Tuesday, February 23, 2010

Lindsey's New Diagnoses

This last November we took Lindsey in for her regular heart check up. Because she is getting older they started doing more extensive testing to make sure everything is functioning, as it is suppose to. She sat completely still for an hour while she got her Echo done, and was amazing. She has a runny nose that day and had to wear a mask at Primary Children’s, and she was not happy about it. I decided to wear a mask with her, and it made her feel a little better. I thought for sure she was just going to be a bear the rest of the time, but she was super brave through all the testing. At the end of the Echo the lady doing the testing went and got another guy to come in and take some more specific shots. This got me a little worried. When the doctor came in he told us that Lindsey was doing excellent. She was very healthy and that her arch and valve where doing remarkably well. And they were very encouraged by the results. However he then informed us that they had something that was more concerning. They had discovered thought the Echo that Lindsey has Non-Compaction Cardiomyopathy. This is where the left vetracal of her heart is deformed and will eventually stop working correctly. The defect is relativity new and rare. They only diagnose about two cases a year. Hopefully when her heart starts to fail it can be controlled with medicine and then worst-case scenario of course it heart transplant.

Automatically I became a stress case. Jeff is of course handled it all just fine. It makes me laugh because he is a pessimist and I’m an optimist, but we are so different when it comes to worrying about Lindsey. The diagnoses kind of put me in a depression for a couple of months. I feel I'm handling it better now and am looking more on the positive side. But I'm her Mom and will worry every day I'm sure. It has also lead to a lot of questions from Lindsey, and of course Gavin & Marissa. We have been having discussions and I think they are kind of understanding thing a little more, but they are young and I don’t feel like they need to know all the facts yet. Lindsey however is happy and healthy and doing great! She is enjoying Kindergarten and loves being a princess.


Melbell said...

Oh Jess! Hugs from one street over! I am really looking forward to our lunch in March :)

Melissa said...

Crazy! These heart kids always are full of surprises. I think she would love meeting other kids with whom she could swap "war stories". We have a lot of great events this summer, including a camp. (www.intermountainhealinghearts.org) Plus, then I'd get to see you. It's been a long time!