Well today was one of those long awaited days. The day that you think you will get all the answers even though you know deep down inside that they will never have an answer. After 7 months of having our genetics appointment and 1 1/2 years post transplant we met with those that ran all of the test over the past 2 years. I can't believe that this month it will be 2 years since Kaidence got sick. Many of you know that we never received answers as to what really caused Kaidence's heart Failure. It is between a virus that we all caught or a glycogen storage disease. Now the glycogen storage disease was never in the picture until Kaidence received the "Berlin Heart." It was at that time that they took a piece of her heart and biopsied it and found glycogen. It was then that they took her off the transplant list (almost for good). After further biopsy of her leg muscle it was found that yes, there was glycogen. To explain about the glycogen storage disease, they range in types and severity. They can cause cardiomyopathy or serious muscle degeneration, however Kaidence tested negative for all of these forms. They sent off her heart after it was ex-planted but nothing stood out from what they already knew (it was huge and completely stretched out and just plain sick).
So we met with genetics today to try and figure out what happened and what are the chances of it happening again to any other children. Well, we don't have anymore information then we did back at the beginning. All genetic testing (glycogen related and other genetic testing) has been negative (which we are so very grateful for). However, they tell us that Kaidence may still have glycogen in her body and that if she does it is a glycogen disease that has not yet been discovered. The doctor told me that he spent the weekend going over Kaidence's chart and then he asked me if I had ANY idea how BIG her chart was? He said it took him the weekend to read through it. Then one of the interns said that the part she read was over 300 pages!!! He then proceeded to tell me that after reading K's chart he was very surprised that she looked as great as she does. He just kept saying that over and over, He said that he is VERY pleased and that things look very promising because she is developing so well and normally with the glycogen disease, she should be getting worse.
He said that IF she does have a glycogen storage disease that we had a 25% chance that it could pass on to other children. He seemed to think the 25% was the worst cases scenario but after seeing her today he is leaning more towards the virus attacking her heart but nothing can be ruled out for sure! However, at this point everything is pointing back to the virus. Mike, myself and the doctors have always felt that this is what caused her heart failure in the first place. So we will continue on with assuming it was a virus unless Kaidence takes a turn for the worse, but we aren't planning on that happening!!!
They will continue watching for more research to find a non-invasive way to test Kaidence to get answers as to what happened but that those answers will likely be years in the future. He will go over her chart again this week and then discuss her in the genetics meeting with all the other doctors. If anything comes up as a concern or to test for they will give us a call. Other than that as long as Kaidence is still growing and doing well we don't have to go back. Becaue they are so hard to get into, they did make an appointment for an optional follow up for February 2011 (who's is going to remind me of that one?)
I am very happy to let you know that the fact that K is in the 47th percentile was a HUGE plus for them today. That's right, as of the last week of May, K was barely in the 5th percentile. She weighed about 28.2 lbs (Thanks to her g-tube)but that was with her pants on. Her shirt was off because she threw up in the car on the way. I am usually good at catching the vomit while I am driving but I could not get over fast enough and had to empty the markers out of the crayon box because somebody took the puke bowl out of my car. What were they thinking!?! Needless to say she was half naked for our appointment, but she doesn't care. She is proud her her scars.
We have been so blessed and feel so humbled as to how well Kaidence has done. Everyday I am in awe at the fact that she is still here. I can't believe the miracle that Kaidence has beating in her chest and that because of her donor heart she IS living a very happy and normal life. She acts like any other toddler. I often wondered what life after transplant would be like. I have been afraid of her future for almost her whole life. I think I will always have a fear deep down in my heart but I am embracing the present. It is a beautiful time in Kaidence's life. A time for her to laugh, learn, love and grow. A time for us to truly know her. We have been blessed with this precious gift and we thank our Father in Heaven for this time we have been given to embrace Kaidence and her two big brothers! We love them with all of our hearts!!!
So we met with genetics today to try and figure out what happened and what are the chances of it happening again to any other children. Well, we don't have anymore information then we did back at the beginning. All genetic testing (glycogen related and other genetic testing) has been negative (which we are so very grateful for). However, they tell us that Kaidence may still have glycogen in her body and that if she does it is a glycogen disease that has not yet been discovered. The doctor told me that he spent the weekend going over Kaidence's chart and then he asked me if I had ANY idea how BIG her chart was? He said it took him the weekend to read through it. Then one of the interns said that the part she read was over 300 pages!!! He then proceeded to tell me that after reading K's chart he was very surprised that she looked as great as she does. He just kept saying that over and over, He said that he is VERY pleased and that things look very promising because she is developing so well and normally with the glycogen disease, she should be getting worse.
He said that IF she does have a glycogen storage disease that we had a 25% chance that it could pass on to other children. He seemed to think the 25% was the worst cases scenario but after seeing her today he is leaning more towards the virus attacking her heart but nothing can be ruled out for sure! However, at this point everything is pointing back to the virus. Mike, myself and the doctors have always felt that this is what caused her heart failure in the first place. So we will continue on with assuming it was a virus unless Kaidence takes a turn for the worse, but we aren't planning on that happening!!!
They will continue watching for more research to find a non-invasive way to test Kaidence to get answers as to what happened but that those answers will likely be years in the future. He will go over her chart again this week and then discuss her in the genetics meeting with all the other doctors. If anything comes up as a concern or to test for they will give us a call. Other than that as long as Kaidence is still growing and doing well we don't have to go back. Becaue they are so hard to get into, they did make an appointment for an optional follow up for February 2011 (who's is going to remind me of that one?)
I am very happy to let you know that the fact that K is in the 47th percentile was a HUGE plus for them today. That's right, as of the last week of May, K was barely in the 5th percentile. She weighed about 28.2 lbs (Thanks to her g-tube)but that was with her pants on. Her shirt was off because she threw up in the car on the way. I am usually good at catching the vomit while I am driving but I could not get over fast enough and had to empty the markers out of the crayon box because somebody took the puke bowl out of my car. What were they thinking!?! Needless to say she was half naked for our appointment, but she doesn't care. She is proud her her scars.
We have been so blessed and feel so humbled as to how well Kaidence has done. Everyday I am in awe at the fact that she is still here. I can't believe the miracle that Kaidence has beating in her chest and that because of her donor heart she IS living a very happy and normal life. She acts like any other toddler. I often wondered what life after transplant would be like. I have been afraid of her future for almost her whole life. I think I will always have a fear deep down in my heart but I am embracing the present. It is a beautiful time in Kaidence's life. A time for her to laugh, learn, love and grow. A time for us to truly know her. We have been blessed with this precious gift and we thank our Father in Heaven for this time we have been given to embrace Kaidence and her two big brothers! We love them with all of our hearts!!!
+(Custom).JPG)
