Last summer in July at just 8 months old, Kaiden was diagnosed with a
heart disease called Hypertrophic Cardiomyopathy which causes an
enlargement of the heart due to abnormally thick muscle. The
cardiologists and geneticists were 120% sure he had a fatal genetic
disease called Pompe. After running genetic tests 4-5 times it came
back negative for Pompe and they were unable to link the disease to
anything genetic. So they gave up on him. They did not want to run
anymore tests. They told us he is not eligible for a heart transplant
because he has Cerebral Palsy. Apparently in order to receive a
transplant of any kind, every other organ must be working properly. So
based on a neurological standpoint, he is not eligible. They also told
us without a transplant, he has 5-10 years to live.
Finally, on May 23rd, we went to a different cardiologist for a
second opinion on his heart. We received the worst news yet. Due to
all of the muscle in his heart it has to pump 2x as fast to get all of
the blood from his left ventricle throughout the rest of his body,
brain, and lungs. He is on a beta blocker called Propanolol to slow
his heart rate to allow his left ventricle enough time to pump the
blood before sending it off. However, the passage that allows the
blood to flow throughout his entire body is very narrow, it is
actually almost closed. When this passage closes the blood will stop
flowing and he will suffer from cardiac arrest then death. The doctor
told us this is the worst case of that disease that they have ever
seen. There is an open heart surgery they could perform to cut some of
the muscle but Kaiden is so high risk that there is an 85% mortality
rate and they believe if he did survive it the muscle would grow back
within 2 weeks. The only option he has is to get a transplant. We are
currently working on getting a referral to the hospital in Little
Rock, Arkansas for a transplant evaluation. Kaiden's insurance is for
the state of Tennessee only so if he is approved for the transplant
then we will have to fight them to help us.
Right now we are in a waiting game. All we can do is spend all
of our time with him and hope for a miracle. He has been through so
much in his short life but he continues to thrive. Unless we see him
give up then we will continue to fight for him. He has numerous
appointments monthly along with countless therapies and we have to
travel all the time. We continue to pray daily and we know God can
hear us. There is no time limit that can be put on Kaiden's life, omly
he and God can make that choice. We have so many prayer warriors on
our side and we are so grateful for everyone who has joined us on this
journey. Please continue to pray for our sweet boy.
For anyone who like updates on Kaiden, you can visit him at https://www.facebook.com/HopeForKaiden