Riley was born with DiGeorge Syndrome, a combination of severe heart defects called Tetralogy of Fallot with Pulmonary Atresia and Major Aorto-Pulmonary Collaterals, kidney failure, and multiple other medical problems, including severe cyclic vomiting syndrome, an abdominal hernia that was so big that we could see and feel his intestines under his skin, a submucosal cleft palate, and severely pronated feet (the opposite of clubbed feet). The doctors did not expect him to survive long after he was born. He has been fighting the battle of a lifetime since the moment he entered this world.
At 2 weeks old, he almost died when the main collateral artery supplying blood to his lungs completely collapsed. We were told to say goodbye to him, but miraculously, he survived emergency heart surgery and fought his way back to us. At 4 months old, a heart catheterization caused his femoral artery to become completely occluded. In an effort to save his frozen little leg, the doctors put him on a drip of TPA and he almost bled to death. At 5 months old, he survived a marathon, 12 hour heart surgery to repair all of his defects. He had his pulmonary valve replaced at 2 years old, and will need it replaced again as he grows. Shortly after his heart repair, he developed pulmonary hypertension. At 14 months old, he started to have trouble breathing and was placed on emergency dialysis. From 14 months of age, he has spent his entire life on either hemo or peritoneal dialysis. At 4 years old, he recieved a kidney transplant, but within one week, the new kidney clotted off and died. The surgeon had to rush him back into surgery to remove the new kidney, and during this surgery, his gallbladder was ripped open by the surgical clamps and had to be removed as well. Riley has survived countless other surgeries, many severe blood infections, and the worst case of peritonitis the doctors had ever seen. He also has episepsy and suffered through months of having up to 5 seizures every minute before the doctor got the epilepsy under control. He currently has no kidneys and is considered to be too high risk for a second kidney transplant, but he is almost completely out of access for a dialysis catheter. All of his major veins and arteries except for one in his groin, are occluded from previous catheters. We have been told that a catheter could probably only be placed in the groin temporarily, and not left there for long term dialysis, which is very concerning. Riley is on peritoneal dialysis for 10 hours every night at home, but we have been told that after a certain number of years, this will no longer be effective. If peritoneal dialysis stops working, we might not have any other access for long term dialysis.
Riley also has developmental delays, is completely non-verbal and communicates through sign language and pictures, and is 100% g-tube fed. He has suffered so much, but still, he wakes up every day with a smile on his face. He has the most amazing spirit and has taught us the true meaning of courage and love. He always has a hug and kiss for everyone and to him, no one is a stranger. He has such an amazing will to live that it brings me to tears. Please pray for him!
Credits: Prayers for Riley
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