about in my stomach since we got Trey’s surgery date last Tuesday. Avery and Sadie were just getting over a cold (that Trey hadn’t gotten… yet) and almost everyone else we know was sick. Plus, it’s cold and flu season and the boys are in a preschool within an elementary school. Trey can’t have surgery if he’s sick and then next available surgery date was months away. On Sunday I started to feel sick, so began washing my hands so often, they are now raw. On Wednesday, after we got “the call” and Trey didn’t seem to be getting sick, I started getting less worried about the sick factor, and more worried about the surgery and snow factor. It has gotten very cold very fast here in Vancouver and we have a lot of snow on the ground. However, because we don’t usually get a lot of snow, a lot of stuff gets cancelled when it snows. I was worried the anesthetist or surgeon, or someone key in the procedure, was not going to make it. I barely slept Wednesday night and after waking repeatedly to check the snow and wonder if it was time to wake up, I decided it must be close to time, so checked the clock. It was 3:40am.
We finally woke up at 5:30am and got to the hospital by 6:30am. Trey was happy and easygoing until the nurse came in to access his VAD. He was upset, but not hysterical. More of a knowing, resigned sadness; lots of tears and hugs. He was okay again after that, through all the vitals and doctor check ups, until the doctor came in to take Trey to the OR. Trey flat out refused to go, so Ryan had to carry him in. Then it was just stress for Ry and I. Thinking about someone cutting into your child’s hands is awful. After just over 90 minutes, the surgeon came out to tell us how everything went.
Most of the details I mentioned on the News page, but below is the rest: Trey has half casts covered with gauze from his elbows to his fingers. He cannot do much at all, other than hold things in his arms. When he woke up from the GA, he came to pretty quickly, and he did not want his casts on. Within minutes of waking up, Trey was his putting arms between his legs and then squeezing his legs together and pulling his arms, trying to get the casts off. He was miserable and upset. This lasted about 20 minutes and when that was over, we were sent home (we were home by 11am). Trey was great the whole car ride home, and when we walked in the door, the first thing Trey said to Avery was: “These are my casts. They stay on.” And there hasn’t been a fight about it since. It’s now 1:30 and Trey’s doing well. He’s walking around, dancing, eating and a little grumpy, but otherwise, other than not being able to pick anything up, feed or dress himself, he’s back to his usual self. We can take the casts off in 5-7 days. I am frustrated that lack of knowledge in the medical world when it comes to MPS II and carpal tunnel syndrome has quite possibly led to Trey having permanent nerve damage in his right hand, but there’s not much I can do about that. I just hope that Trey’s doctors learn from this experience and that this website might prevent this from happening to another little guy.