One Year Ago Today

Today is the day. It has officially been one full year since our lives changed.

One year ago this morning, Sam woke up and felt warm to me. I took his temperature and it was 102.5F. I brought him to Bill and told him he had a fever. In my ignorance, I dressed Sam in sweat pants, thinking it would keep him from shivering. (If you are reading this and have an infant or toddler, please don't dress them in any clothes if they have a high fever. Take off all their clothes and keep them cool.) Bill took Sam over to the living room and sat him on his lap to watch some TV. Keep in mind that Sam wasn't even 11 months at this point, so he was very little. He was crawling, but not standing yet.

I'm sure it was the sweat pants, but Sam had a fever spike and he started to have a seizure on Bill's lap. I was in the kitchen when Bill called to me and said, "Sam is having a seizure, call 911." I flipped out. I ran into the room with the phone screaming, "he's having a seizure" the whole time. I dialed 911, but couldn't talk, because I was hysterical.

Bill laid Sam on his side in the sun room of the house and grabbed the phone from me. I proceeded to yell at Sam and tell him not to leave me. His eyes were rolled up in his head and he was moaning, as if he was having a very bad bowel movement. His arms were completely rigid too.

I'll never forget it all. Bill was calmly explaining the situation, but I was so hysterical the responder thought he was too. He finally punched me in my arm and told me to get a hold of myself.

When the EMS got to our home, I was hysterical again, trying to explain what happened. They actually removed me from the situation because of my hysterics. They handed me a piece of paper and asked me to write down everything that happened - and I knew when they did that they were trying to keep me busy, but I did it anyway. One of the gentlemen told me this would probably be only a bad memory and would never happen again.

I rode with Sam, who was completely out of it all the way to the hospital. When we got there, they just told us it was a febrile seizure and to give him meds to keep the temp down. He was still very out of it and slept for a long time.

We went home, ordered pizza, and started calming down a bit. While I was nursing Sam before bed, I could physically feel his temperature increasing and told Bill he was having a fever spike. Right after I said that, Sam vomited and I ran upstairs to get him changed - that's when he started seizing again. We called 911 again.

Sam vomited two or three more times. Our neighbors were home this time and came over to make sure everything was okay. Danny of Six Forks EMS was one of the EMTs on call. They took everything very seriously and this time I didn't freak out in front of them because I didn't want to be separated from him.

While we were in the ambulance, Danny couldn't get a pulse ox on Sam, so he took an ECG instead. That's when he saw he was in VTAC. The lights in the ambulance came on and we got to Rex very quickly. The doctors at Rex didn't believe it was true though - they said they thought it was an artifact, something that occurred because of bumps in the road. Not so.

Our pediatricians office sent the doctor on-call and she came in to talk to us. She saw the ECG strip laying on the bed next to Sam, who by this point had had two or three more VTACs. She said, "you'd better hope that's a mistake," referring to the ECG. I didn't like her bedside manner, but after she saw the ECG, she did everything she could to get us transferred. You see, Rex said they couldn't monitor Sam on a heart monitor.

Wake Med was full. Duke was full. UNC was full. She finally called UNC again and told them exactly what happened and how serious this was. Fortunately for us, Dr. Buck was there that evening and he knew that complex (more than one) febrile seizures are an indication of Brugada Syndrome.

We were transferred to UNC - Sam had to go by himself in the ambulance and Bill and I tried to follow. When I made it to UNC, it was around midnight or one in the morning. We went through all the security checks and when I got up to the Fort that was the heart unit, I heard my baby crying. I wasn't even allowed to nurse him.

We settled in for an undetermined amount of time. My brother came to the hospital too.

They monitored Sam for several days, but because he had enough Tylenol and Motrin in him at this point, he didn't have any more fevers. Therefore, he didn't have any more arrhythmias.

We stayed for about five days at UNC. I can remember the day we left, Dr. Robinson, another cardiologist, came in and told us they were checking Sam for Long QT Syndrome or Brugada Syndrome. We had never heard of either. We left the hospital on Wednesday and had an appointment with Dr. Buck (who we still hadn't seen yet) for the following Friday.

Want to hear more? If you do, I'll share with you what happened next - if you haven't heard the story already, it'll blow your socks off.