I've never been good about living for today. I've gotten much better after Brian's accident. My little reality check that no matter how much you try to prepare for things you can't always. And you never react the way you think. The call for Jaemin taught me that or reinforced what I already knew.
We're planning to go to Korea in 2013, but at this point we're not sure. Not sure if we should do it sooner or expect to do it later? Not sure at all.
We went to a new pediatric cardiologist today, as I wrote about last night. Cole has been seeing the same guy for 13 years. We have been told for the last several years (since he was 5) that 'if' he needed anything it would be open heart, but there would be no way to know. Then he always eluded to Cole never needing anything again after he entered adulthood. We also were told a couple of years ago that he could do any high school sports he wanted to after being told in all the previous years that he couldn't. I decided to let up on my overprotectedness this year and let him play football as he'd been wanting. I asked specifically about football.
Today we saw the new doc, after personal references with other patients' parents. We really liked him. He took so much time with us and talked to Cole....not me. He drew pictures of Cole's heart to explain to him and I what's going on. And when I asked about football, he said 'no contact sports'. So football is again out. He can play baseball with a chestguard and basketball is okay, but the constant running could be hard on him. Then, he proceeded to tell us something we'd never been told. Cole's valve had been completely replaced at surgery in 1997 and valves don't, apparently, last this long. He was astonished he was still okay after 13 years. They don't use the valve he has anymore and the new ones only have a life of about 7-10 years and have to be replaced via open-heart.
So, today we were told open-heart surgery IS coming. So he had to deal with being told he couldn't play the sport he wanted to and that this surgery is coming. We don't know when. He has no symptoms other than his right side is enlarged from the significant leakage from the valve, right now. We're doing an xray to see how enlarged it is. Then, next year he'll do a stress test, EKG, Echo, MRI and xray at the hospital. He'll be able to better determine when the surgery may be. So we literally don't know if it will be next week or 2 years from now. It all depends on that valve that has already exceeded it's lifespan.
I drove back to work after the appointment and went through periods of telling myself everything is fine to periods of feeling like crying. But, I won't. I'll leave that to him. And when I told him it was okay to cry and grieve his loss, he did. I feel so bad for him. I wish I could make him feel better, but right now there isn't anything I can do. I just hugged him and talked to him and of course, threw in the usual "you have to remember there's always a kid in a worse situation than you".
For now, I will just pray that, as usual, God will take care of us and keep us all safe and healthy. And that when the time comes He will guide the surgeon's hands as he did 13 years ago to take care of my son. And I will hold onto and remind Cole that the surgeon said that if a new procedure passes the FDA in a few years that this may be his last open-heart. Instead he could have it repaired by cath. Can you believe that? Valve replacement by cath. Amazing!
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