Landon

2021 EMBRACING BRAVE North Texas Recipient

In March 2021, our 5 month old son, Landon developed an ongoing fever that lasted 2 week’s without diagnosis. After taking Landon to the ER at Cook Children’s Medical Center, specialists diagnosed Landon with a rare disease for his demographic called Asymptomatic Kawasaki Disease. We also discovered that his heart was severely damaged by the disease. His coronary arteries were enlarged to 3X the normal size along with dangerous inflammation surrounding his heart. They immediately started treating Landon and continued to receive testing throughout our stay in the PICU and cardiac step down unit. Doctors thought we had the disease under control and we were sent home after 9 days in the hospital learning to give him 2 injections a day in addition to other oral medications.

In April 2021 one of his routine labs measuring heart failure spiked again and we were admitted back to the Cardiac Stepdown Unit at Cooks. During this stay in the hospital we were informed that we were one step closer to needing a heart transplant. They also realized that he is Kawasaki resistant in that his body does not respond to the medications that traditionally treat Kawasaki. After 8 days in the hospital and a battle with insurance we were sent home again. His doctors added new oral medications and another shot for Landon to our daily regimen.

We continued the same regimen for about a month. Unfortunately, his troponin level spiked again and this time his routine echocardiogram showed signs of a cardiac event (heart attack). They put Landon under anesthesia for a cardiac catheter procedure to evaluate the damage on his heart. It was worse than expected with signs of significant heart failure and we were immediately admitted to the CICU. They started a new IV medication to help break up blood clots. Doctors did not think it would work, but after another catheter procedure a few days later, it showed to help open the blood flow to his heart. They were pleased to see that there was improvement and continued him on this new medicine. We were discharged to go home with 3 injections a day and 8 oral medications to help maintain heart function and quality of life for as long as possible. The ultimate next step will be to get a heart transplant. We are now working with two hospitals- Dallas Children’s Hospital in Dallas (the heart transplant team) and Cook Children’s in Fort Worth. 

We are grateful for the team of doctors, nurses and hospital staff that are doing everything to help our son! Things can change drastically every day and but we continue to pray that he remains stable and that we will never get to the point where we need a heart transplant. Factors will change as he grows that can help or hinder the healing process. As you can imagine, it has been a life changing experience and emotional rollercoaster. Through this process, my husband and I have had times where we have had to be out of work but as most people understand, you will do whatever you have to do to take care of your kids. Kent runs our small business (food truck) and I am a high school dance teacher/coach. Landon’s grandparents have been amazing to watch our daughter during this time and help her cope with mommy and daddy’s absence. We know that the Lord has prepared us and understand that there is a long journey ahead but we are thankful for the prayers, support and encouragement from our families and friends. Our son Landon is currently 10 months old battling chronic heart failure, incomplete Kawasaki Disease, and Coronary artery stenosis.

On the outside, you would never know he is going through challenges because he is full of pure JOY. He loves watching his big sister Henley who is 2.5 years old and playing with his corgi pup. -2021