In a Mother's Own Words
Rylan Karrer (front and center) surrounded by his family and his idol, Andre Johnson of the Houston Texans.
Rylan was so blessed to get his new heart on April 20, which happened to be both Easter and his older brother’s birthday. We had steps forward and steps back at the hospital – it was quite the dance, but then he started doing really well and was released the middle of May. Life post-transplant has been quite the whirlwind. Since the transplant, we have gone back and forth to Texas Children’s Hospital for a total of five catheterizations/biopsies to make sure his new heart is working well with his body. We have been so fortunate that his rejection scores have been either zero or 1R – and those are perfect numbers!
Since Rylan was not allowed to do any type of physical activity for over two and a half years while he waited for a transplant, and with the toll that the restrictive cardiomyopathy had on his body, he lost a lot of muscle and strength. He is going to physical and occupational therapy weekly and has made huge improvements in both areas as well as with his balance.
I cannot even explain in words the joy to watch him go from being in a wheelchair to actually running and jumping around like children should be able to play. The things he has done since transplant: shoot hoops, play croquet, kick the soccer ball around, run, hop, skip, ride a three-wheeled bicycle (working on balance to use a two-wheeled bicycle), taken long walks to build endurance, and probably the funniest is he sometimes lays on the couch with his head dangling over the side because before the transplant he could not lay flat – especially not with his head lower than his body because it caused too much swelling. In other words: he gets to act like a typical 11-year-old boy! He now belly laughs like he used to laugh … we haven’t heard that true laugh for so long.
We didn’t think that Rylan would be released to attend the Transplant Games of America, which was sad since they were in Houston; however, he was not only able to attend, he was allowed to participate in the opening ceremonies and walk in the 5K. Unfortunately, he had hurt his foot a few days before the walk when he jumped out of the car and landed wrong, so he couldn’t walk the whole event and had to ride for part of it. It was wonderful that he was able to participate and he made so many new memories.
This is all due to the miracle of transplantation. We are so thankful for the doctors, nurses, for LifeGift, the blood center, the hospital, all the volunteers promoting organ donation, but especially the donor family. There is not a day that goes by that we do not think of his donor and the donor family. Without the selfless gift they gave my child, he would not be able to do any of these things. How can you properly say thank you for giving your child a second chance at life. We just want them to know how appreciative we are and that their child is living on through Rylan and we will make them proud.
Andrew and Kristina Karrer with their son, Rylan, at the Transplant Games of America 5K on July 12.