Friday, December 19, 2008


So finally, after almost exactly a year later we have answers as to Kaidence's Cardiomyopathy. Kaidence became ill July 2007 and we have not had any definite to what happened or caused it. I have asked the cardiologist many times in hopes of finding out what pathology found from her old heart after she was transplanted with her new one. It was sent out and we had hoped to find some answers. Cardiology would then in turn call her genetics doctor and was told that they have not heard any results. So Kaidence's WONDERFUL pediatrician decided to make a phone call to pathology. Apparently the results have been available since December of last year. They had the results 3 days after her transplant.


Kaidence's old heart showed NO evidence of a "Glycogen Storage Disease" and NO obvious eveidence that her Cardiomyopathy is genetically linked.

I am so excited about the results and feel so blessed once again to finally have answers. For the last year and a half I have stressed and worried about my boys. Would they get the Cardiomyopathy? Is it genetic? Should we have more kids? I just had echo's done because we still had no answers. I decided I would rather be out the money for the boys echos and have the peace of mind that I needed. How grateful I am that we were once again blessed. I finally feel that this offers some closer for us.

If you remember back to the days after the "Berlin Heart" you will remember that they thought Kaidence had a "Glycogen Storage Disease" because they found Glycogen in a piece of her heart. They told me that they could not waste a heart on Kaidence because if she did have this disease, she would wastes away and eventually die. It would be more ethical to give the heart to a child that would have a chance at a healthy, normal life. They then took her off the transplant list once again (I was devastated). They cut her thigh and took a piece of muscle from her leg and ran tests on it. The tests took days and I could not sleep. What was I going to do? How was I going to pull the plug on my healthy baby? The only thing keeping her alive at this point was a machine that was plugged into the wall. The test from her thigh came back showing that she did have glycogen in her muscle but not severely enough to keep her from getting a new heart. That was one of the best days ever. I remember my mom took me to "Hires" and I had a Coke, Big H and Onion rings. I hadn't eaten in days and finally felt like a weight had been lifted from me. I once again had hope. We now think that the Glycogen had presented itself in her heart and other muscles in her body because she was so sick. Her body was shutting down and unable to metabolize what it needed to, so it was just building up.

To see these results now and to think that Kaidence was taken off the list, possibly forever for a disease that she never had, makes my stomach sick. Once again, I have no doubt that the Lord does have his hands in everything.

Sorry, I know that how Kaidence got sick has made many very nervous and paranoid for their own families and I can't blame them. But you have to remeber that her illness was a rare thing. Life still has to go on. All we can do is be respectful to others when our own kids are sick and keep them away and hope that others will do the same.

So Kaidence did get the Cardiomyopathy from whatever stomach bug our family had. I cannot sit and play the "what if game" as to why she got sick. I cannot place the blame on anyone or anything. It won't make things better and I have no doubt in my mind that this is part of Kaidence's earthly mission. Too many lives have been touched for the good, including our own.


Jenn said...

Oh, my goodness! I am so excited for you guys. We are so relieved with you and happy that you can have some closure and peace of mind. Sounds like you also have a great pediatrician! We love you guys and think of you so much. Thanks for being such wonderful examples to us this past year, and for sharing Kaidence to help teach us and show us miracles happen everyday! Hope that your week is filled with joy and wonder!