Electric Heart
Shortly after being shocked
When your son with a heart condition calls you in the afternoon and tells you his ICD shocked him while he was at a pool party, you freak out and prepare to hunker down at the ER and maybe follow an ambulance to the Mayo Clinic three hours away. But the very savvy son hooks himself up to his device transmitter and calls his cardiologist who takes a few to study the reading and calls back to say, "Stay outta the pool", you start to wonder if you are in the twilight zone. Who knew low current from lights and pumps in a swimming pool could interfere with a lifesaving device and shock the #@!! out of the person it's implanted in?
Back in June, we took Nicholas to the Mayo Clinic in Jacksonville on the advice of his local cardiologist. He was questioning the need for the device which we learned was attached to a recalled lead that had been in his artery for over 12 years. They are studying him there and we'll go back in December to plot a course for his care going forward.
But let's go back in time for now...
In 2004, my youngest son started having fainting spells every few months. A diagnosis finally came after 7 or 8 of these episodes. The last time it happened, he was with his Uncle Danny who coached Little League baseball. Nicholas wasn't on the team but he liked hanging in the dugout with his Uncle and the players. One afternoon after a game, Nicholas wanted to run bases so round and round he went. Just as he was rounding third, he face planted and stay there, did not move, did not breathe.
Did not breathe.
As he was turning blue, Uncle was desperately shaking him while one of the dads ran to find a Doctor whose son was playing on the field next to where Nicholas went down. Just before Uncle prepared to give him his breath, my baby took a deep one of his own, opened his eyes and tried to speak with a mouth full of sand.
Uncle brought him home, carrying him like a wounded soldier, his thin body draped across his Uncle's strong arms. Loving the attention and feeling right as rain again, a sandy smile stayed on his lips while Uncle laid him on the sofa. Then the tears came. Not from Nicholas, but from Danny who loved him as if he were his own son.
Nicholas with his beloved "Uncle Danny"
This time, and for the 7th or 8th time, we took him to his Peidiatrician and said we weren't leaving without answers. Previously his condition was dismissed as dehydration, stress, diet, and any number of things that might have sounded plausible. Afterall, he always got up a few seconds after he fainted. Once, the doctor touched on issues with the electrical system of the heart but waved that idea away being that it's such a rare disease. So this last visit, we demanded a referral to a cardiologist.
Nichoals's appointment came a few days later. And guess what? Nothing showed up on his EKG. This doctor didn't dismiss us away though. He set an appointment for a sonogram at the hospital which only showed a perfectly formed and beautiful heart inside the chest of my eight year old. So next, we were scheduled for a stress test where Nicholas would run on a treadmill while hooked up to a EKG machine. He was actually looking forward to it!
A couple of days before that appointment, I got a call from the cardiologist which was strange because it was almost 9:00 at night. He said he kept staring at the EKG and he finally, finally found something that might point to Long QT Syndrome. He wanted us to go to Wolfson's Children's Hospital in Jacksonville, FL just as soon as possible.
Within two days, we were on our way. My husband was out of town on business, way up North and wasn't due home for several days. So Uncle Danny drove us there.
After a long day of testing, it was determined that he did indeed have this condition and that his case was severe enough that not only would he be placed on heart medication, but would undergo surgery to implant a cardiac defibrillator. While we were being briefed on the upcoming event, Nicholas played with the toys in the room. Danny and I sat in front of the doctor with our jaws on the floor and tears in all four eyes.
The doctor called Nicholas over and explained to him what would occur. He plucked an ICD model off his wall and let him hold it, telling him one just like it would be placed inside his chest to help his heart beat correctly. Nicholas examined this bar of hotel soap sized piece of equipment, turning it over running his finger across the material on the back of it that was there to hold it on the doctor's wall. Then he wrinkled his little nose, looked up at the doctor and said, "You're going to cut me open and stick this on my heart with some Velcro?"
Those words caused a much needed eruption of laugher from the three adults in the room. It had been a long, long day. I still had to call and break the news to his dad that our baby's heart wasn't perfect afterall.
to be continued...