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Had our annual appt (not so good news, but not bad news)


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December 12th, 2009, 03:47 PM
Platinum Supermommy
Join Date: Oct 2004
Location: *queen city* of North Carolina
Posts: 9,497
I'm really torn about how to take DD's cardio appt this past week. And of course google doesn't help but I want to learn and be aware of DD's condition. I posted in my playroom a little bit, but I'm starting to get really worried about DD.

DD said Sunday night, that her heart hurt and grabbed her chest. Now she knows she has a heart defect - but NEVER has she grabbed her chest like that. Her heart was racing/pouding. Of course my smart self didn't check her pulse (we were driving and I was in the passenger seat and couldn't reach to check). She was fine by the time we go to our desintation though. Her heart felt like it was beating normally again and pulse was normal.
We had our annual appt schedule for the 28th so I bumped it up with their reccomendation to be seen sooner. So away we went. We didn't see our usual cardiologist, but another one within the practice.
DD as usual was great! Her EKG was consistant with the one at 1 yr and 2 yrs old. The ultrasound is where it got tricky. Apparently, there is more wrong with DD's heart then just aortic stenosis which they never told me. Something about the structure of the actual valve itself - but very complex and the terminology went way over my head and even when he tried to explain it still went over my head. Something about the actual SHAPE of the valve. Well, I guess at her 1 year old appt they noticed a blood vessle form that isn't supposed to be there between two of the three leaflets in her heart (the stationary one and one next to it). The (new) cardio we saw this time was very surprised they didn't mention it to me at her one year old appt. They didn't notice it on her 2 year old echo, but they noticed it this time again. Well, I find that slightly off they didn't notice it at the 2 year old visit if it was there the visit before and the visit after. But whatever! Apparently she now has aortic insufficiency. Because of the blood vessle, the leaflets in her aortic valve are not closing all the way which is causing blood to leak.
On top of that, she's having symptoms!! She's been asymptomatic until well, Sunday - or at least verbally. I'm scared to death, because all the statistics I can find say once they start showing symptoms the chances of open heart surgery for a valve replacement or bolloning procedure increase dramatically. I'm scared of that. She's my baby, and I'm terrified about her having to go through that. She said it again that her heart hurt and grabbed her chest. of course I was driving so I couldn't check her - but it was still racing a bit but pulse was ok. We've got instructions to call the cardiologist and go to ER if her pulse rate goes above 200 beats per minute. And if its 150-180 to give them a call the next business day. (Of course what goes on between 180-200 I have no idea :/ ). And of course keep her drinking tons of fluids and avoid dehydration at all costs. Thats great, but at preschool she hardly drinks anything! And at home its the same deal! I keep a water bottle avilable to her all day - but she hardly drinks anything. Same at school.
I just need some reassurance. I was not expecting to get all this news. And of course I'm supposed to be the strong medical person between DH and I and I'm scared to death. The cardiologist doesn't seem worried at ALL, and says that they will keep doing the echo b/c of the AI but the AS is stable. He said, which sounds kind of backwards, "the good news is, the heart muscle in her aortic valve has not increased any since she was one. which is a very good sign." Of course the AI, is NOT a good sign in my book - but is a complication of the AS.
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