Hi. I am Kristin Graham, Kylan’s mom. Kylan was born with a tethered spine. When he was nine months old, he had his first spinal surgery; a simple Lumbar Laminectomy that was scheduled for one and a half/two hours. It lasted 17 ½ hours. His nerve endings had corkscrewed and calcified, and according to his surgeon “it was like chipping away at cement.” Some of his nerve endings were translucent – dead. We had no idea what areas of his little body those nerve endings would affect. It was not until he got older that we found out that his legs and bladder were affected. When he was two, he had a second spinal surgery – another Lumbar Laminectomy. His nerve endings had reattached in the scar tissue from the first surgery. This one, thankfully, only lasted an hour and a half and after a week in the ICU we were able to go home. It was shortly after that we noticed he was having some issues with potty training. Unfortunately, we were unable to find a pediatric urologist that would accept our military insurance. Finally, a year later, the same urologist we tried getting him in to see originally accepted our insurance. Unfortunately, by that time, it was too late. His bladder was already damaged. He was put on medication to control the bladder and followed up with yearly MRI exams and other tests. Because of the damage done to the nerve endings that affected his legs he has to wear orthopedic boots and shoes to help him walk and to better protect his legs and feet. He has no feeling in his right foot and tends to drag it. Therefore, he cannot be outside, go to the pool or anything else without wearing his orthotic boots/leg braces. If he does, he can (and will) tear the skin on his foot and not feel it, which has in the past caused huge holes in his foot.
Even though Kylan has these limitations with his legs, he has been active in baseball since he was four years old. When he was in middle school, he played basketball. He loves to bowl, fish, swim and absolutely loves archery. He is also the basketball manager/videographer for his high school girls’ basketball team. Nothing stops my son. He is so strong and resilient. He amazes me every day. He lets nothing get him down. If he strikes out at the plate, or gets thrown out on the bases, he just runs off to the dugout with a smile on his face. He’s just happy that he can play.
Kylan has had yearly MRI and Urodynamic exams since the young age of two. His urologist in Spokane told us that either this year or next he would need to have bladder augmentation surgery. We talked about it as a family and decided, why prolong the inevitable? Let’s just get it done now. His surgery was scheduled for June 6, 2023. We had wanted to wait until the end of summer, that way he could finish the school year and have somewhat of a summer vacation before having surgery. Unfortunately, when you are trying to schedule a procedure around three surgeons schedules, that doesn’t always work out as planned. And thankfully, it didn’t. We went in for the surgery June 6. It was scheduled for about 8 hours. Six and a half hours later the three surgeons came out and told us everything went well! No issues, no concerns, no significant blood loss. It was the perfect procedure. We met him in recovery and then went to his room. The next morning, however, everything went downhill, and went downhill fast! His hemoglobin was at 5, he was in stage five kidney failure and needed a blood transfusion, and fast. Thankfully they were able to get two bags of blood from the same donor and he recovered quickly. We had two different emotions plaguing on us at the same time…guilt because we didn’t see the warning signs, and the other, relief. Relief that they were not able to wait until the end of summer for the procedure. Had we waited, our son might not have been alive by the end of the week. We thought his fatigue was due to him being a teenage boy and staying up late on his phone, doing homework or playing videogames. He had to have tubes put into his kidneys to help relieve them from working so hard and allow his bladder to recover/mend from the surgery. After a week in the hospital, we came home with five tubes sticking out of his little body that we had to flush and drain.
Today, after following a very strict renal diet, taking up to 30 pills a day and injections three times a week, I am happy to say that he is now at stage four kidney failure (if you can be happy about that) and is on the transplant list. It is amazing the things that we take for granted like having a glass of milk or a bacon cheeseburger and spaghetti. And then there are things that we celebrate when life hits you. Every time we go to a follow up appointment and we go from stage five to stage four kidney failure we celebrate. When we do lab work and they take 15-19 vials of blood from him and the numbers either stay the same or improve, we celebrate it as a win.
Our hope and prayers are to avoid dialysis and that Kylan receives a transplant soon. A live donor will give him more years to enjoy life and have a better outcome, but we will be grateful for any help.
Thank you and God Bless you
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.