Annual Cardiology Appointment

We took Alex down to Children's last week for his annual Cardiology appointment. (He goes yearly to make sure he isn't showing signs of developing my condition, since we don't know much about my condition due to the rarity of it.) Alex did awesome! He didn't cry at all and was so brave during everything. He even said "More doctor" and wanted Dr. Knilans to check him again when he was all done. We got good news and bad news while we were there. The good news is that his EKG is normal, for now. The bad news is that every EKG he's had has shown a progression. Each EKG (one when he was born, then at a year old, then in May when he had his breath holding spell and then this one in August) is getting closer and closer to the funky pattern in my EKG. He is still well within the range of normal, but if the EKG continues to change at the same rate he will hit the abnormal range in about a year and a half or two years.

There is a part of an EKG called the "Q wave." Kids are allowed to have (small) Q waves, adults are not. I have a huge Q wave. Adam (my brother) has a Q wave as well, but it's not quite as big. My heart flips out and stops very easily in testing situations, whereas my brother's heart does not. All 3 of my nephews have Q waves (normal-ish since they're kids) and now Alex does as well. If a general cardiologist looks at the boys EKGs they pronounce them fine, since the Q waves are still within the normal range. When an Electrophysiologist looks at them in conjuction with mine, they're no longer so normal. We're looking at having to continue cardiac testing on all of our boys. We just don't know if their little hearts will repond like mine does and have a tendancy towards V-fib and cardiac arrest, or if they will respond like Adam's and be "fine."

Our plan for now is to take Alex to see Dr. Knilans every 6 months, instead of every year. He'll keep an eye on his EKG and as soon as it hits even borderline abnormal we will do an EP study (they'll put him to sleep and do all sorts of things to his heart to see how it responds. It was diagnostic in my case--anything they did made my heart go into v-fib and/or cardiac arrest). That's a whole other subject for another day....Mama can't quite think about that just yet. :( Depending on the EP study....who knows? He may be defibrillator bound, or not. There's just no telling. We will also keep a close eye on Noah and see if his EKG progresses towards mine as well.

Through all of this, God is good. God knows my son and knows his heart. God knows the trials he will go through and is already prepared to be there and hold him through it all. God saved me and I have no doubt that He will save my son, if it's in His plan. I have to trust in His providence and trust that He loves Alex infinitely more than I do.