What that means that his aortic valve was extremely constricted, as in, smaller than it should have been in comparison to the rest of his heart. As if that weren't enough, the valve is also deformed: instead of being tricuspid (having three "leaflets" which look somewhat like a peace sign), his is bicuspid (having only two). The valve is also much thicker than a normal cardiac valve (making it less flexible and thus more difficult for it to open and close), and it was fused on either end, resulting in barely a quarter of his aortic valve being open to allow blood to circulate through it.
This was discovered shortly after he was born. We'd no clue that his heart was anything but perfect. As a matter of fact, we'd been warned that one of his kidneys was longer than the other and possibly slightly malformed, and that was the only thing we were prepared to deal with upon his birth! The news that my son would likely need a heart valve transplant in his life was not easy to digest. It was a little easier for me to deal with the news that he likely could not play vigorous sports like football or basketball, although sports that weren't so strenuous would be a possibility.
We were warned not to let him get angry, for fear of triggering a cardiac arrest. I also had to bring him in for monthly injections of a special medication to keep up his immune system, and was warned to get my family's flu vaccinations so that he didn't catch the flu through us.
In January, after having three months of weekly checkups and EKG's to make sure he wasn't going to have a heart attack, the pediatric cardiologist, whom I'll call Dr. L, told us that he wanted to perform a balloon valvuloplasty on Youngest very soon, because the surgeon whom he wanted to have do the eventual valve transplant was leaving the country for a few months, and Dr. L wanted to do the valvuloplasty while the surgeon was still local, just in case the valve didn't work as well after the procedure.
January 19th, 2007--- Youngest and I checked into the hospital in Portland for the procedure. He was three months and 9 days old. I couldn't bear to be away from him except for during the actual valvuloplasty, so I slept with him in his crib.
To make a long story short (too many details for tonight's posting!), the procedure went much better than expected. The valve popped right open exactly the way they'd wanted, and there was only trace leakage through it. Dr. L told me (and has told me every time I've seen him since) that if he hadn't seen Youngest before the procedure and after, he'd never have believed it was the same child. I asked him, "Do you believe in God?" He looked me dead in the eye and said, "I do now!"
(I'd mentioned to him beforehand that I had many friends of all faiths praying for him: LDS, Baptists, Catholic nuns, Jewish friends of my aunt's, etc. The LDS missionaries had even come over and given him a blessing before we drove to Portland. I joked that because of that, his valve hadn't had a chance to misbehave!)
Fast-forward to yesterday.
I took Youngest in to see Dr. L for his yearly checkup. Although he somewhat remembers his wonderful cardiologist, this is the first time he's ever really been interested in what was going on inside his body. He lay still for the EKG, watching the ultrasound screen intently and listening to the sound of his heartbeat. He had no dread, no anxiety about being there, and he did everything he was told to do.
Afterward, Dr. L told me again that he was simply amazed that the valve opened so perfectly, and that the leakage was still only minimal (up from "trace" two years ago). He decided that we could wait two years this time before our next checkup!
Everyone has greeted the news with joy and celebration. Older Son, overhearing me talking to MIL about it, asked me, "So does this mean Youngest doesn't have heart disease anymore?" Eyes twinkling, I reassured him that his little brother's heart is doing fine.
I was a bit concerned before the checkup because SIL wasn't able to come along and see what was going on with Youngest's heart, because I wanted her to understand what exactly was wrong, and what should be done if necessary. Yes, I was preparing for the worst. Seems I needn't have worried.
Now I'm telling myself that my sons will be living with me again by the time we have to attend the next cardiologist appointment.
God is good. ^_^
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