It's hard to believe it has been 1 year since Santi had the Fontan, his third open heart surgery. Santi has recovered beautifully from his surgery and his heart function is excellent. Words every heart family longs to hear. We are down to annual cardiology visits, which is also phenomenal for a young HLHSer. Santi's highlight to our (4 hour!) appointment, was getting this cool Hot Wheels car carrier. It certainly helped us get through the last hour of waiting around. We were sent home in a Holter Monitor (24 hour EKG) which is pretty standard. Santi will wear it for a day, then I mail it back to the doctor and they read his heart rhythms. My little trooper did great today and we are happy to hear his heart is doing well!
It's been so long since I've posted anything heart related, I kind of forgot this is an HLHS blog!
Santi's last open heart surgery (the Glenn) was NINE months ago today! (I can't believe it!) Our main goal after the Glenn was to keep him healthy. No colds, no flu, no cough, no hospital visits. And you know what? We did it! I don't know if it's luck or if it's because we are agoraphobic germaphobes but we managed to keep him healthy amidst a killer cold and flu season. YAY!
Yesterday we had an appointment at Rady Childrens Hospital in San Diego. He had a sedated echo cardiogram and a check up with his cardiologist. When we were first told that the echo would be "sedated" we were a little put off. CHLA never suggested that his echos be sedated. But honestly, it wasn't that bad. They gave him some cough syrup type sleep medicine orally. He cuddled up on me and dosed off in 9 minutes. I laid him on the table and they proceeded with the echo (an ultrasound of the heart), which took about 50 minutes. When it was over, we woke him up with tickles. We had one sweet little drunk money on our hands! I know its sad to see your kids medicated, but it was also really cute. He came out of the sedation very smoothly, no fussiness, no nausea. Then we met with the cardiologist to get the results.
The Doctor had good news, potentially great news and bad news. The good news is that his heart looks good. It's squeezing well, the valves have very little leakage and there was no mention of scar tissue from his surgeries. The potentially GREAT news is that his left ventricle is growing. (wait, WHAT?!) And because it's growing, he could maybe, possibly, potentially be a candidate for a bi-ventricle repair. AKA- WHOLE HEART REPAIR! Mind officially blown.
So until yesterday, Santi's path would have led him to the Fontan. The Fontan is commonly the third and hopefully final surgery most HLHS kids have when they are about 3 years old. But now we know there might be another option for him. We just have to be patient, do more research and see what they find in his next cath. Which takes me to the bad news.
He has to go in for a Cardiac Catheterization, soon. Like within the next few weeks. Remember what happened at his last cath? Yeah, our over night procedure turned into 14 days of IV antibiotics and an early Glenn! 27 days at CHLA.
Anywho, during the echo they saw some "collaterals," which are new blood vessels he doesn't need and could potentially cause problems. So they want him to come in for a cath to get the collaterals coiled and also to observe his heart function from the inside.
What a day! So much to digest and prepare for. After our appointment Santi was a little sleepy, but pretty much back to himself by bath time.