The first year I did Extra Life I did it because I love games. I’m a huge fan of anything that portrays games in a positive light, and so playing games to help children just seemed like a natural idea. I didn’t raise a whole lot of money, but I got a few friends to sign up, had a good time, and felt like I did a little bit of good for the world. That was in 2010.
In 2011, the second year I did Extra Life, my motivations were slightly different. I still loved games, but my wife was pregnant with our first child. So it seemed to me the cause was a little bit more personal. Again I didn’t raise a whole lot of money, but still had a good time with friends and felt like I did a good thing. I didn’t know it at the time, but doing this simple thing would help me through the toughest time in my life.
Our son Lucas was born on December 20th, right before Christmas, of 2011. To us he was perfect and we were very excited to be parents for the first time. As we were waiting to take him home from the hospital, his pediatrician was giving him one last check and she heard a heart murmur that concerned her. She came in to tell us he would be transferred to Akron Children’s Hospital a short ways away. I was told that having a kid would test my nerves, but I never thought I would be anywhere near this terrified, especially so soon into becoming a parent. Nothing could have prepared me for seeing our little baby bundled up on a stretcher, loaded into an ambulance, and driven off.
After he arrived at Akron Children’s he went through a lot of tests and we learned he was born with a congenital heart defect called TAPVR that would require him to have open-heart surgery to correct, but the doctor’s overall outlook was good. The next day we met with one of the two heart surgeons that would be doing the operation, Dr. Smith. He sat down with our family and us and explained what they would do and what we could expect. At the end of our meeting he said something I will never forget, “He’s scheduled for surgery on Monday, but if something were to happen that made us need to do something sooner, we will be here, and we will get it done. I don’t care if it is Christmas morning and I’m opening presents with my own kids, we will come in and get it done.” Later that night, something became obstructed and Lucas went from good to bad very fast. A lot of things went wrong simultaneously and it seemed like our luck just kept getting worse and worse. So at four in the morning on Christmas Eve my wife and I sat in the waiting room while they intubated Lucas and put him on a respirator. His surgery would have to happen that morning.
Within a couple of hours an entire team of people had arrived and got ready to make this happen. They came in on a day most people got to spend at home with their own families to spend it with ours. They weren't upset that they were there; they simply wanted to do what had to be done to help our little boy. Not only did they do it, but they did it with compassion and a great amount of heart. His surgery went well and at the end Dr. Smith came out to tell us how it had gone. After spending most of his Christmas Eve saving our child’s life, the best we could offer was a teary-eyed thank you. He cried, we cried, but for the first time in four days we were all smiling. He was at the hospital the next day on Christmas morning to check on Lucas and see how he was doing (as he would be every day for the entire time we were there), I just hope he got to open those presents with his kids before he came in!
After his surgery the doctors told us he would take time to recover and grow, so we waited. We thought we’d made it through the hardest part, but it didn’t get any easier. To see him day in and day out laying there hooked up to machines, struggling just to hang on was hard. His vitals were always visible on a monitor next to his bed, a constant reminded on how good or bad he was doing that day. On one particularly bad night when his heart rate was over 200 and wouldn’t come down the stress of everything finally overwhelmed me and my body shut down and I blacked out. After that night I spent some of my idle time escaping to one of my favorite places: video games. Bit.Trip Runner and Saints Row: The Third were what got me through when things would start to get overwhelming.
After he started to not get better the doctors told us he would need a tracheotomy and a feeding tube to allow him to stay on the ventilator and get his feeds longer term while hopefully his body caught up. We had to watch him go to surgery again. This time when he came back though he seemed to improve a lot. He wasn’t as sedated and seemed to like to be awake more and interact with us. As more time passed he still wasn’t improving as he should have. The doctors sat us down once again and let us know they were concerned with his lack of progress and they were going to try and get to the bottom of it. He went for a heart cath and they discovered what was wrong, two of his four pulmonary veins had stenosis and he would need a second heart surgery.
The surgery went well. It was hard to feel like we hadn’t started all over, but it was the only way for him to get better. This time around within days he was already showing improvement. Tubes and wires that took weeks to get rid of the first time were gone before we new it. He was coming off of more and more of his medications every week and for the first time the discussions with the doctors started to turn towards going home.
Overall we spent four months in the PICU before we ended up getting to take our little guy home. Throughout those four months we were continually surprised at the heart and the compassion of everyone who worked at the hospital. People there just seemed happiest whenever they were able to help in any way. I remember sitting in our room hearing laughing from the hallway and looking out to see a nurse race a kid down the hallway in a wheelchair because he had been stuck in his room for a while. It amazes me that this group of people could take one of the worst places a parent and kid could ever have to be, and make it a place so full of laughter and smiles. I remember thinking that I could never put up with the stress and the kind of decisions they had to make all the time. I asked one of our nurses about it and she said "This is just what I was born to do, I can't think of anything else I'd rather do."
When the time came and we got to take Lucas home, I can honestly say we were a bit sad to say goodbye to all of the people we had spent time with at the hospital. They had become like family to us, and even more importantly, they saved our little boy. There is no exaggeration in the statement that without them, he simply wouldn’t be with us today. Even though our story is a very personal one, I know it is not unique. The doctors, nurses, surgeons, and staff at the hospital continue to do the same amazing things they did for us for other families every day, and that's why I'm proud to be taking part in Extra Life for the fourth consecutive year to support this amazing hospital. Extra Life was one of the things that got me through our tough time. I took some small solace in knowing that I had helped the place that was helping my child. I knew my love and caring alone couldn’t fix him, but in some small way I helped facilitate those who could.
Last year Lucas helped me raise $1652 for Extra Life, and this year I’m hoping he’ll be able to help me do it again! So if you raise a little, or you raise a lot this year, just know that you are a hero to the people like me, and from our family to yours, thank you!