Our Story

A Parent’s Ordeal with Kawasaki Disease by Steffanie Sampson

Luke BuseyIt seemed like an ordinary day at the Busey household. Gary’s episode of the Ellen Show was airing that day showcasing his work on Donald Trump’s Celebrity Apprentice television show. After the show, I took Luke for a walk but he was acting very strange and didn’t want to play, which was extremely unusual for him. Luke lives for the outdoors.

I also noticed that he didn’t want to eat much, but that was not too abnormal for him. The big shocker came at 10:30 pm when he woke up sobbing and panting; Luke is such a good baby and has been sleeping through the night since he was three months old but on those rare nights when he does wake up, I would give him a bottle of milk and he would fall right back to sleep. But not this night. This night was completely different; he was panting like he had been kicked in the stomach, so I picked him up and immediately noticed that he was burning up with fever, and his heart was racing. Just as I tore of his pajamas he began vomiting uncontrollably.

Gary looked at me and said “Call 911, we don’t want to lose him”. Lose him?? I thought to myself,…this is really bad. Gary knew immediately that something was terribly wrong. Thankfully, the paramedics arrived within minutes and we were off to UCLA Santa Monica, where Luke was diagnosed and treated for Croup. After his treatment, Luke seemed better and he was discharged that same night.

The very next day, although not fully his old self, Luke continued to act better and even played a bit in the morning. But, in the afternoon, he started panting again and the fever returned along with the rapid heartbeat. I called 911 and very soon we were back in the ambulance on our way to the hospital, again. This time, we took Luke to Cedars Sinai, where his pediatrician worked.

During the ambulance trip, he seemed to respond to the oxygen treatment, and because of that, I felt certain that he would be treated for some common childhood illness and we would be able to return home that day. Little did I know that instead, we would be spending the next two weeks in the hospital, where the doctors would be involved in a desperate search trying to figure out what this mysterious illness could be.

The next two weeks turned into a blur of nurses, doctors, intravenous tubes, injections, technicians, testing, and hospital food. I was with Luke for every minute of it, sleeping in a little cot next to him. As the doctors continued their attempt to diagnose Luke, he developed additional symptoms, a rash over his entire body, conjunctivitis, and the fever persisted. Finally, after everything was ruled out, Luke was diagnosed with KD and treated with IVIG. After his treatment, he seemed to be getting better and was even released from the hospital although his fever did not return to normal, it became low grade which concerned me very much. The next day after he was released I was not satisfied with the fact that he still had low grade fever which seemed to be getting higher as the day progressed so I brought him back to the hospital. Luke was in the very low percentile of children who need more than one IVIG treatments.

Our family is blessed to say that in the end, everything turned out well, and we have our beloved little boy home and healthy.

Now every time Luke gets sick with an ordinary fever, or we go for a follow up appointment regarding the KD, we are reminded of our experience, and how little is known about KD and especially we are reminded of the many unsuspecting parents like us who have no idea that KD exists.

Because we were so blindsided by this disease, as others have been, it is our mission to raise the awareness of KD and create a laboratory test that will diagnose KD so that all children can receive treatment in time to avoid life debilitating or terminal consequences.. We will do whatever we can to shed as much light as possible on KD, in an effort to provide as much funding as we possibly can to assist in the research needed to stamp out this disease. Please help us in our effort, and thank you.

 

 

twitter Busey Foundation facebook