Cardiology Update

Had our checkup with Dr.. Shah today. Cardiology went reasonably well. A few more worries ahead, but we'll tackle them as they come up. Next big surgery could be as soon as a couple years to five years, ten if we are pushing our luck. Right side of the heart is growing thicker, this is to be expected as her heart continues to work harder. This is the same side that was shaved down at Stanford during the last surgery. The next procedure that they will have to do is to place pressure inside of her pulmonary artery conduit to be sure that her coronary arteries aren't affected. If her coronary arteries are affected she will always need open-heart surgery to replace the valve. If her coronary arteries are not affected during this test then she should be a candidate for the melody valve which is something that will be done through her femoral artery. She also has a right bundle branch block that were monitoring it is about the 120s now and they will get worried when it approaches 180s. Her valve leak is mild to moderate, and so her murmur is back again. We'll check back in 6 months. If she faints at any point, based on her anatomy, we need to get to hospital and notify cardiology ASAP. 

This isn't bad news. It's kinda great. But it doesn't feel that way. With cardiac kids, I feel like there is never a clear answer. When is surgery? Ask one time, it will be 10 years, the 2nd answer five years and maybe a third try, and you'll get 3 years. I know it's not a precise guess and that only Gracie's body decides when it's time to misbehave, but I feel like I'm always waiting for the shoe to drop. Even though there is absolutely nothing for me to stress about at this exact moment in time, I can't help but worry about what if and the next open heart surgery. She's beginning to ask questions, and say that she has what the doc is calling "phan chest pains". Anytime we go anywhere just grace and I, she assumes we're off to some cardiology needle-filled procedure. I have totally broken this little girls trust. If she asks me if she has to have surgery again, I hate that I don't have the answer for her, and I won't. Some things are just frustrating. Can I ever heal her fears and anxiety? Can anyone? I'm struggling, lately. It's as if now that the dust has settled physically for a bit, my emotions have finally become unraveled. I'm finally angry, and sad, and scared and hurt. And angry. And I don't want to be anymore. Made an appointment to talk with someone this month. She's also an adoptive special needs mom- hoping for some insight. For now, God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Amen.