I had the pleasure of meeting Kelsen a few weeks ago. Oh my goodness, talk about falling in love! He was the most welcoming, loving child I may have ever met. This little guy has been through so much. He is currently waiting for his third heart. His mom, Nikki, was gracious enough to share her story with me. The following is her story….
Josh and I were high school sweethearts, got married in 2011.
Kelsen was born a healthy boy on Dec 4, 2012. He was the first grandchild on both sides of the family.
Around 5.5 months Kelsen wasn’t wanting to eat much, wasn’t sleeping well and fussy. We thought he was teething. We went to our family cabin in the Uinta Mountains in June of 2013. Kelsen was happy and swinging on the tire swing as I pushed him up and down. Once the swing stopped, he projectile vomited until his lips turned purple. We rushed him inside, not knowing what was wrong. This couldn’t just be motion sickness. My baby was extremely lethargic and not staying awake. We had no cell service, so we hopped in the car and drove to the nearest ER in Evanston, Wyoming. Josh was in the back with him making sure he was breathing and was awake. Of course, once we got there Kelsen was fine, happy… and thankfully had his color back. They thought he had just been nauseous from swinging so they gave him Zofran. He fell asleep, but was extremely pale and needed oxygen.
They admitted us for the night. Kelsen woke up every hour puking and crying. We had no idea what was going on and neither did the doctors. They had us transfer to Primary Children’s Hospital by ambulance. Once we got there it was test after test, questions upon questions. After doing an echocardiogram they sent him straight to the ICU. Immediately after we got there and hooked up to monitors Kelsen went into cardiac arrest. He had no pulse, he received CPR for almost an hour before he was placed on ECMO (life support). We had no idea what was going on. Brand new parents, brand new baby. How was his heart failing? They discovered he had Idiopathic Dilated Cardiomyopathy and his heart was three times the size it should have been and could no longer pump on it’s own. His only option was a Berlin Heart, an external heart that pumped the blood for him. He wouldn’t be alive today if this wasn’t available. He had many complications after the VAD was placed from arrhythmia and blood clotting issues.
Four months later the call came in, and on October 6th, 2013 Kelsen received his miracle heart. He had his surgery and were able to go home one month later after.
Kelsen had a gtube placed December 2013. He developed severe oral aversion from being intubated so many times. And still doesn’t eat much to this day.
Kelsen had fevers and was extremely sick. He was admitted and tests began, his red blood cell count was dangerously low. He had medication induced hemolytic anemia and his body was breaking down it’s own red blood cells. He had to receive blood transfusion after blood transfusion. He had an extremely bad reaction to his first transfusion that caused him to have a seizure and kidney damage. We thought we were going to lose him multiple times. He received IVIG infusions a chemotherapy drug called, Rituximab. They switched up his immunosuppressant medications. It took three months for him to start feeling better, but he eventually did.
Kelsen, at almost 3 years old, started walking!!! And we found out he is going to be a big brother!
March 1, 2016
Kelsen was throwing up every day and sleeping a lot. We took him to the ER and he was admitted to the CICU. The next morning he had a biopsy that showed he was in severe cellular rejection. He was put on high dose steroids and a few other medications and had a biopsy about 2 weeks later March 12th that showed he had developed Coronary Artery Disease and had antibody mediated rejection. They did a cocktail of medications to help his rejection and artery damage. Exactly two months later on May 12th we learned that the medications helped the rejection but not his Coronary Artery Disease. He needed a second heart transplant. Once again, we were given the devastating news that it was necessary for him to wait in the hospital until his second heart was available.
May 23, 2016
Kelsen’s baby sister, Berkley, was born! Both of us were in the hospital, different hospitals. I had to leave my boy to have my girl. I refused to stay longer than I had to. I needed to get back to him. Two days later Kelsen got to meet his little sister. We drove straight from Lakeview Hospital up to Primary’s to see him.
3 months later…
August 11, 2016
We received the call that Kelsen’s second donor heart was available. The heart was a success and one month later our family of four got to go home for the first time!
It was so incredible to see Kelsen going to preschool, the zoo, sledding for the first time, swimming, camping, trick-or-treating, the list goes on. We tried so hard to do normal things and get him out to have experiences as much as we could.
August 7th, 2018
Kelsen had an annual heart catheter/biopsy. Everything looked great except for extremely high pressures in his heart and labs showed he had developed two new antibodies. He was treated with a high does of steroids and six months of IVIG infusions. Two months later he had a follow up biopsy that showed mild rejection and a change in his heart function. We were admitted and started plasmapheresis and more steroids. We were there for about two weeks and then got to go home., Just in time for Halloween. Kelsen was Batman and Berkley was Owlette! Kelsen loved handing out candy and for the very first time, said, “Trick-or-treat!”
November Kelsen was well enough to go on his Make-A-Wish trip that had been rescheduled twice before due to sickness. His wish was to meet Mickey Mouse in Hawaii! He loves playing in water and being outside. He had so much fun that week!
We were told that we had to give his concoction of medication changes and treatments time to work, but unfortunately he developed Coronary Artery Disease for the second time. The devastating news came, “Kelsen needs a third heart transplant.” We knew there was a chance of him not being able to be re-listed for a third. We had many meetings with Dr. Molina from the transplant team, we reached out to six different heart centers across America. Looking for someone to take his case, give second opinions, to help figure out the best way to treat this boy and make this heart last as long as possible.
We fought hard for him, and after countless meetings, debates and tears, he is currently listed in the heart transplant list with a predicted wait time of 1 to 2 years. At this point we don’t know if he will even live long enough to wait that long. But we are taking it one day at a time and we are not giving up on this little boy, enjoying every precious moment we are given.
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