Selective Dorsal Rhizotomy - "What the hey?"

 

Hey bloggers, I’m back with another blog post! Today’s blog is a very special topic to me.....It’s going to be a good one!

As you know from my previous post, I have Cerebral Palsy, (CP for short) which again, all that means is that I had a bleed on my brain when I was born, which affected my legs in specific. 

One of the complications you run the risk of with CP is spasticity. However, how bad the person’s spasticity is depends on the severity of CP they have.

Luckily for me, I only have type one of CP, and because of this, the spasticity that I have, obviously isn’t at it’s worst but it wasn’t good ether way you cut it. It needed to be fixed.

My parents are always doing research to see if there are ways that they can help, and one year there was a winner!

I had a surgery done five years ago as of July second this year called Selective Dorsal Rhizotomy (SDR), which is where the doctor makes an incision in your back, and then he goes in, and tests all the nerves in the spinal cord. Any nerves that fail to work after you reach that point, the doctor then cuts. I was 10 when I had this done.

There are two doctors  that perform this surgery, and only two states that you can have it done in. One is St. Louis, and the other is Seattle. 

I had this done by the number one recommended doctor in the states whose name is Dr. Park. This meant that I had to go to the St. Louis Location.

My Dad, and I flew from Las Vegas, (Which is where I live) to St. Louis Missouri on July 1St, ready for the same day consultation, and my Surgery was the next day, July 2, 2013 at St. Louis Children’s hospital.

Within a few hours of getting to the hotel, my Dad and I took a walk down to the zoo close by. There we met a Bear, a baby elephant, and it’s Mum. We spent a little while there just having fun, and taking the beauty of it all in. I also took some pictures.

After leaving the zoo, the next thing on our list for us to do was go to my consultation with Dr. Park. Here he just went over like what time to be checked in for, what to expect after surgery, and asked a couple of questions about what I’m able to do, how I get around, and so on. It was at this time that it finally hit me. My hands started getting sweaty, and my heart started to pound out of my chest, the nerves had kicked in, and I realized that I was having surgery tomorrow!

My consultation was finally over, and a little time had passed just before we decided to go and get some dinner as we were starving!

We did what my family, and I always do, which is when there are so many places to choose from and you can’t decide where to go. My Dad, and I ended up at a Chinese.... that was absolutely delicious, so much so that we had to go back a second time! It’s actually quite funny because we can’t find a good Chinese food restaurant in Vegas at all! My Dad, and I shared a huge portion of duck pancakes whilst FaceTiming my Mum, and eating at the same time as she was still in Vegas with my sister Yazz due to my parents not wanting to leave her alone. At one point in the conversation, my Dad asked my Mum what she was doing, and my Mum said she was making the bed, and then had to go as she was going downstairs to put some washing on. I didn’t think anything of it, and just finished my dinner. When we were done eating, and Dad had asked for the check, and it comes, and weirdly enough, there were fortune cookies in it. I open mine, and it said, “ a life changing event is coming your way soon.” 

HOW FREAKY IS THAT? IT’S LIKE THEY KNEW.

My Dad and I get back to the room after walking back from the restaurant, and I just got enough time to sit down, and I was getting really tired, so I was about to go to bed, until my Dad says, “Shall we go get a drink at the bar?” I tried to explain to him that I need to go to bed, as I’m tired, and need to get some sleep before my big surgery tomorrow. My Dad once again tries to get me to go, and get a drink with him, by saying, “Only one, it won’t take long?” I said okay, and we both got up and left the room. We were going down the lift, and I was on my phone doing something, so I wasn’t paying attention to where he was going. It wasn’t until I looked up, and realized that he was going towards the part where you go to get a taxi if you need one, not the bar, so I asked my Dad where he was going, and he said, “We’re just going to wait here for a second.” I wasn’t sure what he meant, but I just went with it. A few minutes later I see a taxi pull up right in front of us, and little did I know my Mum was going to step out! I was super excited now, so my feet got really badly tense, and I gave my Mum a massive hug. It was my ”MUM!!!  My Mum said, “Hi Mean! Why are your feet so tense? I just let a little giggle out, and started crying from excitement. After I calmed down a little, I said hi, and then my Dad said,“Are you excited to see Mum?” I said yes, my voice was still full of excitement from what had just happened!

On the way back to the room whilst my Mum was with us, and we were all together, ready for my BIG day tomorrow, my Dad tells both Mum and I that he videoed Mum’s arrival, and my Mum said, “Oh really?”  My Dad replied yes, and said;”I’ll show you when we get back to the room.” We get back to the room, and Dad showed us the video, and explained that Mum had to sit in the airport for seventeen hours, and wait for a ‘“Stand by flight” I didn’t know what that was at the time, so my parents explained it to me, and it’s where you have to wait until there’s free space on one of the flights that go to where you’re going to. Whether that’s because someone cancels his or her flight, or someone for whatever reason doesn’t show up. As long as there’s a seat that’s not being used, you can get on that flight.

After the conversation was over, we started to get tired, and decided to actually start getting ready for bed for real now, but first, Dad of course had to take take some pictures of Mum and I. When we were done taking pictures we went straight to bed.

The next day came quicker than ever, and it was time to have my surgery done. We checked into St. Louis Children’s Hospital bright and early the next morning, and sat in the waiting until my name was called, and it was time to start preparing for surgery, and for the doctors to come in, in order to measure how much medicine I need to be able to go to sleep. The doctors also had to come, and put a hospital band on me that lets them know my weight, and other personal information. After this I was told to put a hospital gown on. Eventually the time came that I had to be given the medicine to send me to sleep, so the nurse came in, and just asked me the general questions like are you ready, and so on.  After I took the sleeping medicine I became incredibly delirious, and the people took me into the operating room and started doing the surgery.

The SDR surgery only took just over 3 hours, but it took me a very long time to wake up, so my parents started to get a little worried. When I first came out of general anesthetic, my parents met me in the recovery room, but I don’t remember much, as I was still half asleep, and out of it. All I remember really is that when we got back to our hospital room, I was groggy, and at one point, I was unresponsive to my parents.

Later on, Doctor Park came to check on me in our room, and said that I need to try and eat something, but also rest Dr. Park also said that he wants me up, and active once I feel like it. I also had to do physical therapy to start using my legs again. 

In the meantime, people were sending me get-well gifts, and cards, and my parents were by my side the whole time!

My Mum, Dad, and I got to watch the 4Th of July fireworks from our hospital room window, whilst Dad was watching a TV show on his iPad, and Mum was sitting with me on the bed.

The flight home was very painful, but worth it in the end