On August 8th, I took Tyler to the ER. He wasn't eating well, sleeping all the time, and started throwing up. They did a spinal tap to check for spinal meningitis and after it tested positive, Tyler was admitted to the hospital. That began a month long stay that would be the worst of our lives. Within 24 hours, Tyler started having trouble breathing and was intubated in the middle of the night. We were moved to a private room in the PICU unit that soon became our home.
Every day, the doctors would tell us a different organ in Tyler's body was shutting down. His liver, his kidney, his lungs, etc. We'd take one step forward and what seemed like 5 backwards. He was on the ventilator for a couple of days before the doctors decided to try a different type of ventilator. This machine shook his whole body in an effort to get his systems to start working. His body quickly retained water and he didn't even look like our Tyler anymore. The nurses rotated his body frequently to keep the pressure from being too much on one side. Touching him left indentations in his swollen body. After one particularly hard day of bad news, I asked Tyler's pediatrician (best pediatrician we could have ever hoped for) if there was any good news that we could hold on to. His response was that Tyler was as sick as he could possibly be.
It had been determined that Tyler had contracted two different common summer viruses. How this happened we'll never know. The viruses were attacking his body and each organ one by one.
As all of this is going on, we were fervently praying along with everyone in our church and community. Slowly, we started getting good news. I've never been so excited over someone peeing as I was to see Tyler's urine filling up his catheter tubing! The doctor came in for daily rounds and the first thing I said was, "We have pee!"
I became friends with all of the nurses on the PICU floor and they became bonded with Tyler. We watched day after day as other kids came and left the floor. Finally, the day came when Tyler was ready to be extubated. He did fine overnight but early the next morning, I started noticing that he was having trouble breathing and his skin was starting to turn blotchy. He was quickly going down hill and I could sense from the nurses this was not a good sign. By mid morning, Tyler was intubated again and we were set back an entire week. The doctor's felt they had moved too fast and dropped off too many of his medications.
So, three days later, we tried again. This time was a success!
The one organ that had not bounced back was Tyler's heart. He had developed a condition called Dilated cardiomyopathy. His heart didn't pump blood as it should and needed the help of many medications. It really didn't hit me in the hospital the total impact of this disease. It wasn't until weeks later that it really sunk in. I was just glad that my little boy was eating again and looking around and crying!
