Hello! I have a lot of updates since my last post. As you know, I had my long-awaited surgery on Thursday. I’m going to try my best to explain the surgery again. Dr. Scott Kozin from Shriners Philadelphia led a team of three surgeons. They took out the gracilis muscle, its nerves, and arteries/veins from my left leg, moved it all up into the triceps region of my right arm and attached it to the healthy supinator nerve, which runs down into my wrist. Obviously, it was more complicated than that, but we’ll stick with that. In a few months, when this all heals, I’ll be able to extend my arm (triceps) when I think about rolling my wrist over. Crazy. It will take some time to retrain my brain, for sure, but I’m up for the challenge. This is only the beginning of what Dr. Kozin plans to do. In about six months, I’ll have the surgery again, this time using my other gracilis muscle to give me biceps function.
I know this chapter in my journey is going to be hard, but it’s going to be worth it in the end. Having better arm function in my right arm is the first step in regaining some more of my independence! And I’m so ready for that.
This latest adventure started on Thursday morning. My parents and I hustled out the door to make our 6 a.m. arrival time. The team at Shriners was wide awake and ready to get started — definitely more caffeinated than I was. The first question they asked when I arrived at pre-op. was whether I wanted cupcakes, butterflies, or rainbows on my pillowcase. It’s funny being 24 at a children’s hospital! Those pillowcases are a sweet gesture to ease a kid’s nerves though — and it calmed mine a little, too. After some prep, I rolled into the operating room around 7:30 a.m. and drifted off to dream land. Anesthesia is some amazing stuff. I woke up around 5 p.m. in the ICU ward oblivious to all the amazing work that Dr. Kozin and his team had done the previous nine hours.
The rest of Thursday and Friday is a bit of a blur. I was pretty out of it. All I can remember about Thursday night is that it was hot. Dr. Kozin had warned me that the room would be kept warm to ensure that all the transferred tissue and muscle was happy and healthy. I groggily asked the nurse for water about 15 million times even though I wasn’t allowed to have any. I even took the oxygen out of my nose and tried to use it as a fan for a while. The nurse wasn’t too thrilled about that. Every hour, the nurse came in with a little device and listened for two pulses in the back of my arm to ensure that the new blood supply (that used to be in my leg) was alive and well. Thankfully, it beat strong the whole time.
On Saturday and Sunday, my sisters came to visit and I started feeling well enough to eat a little bit. I slept most of the weekend and was transferred out of the ICU and to the general floor on Sunday afternoon — arm heartbeats still going strong! On Monday, Dr. Kozin and a resident came in to switch the soft cast that was on my arm after surgery to the hard cast I will wear for the next six weeks (see below). They also took the dressings off my left leg. I’m going to have a nice 10-inch scar there and a few on my arm, but oh well, it’s a roadmap to my recovery.
By Wednesday, I was ready to head home. The final step before takeoff was for mom to learn how to give me a shot of a blood thinner I’ll have to take for a week or so after surgery. She was terrified the first time and it was pretty hilarious, but she’s a pro now.
So now that I’m home, it’s basically a waiting game. I go back on April 24 to get this giant, pesky cast removed and we’ll get a look at how everything is responding. That will be followed by occupational therapy (OT) and (*fingers crossed*) more and more arm function.
My stay at Shriners was great. The doctors and nurses were amazing and I’m so thankful they opened their doors to me. Dr. Kozin is world-renowned when it comes to these kinds of surgeries and I’m so blessed to be under his care.
It’s crazy to think that this entire experience would have never happened if it weren’t for a little comment that my mom made to my primary care doctor back in September: ‘If you ever hear of any studies or anything, keep us in mind.’ A couple of weeks later, he put us in touch with his friend, a wonderful OT who got me in to see the amazing team at Shriners. I guess it’s true what they say: no question is too small. And any time is a good time to advocate for yourself.
Thank you, everyone, for your continued support. Your thoughts and prayers mean everything to me. Thank you Dr. Kozin and everyone at Shriners! I’ll be back soon.