Andrew: 10-year-old ABI survivor

I know I will keep getting stronger and stronger

My name is Andrew, I am 10-years-old. On February 28, 2015 I suffered an acquired brain injury (ABI). This is my story.

I was playing at my best friend Keegan’s house. I came inside from playing on his ice rink when I started to feel a tingly feeling on my left side. I told Keegan’s dad I wanted to go home and asked if he could call my mom. I was walking up the stairs when I started to get a mild headache. It very quickly turned into a severe headache.

Keegan’s dad was helping me get my coat and boots on when the pain in my head started to get worse. I remember yelling and screaming to get some water and that the pain in my head was so bad. By the time my mom got to the house I was in so much pain I couldn’t stand it. I started getting so tired and all I wanted to do was fall asleep. They kept telling me to open my eyes but it was so hard. I remember hitting the side of my head because I couldn’t stand the pain.

The ambulance was called and they came right away. I don’t remember much after that but my parents told me what happened. They said that they checked all my vitals and everything seemed to be normal. They asked about mental illness in our family. My mom said that she doesn’t think that they could figure out what was wrong and decided that they were going to bring me to the hospital. I do remember getting into the ambulance but that is it. My parents said that another ambulance came to the house and new paramedics got in with me. When my mom and dad got the hospital they made them wait to see me for a few minutes.   The doctor told them that when I was in the ambulance one of my pupils dilated which showed the paramedics that I had a brain injury. They told them that I was very sick (on a scale of 1 to 10, I was at an 8). When my parents came into my room I had already been sedated and hooked up to a lot of machines. They brought me to get a CT scan and saw that I had a large bleed on the right side of my brain.

My parents were told that I was being rushed to Sick Kids Hospital in Toronto. The Ornge ambulance raced to Sick Kids with me and my mom. My dad, brother, Aunt and grandparents followed in the car. When we got there, they rushed me to the operating room. The surgeon came out and told my mom that normally they would do another CT scan when a patient gets there but there wasn’t enough time. My mom remembers asking if I was going to be the same kid when I woke up and the doctor said she couldn’t tell her yes because it was a massive hemorrhage and they couldn’t tell the damage it had caused yet. The only thing they could be sure of was that there would be mobility issues on my left side because of the position of the bleed.

Since I had not hit my head or anything like that the doctors came to the conclusion that the cause was an Arteriovenus Malformation or (AVM).

The operation was obviously a success because I am telling you my story right now. The operation took about 2 and ½ hours, they removed part of my skull to operate, relieve the pressure. I also had a drain on my head that was draining fluid from my brain. I was then wheeled into CCU where I stayed for 5 days. I don’t remember any of this time either but my parents said it was very scary. My blood pressure and temperature wouldn’t get back to normal and the drain I had in my brain was not always draining properly. Sometimes I had to be placed on a cooling blanket with ice packs on me. If I started to shiver they would give me something to basically paralyze me so I wouldn’t move. They told my parents that they needed my brain to be as inactive as possible. There was one day that my mom and dad were not even allowed to talk or touch me. All they were allowed to do was just sit and watch me. My parents said that was the hardest thing.

I had a few CT scans and an angiogram to see if they could find out the source of what caused the bleed. They discovered a small AVM in my brain but they didn’t think that it was the cause because it was so small or a “seed”. The doctors told my parents that they believe that the AVM that caused my injury may have destroyed itself during the rupture.

I got better and better and they told my mom and dad that they were going to take me out of sedation. I had a breathing tube in and they said that when they wake me up if I appear to be uncomfortable with the breathing tube in that it was a good sign and they could take it out. I am normally a gagger so as soon as I woke up I started gagging and trying to reach the tube to pull it out. They decided right away that I was ready to breath on my own. I don’t remember when I woke up but my mom and dad said that I said a lot of funny things. They both said they were so happy when I asked for water and whispered that I was cold. I hallucinated a lot the first day or so.

Soon I was ready to move on to the Neurosurgery floor. I had to go into a room with 3 other kids so that I could be watched all the time. I didn’t like it in there. It was loud all the time and I had to be woken up every hour so they could check my vitals and level the drain in my brain. Every time I moved they had to come and check the level. It was annoying because I couldn’t get comfortable ever. I had a lot of pain in my head, neck and my back. After a few days I got moved to a private room, it was quieter but I still wasn’t comfortable and the pain was still there. I was allowed to get in a wheelchair and go for walks with my family but it hurt a lot.

They clamped the drain in my brain and tested how my body would work on its own for 48 hours. I was good and they removed the drain. I had a few sessions of physio and occupational therapy but I didn’t know how I was going to walk. I couldn’t even stand up on my own. My left side was very weak, but every day I got stronger and stronger. A few days before I was discharged, I walked for the first time. I was slow but I walked all the way down the hallway and back to my room.

I was fitted for a helmet to protect my brain until my bone flap (piece of my skull that was removed) is replaced. This was the last step before I could be discharged. I was then moved to Holland Bloorview Kid’s Rehabiliation Centre on March 17th. I just wanted to go home, so for me it sucked. But my parents kept trying to remind me that it was the next step to going home. For the first two weeks I had to do lots of tests and assessments to see what kind of therapy I would need. My team decided that the only therapies I needed were occupational and physio therapies. We had a family meeting were they told my parents and I the results and they gave me a discharge date…. May 13th.

I got stronger and stronger. I think I have done really well, I reached all the goals that were set for me in physio and in occupational therapies I have improved a lot too. I think that once my bone flap is replaced I will be able to do everything that I could do before this all happened.

I was released on May 8th from Bloorview and came home to my class standing outside the school with huge “WELCOME HOME ANDREW” balloons and a huge welcome home sign on our garage. We had lots of visitors. It was nice.

I have another angiogram scheduled for the beginning of June, which is just exploratory to take another look to see if they can find the source of the injury and any other AVM’s that I may have. Once this is done, they will decide what they are going to do with the small AVM they already know about and any others that I may have.

I know that I still have a surgery in the next few months but I am happy to be home and back at school. Although there are a lot of things I can’t do right now and will require some support for certain things for a while, I know that I will keep getting stronger and stronger and it feels great to be home with my family.