August 10th, 2012 started off like any other day, until our seemingly perfectly healthy and happy son collapsed and fell down the stairs. He was unconscious and not breathing. We frantically started CPR and it worked within a minute or two! He was still unconscious but his chest was moving, which meant he was breathing!! CPR WORKED!!
We were rushed to Nationwide Children's Hospital where a plethora of tests were run. All CT scans and x-rays came back clear. EEG and EKG tests came back normal and we were breathing a little easier. That is until the electrophysiologist came in shortly after and told us that a mathematical error had been made and that our son had a borderline long QT interval.
We were blindsided, puzzled and confused. We had never heard of this, let alone known anyone that had such a condition. She went on to say "in no way is this a diagnosis" and advised us strongly to not do any research. She said that we would follow up in two weeks to do a stress test and we would go from there. We were guaranteed that we were safe to go home, but what we soon realized was that nothing in this life is ever guaranteed.
We came home, but we were frantic. And sure enough, not even three days later our son went into cardiac arrest in his sleep. My husband, who was sleeping next him was woken up by a sudden jerky movement just seconds prior. We started CPR, but it wasn't working. The minutes that felt like hours passed and we continued until the EMS crew arrived. They reiterated our worst fear, our son had an undetectable heart beat. CPR continued without cease until we arrived at Licking Memorial where they finally got our son's heart in a normal rhythm, but the extended period of time without oxygen couldn't be ignored by anyone. They immediately got him intubated and began therapeutic hypothermia therapy (they covered him with ice) with the hope of drastically dropping his body temperature to preserve his brain and vital organs.
To put things in perspective, for every minute that you are without a heartbeat your chance of survival decreases by 8-10%. Our son is a 30 minute CPR survivor. We were manually pumping the blood through his body with compressions, but clearly his blood was loosing oxygen. I thank God everyday that no one ever gave up.
Our son was life flighted to Nationwide Children's Hospital and we ended up in the cardiac ICU. He was induced into a coma to let his body heal and allow him to be comfortable. He was hooked up to many machines and placed on a cooling blanket to continue the therapeutic hypothermia therapy. The next task, a MRI. It was no secret that the doctors were very scared of what the MRI might reveal due to the extended period of time without oxygen.
The doctors did an MRI on our son's heart and brain. Structurally speaking his heart is perfect, but our deepest fears were confirmed…our son had suffered "severe brain damage on both sides of his brain." The four sterile walls immediately crashed in on us when we heard everything that our son would never be able to do again. He would most likely never walk (in fact the chief of neurology had only ever seen one child walk again with this amount of brain damage), maybe never talk, his vision would be severely compromised along with what felt like a million other deficits that should be expected. It proved to be too much for us to handle. In that moment we decided that we couldn't mentally comprehend or endure one single word of what our very realistic team of doctors were saying. These very educated doctors were amazing and played a vital role in getting our son thus far, but they were judging our son's whole outcome based upon one picture, there was one doctor that kept reminding us that these were only pictures and we decided to put our faith in her. We could not accept their answers. Mid meeting we stopped listening and started thinking about how we were going to help and accept our son exactly how he was in that minute. We were only going to focus on him and quickly realized that we would be much more accepting of the outcome if it was our son showing us exactly what he was and was not going to do. That is when our focus turned solely to our son. He was going to be the only one the could show us exactly what " severe brain damage" meant, and we were sure that there was not a tougher kid for the job.
About a week later our son was successfully extubated. Then the death defying moment came to allow him to wake up! He successfully woke up and although he was not exactly the little boy we knew just days prior, we knew in that moment that our family of five would continue to be just that. Eventually he moved both sides of his body, but he woke up 100% cortically blind, which meant his brain could not interpret the pictures that he was seeing. We felt strongly that he was going to be able to gain back everything! But unfortunately teaching a child to see again was simply not an option. We tried to keep perspective and realized that the most important things had just been proven, but the weight and worry about his his vision seemed to consume us.
An internal cardiac defibrillator was surgically implanted and that combined with taking a beta blocker everyday should keep our sweet boy safe and healthy. The defibrillator would keep a 24 hour watch over his heart and it would allow us to breathe a little easier. We looked at this device as one of his many guardian angels. Everything went as planned and our official road to recovery had begun. Although there were a few bumps in the road, everyone was about to be blown away by all of the miracles and healing that we would continue to see as we embarked onto yet another chapter of our journey: the rehab floor.
So I am sure many of you are wondering what long QT syndrome is. Long QT is a disturbance of the hearts electrical system. Repolorization (when the heart recharges for the next beat) takes a little longer in people with a longer QT interval, which can cause erratic beats which result in fainting, dizziness and/or cardiac arrest. Structurally speaking our son's heart is perfect, this is an electrical condition. Common practice is to follow up with genetic testing, which of course we did. All of the genetic testing has since come back negative, but unfortunately about 25% of the genes for longQT are unidentified.
We continued to watch our son struggle on the rehab floor with his inability to see. It made OT, PT and speech so much more difficult because he was unable to do many of the tasks requested due to vision alone. After a couple of weeks of not being able to see a thing, we began to see little glimmers of hope. Our team of doctors had officially thought we had lost it when we would continuously try to make them believe that our son's vision may be returning. Against all odds our son was with us and against all odds our son's vision was returning. Oh how we loved the rehab floor! It was on this floor that we watched our son take his first steps(for a second time)! It was on this floor where the most healing took place! It was the floor were our son's vision began to return and we began to get comfortable with our "new" life. And most importantly It was on that floor where we all witnessed continued MIRACLES!
Although we will never understand why cardiac arrest had to happen twice in three days, or why our little boy had to endure so much. There will always be things in life that we will never understand. So we refuse to let this consume us. We feed off and learn from our son's perspective and his pure love of life. We know that there will be hurdles in our future, but we are doing our best to focus solely on today and how wonderful life is in this moment. We have learned that life is all about perspective.
We have also learned that no matter how stable you think life is, in the drop of a hat your life can be changed forever with no time to prepare. It is only in those vulnerable moments of deep darkness that you truly realize how precious and frail life is. Help someone today! You will never know the true gravity of an act of kindness until you are on the receiving end. We were fueled by endless prayers, and an unmeasurable support system. We learned quickly that this was not the case for everyone. The smallest of gestures can have the most profound affect on someone's heart. BE THE CHANGE! This eye opening experience has taught me many things. It has taught me to always learn from the past, live in the moment and BELIEVE in the future.