Hello everyone. I hope you are all well. I know you have been waiting on updates.
-Kendalls heart condition is starting to affect her liver and her lung so a heart transplant is highly recommended. She is in “heart failure” and so she is going on the transplant list. When I heard “heart failure” I immediately thought that she was worse than we thought. But they explained to us they use those words for most patients that have a heart that isn’t functioning the way that it is supposed to. They said that from their standpoint they have considered her a “heart failure” patient since she was a baby because of the heart defect she was born with. That was our first time hearing them use those particular words. Even though it was hard to hear those words, I am glad it is nothing new, just new to us.
-cardiologist is setting up conferences with other specialists to get their opinion if she needs a lung and liver transplant too. Dr said if we continue to give medications and not do the transplant, her heart will stop functioning in 1- 1 1/2 years. After that was stated there is no way we would not agree to the heart transplant.
-if she needs a heart heart transplant only, surgery can be done at Children’s Hospital in Detroit
-if she needs the other organs too, they only perform the surgeries in a few other states so we would have to relocate there temporarily because you only have a few hours to get to the hospital once the organ(s) become available.
-basically right now we are waiting to hear that the insurance will approve everything that is needed. After that we will meet with the liver and lung specialists so that they can do their own tests and evaluations. If they decide that her current lung and liver will get better just by getting a new heart and better blood flow, then she will only have the heart transplant.
She is not critical so she does not need to be in the hospital. She is still doing everything she was actively doing before. Only difference now is she gets tired more easily and short of breath.
For all of these years my hopes and prayers were that this heart would function and be “good enough” to keep her healthy so that she could function and have a good quality of life every single day. My fears about a transplant were about rejection, infection, the surgery itself and all of the negative things that come along with it. (It’s the nurse in me. We know more about the things that parents/patients don’t know. Sometimes it’s good to know, sometimes you know too much). Now that she is starting to have symptoms, my new hope and prayer is that she will get a brand new, fully functioning heart, no defects, that is perfect for her. That she will thrive and feel better than she has ever felt in her life. Her entire journey from the beginning has led up to this moment. All of the surgeries, miracles, and scars have had a purpose. I hope her story has changed your life in some way and thank you for your love and support along the way. Her journey continues……..God has a plan and we are confident that He knows best.
I have always pictured her heart as whole(with 4 chambers) even when I look at the ultrasound pictures that always shows 3 chambers. Now I know why I chose the name “Kendall’s Whole Heart” way back then. Makes perfect sense now!!!!
Of course we are soliciting your prayers for faith, hope, peace, and miracles.
Also for our family’s mental, emotional, physical, and spiritual state to endure through the process. It's a mountain to us but not too big for God ❤️❤️
Cewanda
xoxoxoxoxoxoxoxoxoxoxo