Stories

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 sidation.  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.

 

My Parent's Story

 

Playing with Keegan

Just a regular day

Then we get the call

“Andrew’s not feeling well”

No big deal, there in a minute

LIFE STOPPED…

Not yourself, yelling and crying, “my head hurts”

Not knowing what was wrong the ambulance was called

Straight to the hospital

Worst news ever!!

Bleed on your brain, our baby was very sick

Off to Sick Kids we sped, straight to the O.R.

Emergency Brain Surgery, is all we were told

Going to try to save your son’s life, is the last I heard

WHAT? HE WAS FINE!

2 and ½ hours later, surgery was a success

Long road ahead is all the doctors kept saying

We won’t know the damage until he wakes up

Days in CCU praying and praying to bring you back

Ups and downs with your condition until finally

If he fights we will take out the breathing tube, we were told

Slowly they wake you up

A stronger fighter I have never seen

Immediately grabbing for the tube

You talk for the first time, whispers, but I hear you

You want water

One of the happiest days of my life

No oxygen mask for you, fighting to have your face clear of anything

Pulling at the feeding tube, until they took it out

How is this going to affect him we couldn’t help but think

Hearing over and over how large the bleed had been

All these Thoughts running through our mind

But we had our baby alive

Meeting all the new people going to care for you at Sick Kids

Starting therapy, watching you struggle being so weak made me sad

But happy that you were you, just a little weaker

You got stronger and stronger, surgeons, doctors, nurses, therapists in disbelief

He shouldn’t be this strong is all they kept saying

It’s miraculous

You try to walk for the first time without balance bars

What!!!

All the way down the hall and back again,

No one thought it was possible.

Doing better than expected, transferred to Bloorview Children’s Rehabilitation Centre

Test after Test trying to get a starting point for your therapy

Family Meeting time, the results are in

You are amazing…..

A few things to work on but miles ahead of where it was assumed you would be

Discharge Date…… we watch your face

May 13th. A smile on your face, first real smile we have seen in a long time.

2 weeks later you are running down the hall

Nothing can stop you

Well on your way to make a 100% recovery

I don’t think we could be prouder

You beat the odds…

Fought to live….

And continue pushing yourself to get better and better

We are inspired by you…

Reminding us how important family is and

To make every day count

 

The Medical Story

 

Andrew was at a friend's house on February 28, 2015 when he reported feeling unwell. When Andrew's parents arrived to pick him up, they reported Andrew was awake but incoherent and agitated, followed by depressed consciousness. Andrew was taken to Lakeridge Hospital by emergency medical services. Upon arrival, he presented with an accute onset of right sided headeache followed by left sided weakness, decreased level of consciousness and suspicious seizure activity. It was also noted that Andrew was bradycardic with a dilated and fixed right pupil. He was intubated and sedated and given hypertonic saline. CT imaging revealed a large right frontal intracrainial hemorrhage. Andrew as then transferred to the Hosiptal for Sick Children for futher management. At SickKids, Andrew underwent decompressive craniectormy for hemorrhage evaluation and insertion of a right frontal external ventricular drain (EVD). A post-operative CT Scan (March 1st) showed interval right craniectomy and evacuation of the right parenchymal hematoma, as well as residual hemorrhage extending from the high right parietal lobe into the splenium of the corpus callosum crossing midline, and acute intraventricular hemorrhage in the lateral and third ventricles. No hydrocephalus was observed. Following surgery, Andrew was transferred to the intensive care unit for five days. He required deep sedation to maintain normal intracranial pressure. A cerbral angiogram (March 3rd) identified suspicion of an AVM arising from a branch of the right postero-lateral chorodial artery, with deep drainage into the internal cerbral vein. Andrew was successfully extubated on March 4th and transferred to the ward on March 5th for further care. On the unit, he was reported to display some confusion and disorientation, as well as left sided weakness and hemiparesis. Improvements in his left hemiparesis were noted during his admission, with complaints of pain in the coccyx and neck regions, as well as pain associated with movement. On March 11th, his EVD was removed and a MRI scan did not indicate any significant change in the right parietal intraparenchymal hemotoma. Andrew was admitted to Holland Bloorview on March 16th. Upon admissions , parents continued to report left sided weakness, which was improving, as well as some emotional liability. Cognitively, parents believed Andrew was returning to his baseline.