Figured Id share this with you guys. I had to write a 2-3 page essay about something that happened in our lives.. We had to describe the feelings, tastes, smells, sounds, and sights. I figure since youre all pretty close to me, Id share what I wrote.. Itll give you more of an insight of my hospital stay ;) Johanna Joseph Mr. Woodward English Comp. I got out of the car, into the noisy city of New York. Car horns going off every which way, people walking by talking loudly on their phones or to their peers. The thick smell of the city was apparent. I approached the large hospital building, New York University, and was directed to where I needed to go. I was about to have brain surgery, you could say it was slightly frightening. The quest to save my life started there. Jump back 3 years prior, when I was diagnosed with Tourettes Syndrome. I wasnt just diagnosed with Tourettes, I was diagnosed with one of the worst cases documented in the world. The constant noises, jerking, contorting movements, my neck whipping back and forth constantly. My muscles felt like they were being ripped out of my skin every day, all day. My sleep was scattered and I relied on medication to sedate me enough to sleep. The constant seizure like attacks were so severe, nobody knew how to help me. I was told within a year, I would be paralyzed. I was absolutely terrified. My body totally turned against me. I couldnt even get myself a glass of water. I was 16 years old and my mother had to help bathe me, feed me, push me in a wheelchair, and more. It was horrific for me. We ended up at UPenn where they again stated I was the worst case theyve ever seen, and the only hope we had was an experimental brain surgery known as Deep Brain Stimulation (DBS). All of the thoughts rushed to my head.. The potential for a life again, to walk, to feed myself, to bathe myself, and to be left home alone? What a blessing that would be! But the risks.. Brain bleeding, infection, this is major brain and chest surgery I was going in for! They sent me up to NYU to see Doctor Mogilner, the head neurosurgeon who has performed DBS on thousands of patients, but only 7 whom had Tourettes Syndrome. I was going to be number 8. Back to the morning of surgery, as I walked through the doors of New York University Hospital. I was taken back to a room where I was put into a gown and the nurse was ready to take me back. She had a wheelchair for me. It certainly was not as comfortable as my personal one. It felt like I was sitting on a tough slab of rubber. The squeaky wheels on the chair as we rolled to the operating room were slightly irritating. The moment when the nurse said to my mom Okay, you can go wait in the waiting room now is when everything truly hit me. As she walked away the feeling in my gut was horrible. As if Someone punched me in the gut, and I was about to throw up. I started to cry as I had just realized this is a matter of life or death for me. If I made it out alive, would it help me? Would this surgery truly save my life? We entered the operating room. Immediately I felt the chill of the room. It was very cold as everything is kept sterile. My eyes started to wander around the room. I could see the giant CT scan machine, the halo frame that goes around my head to hold it still, and the table. I was immediately put into one of their chairs and had a ton of nurses around me. I had a few nurses holding me down so the other ones can do their job. Remember, my constant movements were just that, constant. I felt the blood pressure cuff get wrapped around my arm, at the same time I had the heart monitors being stuck to my chest. Next was the worst part for me, when they started shaving my hair. The feeling of my hair trickling down my neck and arms was unnerving. As the nurse continued to shave my hair, the other nurse put the IV in my arm. I was still being held down by the other nurses, as the white milky looking liquid was going through my IV into my veins. The metallic taste in my mouth came apparent, then I fell asleep. I woke up relatively 4 hours later. I was being wheeled down to the CT scan room. I was in and out of it. I remember seeing my head nurse saying ‘everything went well now we’re just doing a CT to make sure everything looks good’. I drifted back to sleep. I woke up again in the CT scan itself, and I REALLY had to pee! What a horrible feeling. Not only that, but the severe migraine I was experiencing was not fun!! I fell asleep once again, and woke up in the Neuro Intensive Care Unit (ICU) on the 8th floor of NYU. It was dark in there, as I asked to not have the bright lights on and the shades closed. The heart monitors beeping constantly, two IVs in my arms, and a tube that goes straight into my artery. That tube in my artery was incredibly painful. It was a thick tube, I’d say relatively 10-8 gauge. Every little movement I made, the tube moved ever so slightly. It must’ve been hitting a nerve, because the pain was extraordinarily painful. I was given some Graham crackers and Ginger Ale. The taste of the Ginger Ale was so refreshing. It soothed my throat as it was sore from the breathing tube. Overall I was not very hungry. Anesthesia doesn’t make you feel that great. A few hours later, when the pain got too unbearable, I was given a dose of Morphine. That was a mistake.. A few minutes later I sat up and it all came out. I threw up for the fourth time in my life. That was a horrible feeling right after having brain surgery! Over the course of the night I slept very sporadically. With the heart monitor constantly beeping, the TV on for the rough portions of the night for me to focus on, the excruciating pain in my head, and the horrible little tube that was in my artery, it wasn’t easy to sleep. Even though half of my head had local anesthesia, It was difficult for me to rest my head. I had 46 staples, 23 on each side, that were very painful to have any pressure on. All that was left to do was try rest until my second surgery the next day. I woke up and was wheeled down to the pre-op room. My parents were able to be in the room with me, which I appreciated. The second surgery was to implant two batteries in my chest which would be wired up to my brain that same time. That would send the constant current to my brain which in turn, should stop my tics (movements and vocalizations caused by Tourette’s). I fell asleep and was wheeled back to the Operating Room. That surgery took about 3 hours. I then woke up and was discharged back to the Ronald McDonald House. I was at the Ronald McDonald House for one day, then was discharged to go home! When I arrived at home, there was a sign my friends made and put outside the house. It read “Welcome home Johanna!” I felt really loved at that point! Overall I was feeling okay. The pain was still severe, but moderate with medication. The trauma to the thalamus portion in my brain had still relaxed my tics quite a bit. I had a lot of relief, and it was amazing. I went back to New York University in a week to get my batteries turned on. Over the course of the week, I was pretty up and down. But the best part about my recovery, was the support I had. I received several “care packages” daily from people around the country! It was amazin to have all of the support. They truly made me smile during the recovery. It certainly wasn’t an easy one! My tics slowly started to creep back, and were almost back to full severity by the end of the week. Now, it’s back to the noisy city of New York! We arrived at their office inside of the hospital. Still very big to get around it all, but we did it. They placed a sensor-looking device around my chest, and laid it across one of my batteries. It connected to a large PDA like machine that turned my batteries on! We had to find the ‘perfect’ adjustment for me, which would be a long journey. But for now, it was to find the perfect one for the time being. Through the different settings they tried, I either felt no different, to so different that the room was literally spinning upside down! It was REALLY crazy to experience havin my brain controlled by a little remote. How strange is that? Over the course of the next 8 months I was doing okay on that setting, but gradually started getting bad again. We went back to New York and was adjusted to a different pulse width. Now, I’ve never felt better. My life has truly been saved. I couldn’t be more thankful for the doctors at NYU, and ultimately God for guiding me here. I can now do everything on my own. I still might not be able to walk the mall without the help of a wheelchair, but overall my life has been fantastic. I’m going to college, working, driving a car, riding a motorcycle, etc. The possibilities are endless!
Posted on: Fri, 05 Sep 2014 17:58:06 +0000
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