Kolton was diagnosed with multiple heart defects in utero. We knew he would need surgery after birth, but we didn’t know he would be taken immediately to the NICU and require emergency surgery. He had his first surgery the morning after he was born. At 1 week old he had his 2nd open heart surgery, at 6 months he had his 3rd, and at 7 years old he had his 4th and what we thought was his final. Besides his heart defects and “zipper” scar he appeared to be a normal little boy! He stayed heathy despite also being born with no spleen and requiring antibiotics indefinitely.

On August 24th, 2019, Kolton began complaining of chest pain. His vital signs were normal, besides a slight fever. We brought him to the ER expecting him to have some minor respiratory infection. The nurses and doctors began surrounding him and brought in a crash cart and then placed a board under him. I began to panic, knowing this meant something serious was going on. They told us they believed he was in SVT, but when the medication did not convert the rhythm, they realized it was not SVT but was Ventricular tachycardia and he needed to be shocked out of this rhythm. Soon after the shock he returned to the Vtach. They rushed him up to the cardiovascular ICU and started him on a medication via IV. The next morning his blood pressure began dropping and the doctor announced they were officially coding him. At one point another doctor came from the hallway and voiced his concern that if his blood pressure did not come up very quickly, he was going to die. The doctor pulled us to the side and explained Kolton desperately needed to be intubated and put on ECMO but also warned of the risk of stroke or never being able to be taken off of ECMO. The “rhythm team” came in and said they believed he had a blood clot causing a heart attack. He was taken to the cath lab and they discovered a large clot in his LAD. Every doctor that came by, for the whole month we were there, made it very known that Kolton was extremely lucky to be alive.

Since Kolton’s heart attack, we were told his heart muscle was severely damaged and function was severely depressed. They let us know that Kolton was in heart failure but that some of the function could possibly recover throughout the next year. We saw the cardiologist very often, along with other specialties as well. Kolton’s appetite and energy levels were slowly declining and by October 1st, 2020, he had absolutely no appetite and completely stopped eating and was vomiting if he tried to eat. They told us it was time to move to the next step and that would be transplant.

After Kolton was added to the transplant list, we were looking forward to going home until we got the call for a new heart. When one of the doctors fully explained that going home would mean Kolton would move down on the transplant list, we knew that would not be a decision we could make. We knew he had to stay in the hospital. Kolton has gone from the lowest dose of Milrinone to one of the highest doses, so we now know staying in the hospital was the best decision we could make for him. He misses his two little sisters and the rest of our family, since none of them can come visit because of COVID. Dad mostly stays at the hospital during the week and he goes to work during the day, I go home and care for our daughters and dogs and go to work also. We switch at least every other weekend, sometimes every weekend. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses, such as lodging and travel to and from the transplant center.

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.