Isaac's Story
Our happy and healthy 7 year old son fell sick the night before his first day of 2nd grade back in 2016.
Isaac was diagnosed with Strep Throat and was given antibiotics on that first day of symptoms. He spent the next two nights with high fevers and on day 3, his lips were cracked, his neck was swollen, he had a rash on his back and could not walk. I rushed him to our pediatrician's office and he decided to admit Isaac to PICU because he felt he was suffering from appendicitis. After countless tests, exams, procedures, specialists and medications, Isaac continued to worsen. His lungs filled with fluid and was placed on a respirator. Two days later, Isaac suffered 2 cardiac arrests. He was revived after 90 minutes of CPR and was airlifted to The Children's Hospital in San Antonio, Texas to be placed on ECMO. After 4 days of ECMO, Isaac began to show improvement and was removed from ECMO. Two days later he was off of the respirator and breathing on his own. We did not know that Kawasaki Disease was the cause of all of my child's problems. We had never heard of KD prior to that morning when the team of doctors at the hospital came to talk to us about Isaac having aneurysms. My husband and I were in shock as we learned that our once healthy little boy was dealing with 7 "jumbo" and "adult size" aneurysms in his coronary arteries. Our world was turned upside down! We had no idea what he was dealing with and did not know what to expect. It was at that very moment that we knew our son had been misdiagnosed and that this disease ran wild in his body without anyone knowing. We are now four years post KD and it still amazes me that most people have never heard of Kawasaki. I wish I had known 4 years ago what Kawasaki was and I wish my son's doctors would have known, too. My husband and I witnessed our son's heart stop twice. The second time was the worst. Our son was gone for 90 minutes and it was the most unbearable moment of our lives. I wish that on no one. Kawasaki almost altered my family forever.
Our KD kid is now thriving. Although, he takes an aspirin daily, for life, and has issues with joint pain and migraines, he has never once complained throughout this terrible unforgettable ordeal. I believe it was his strength and courage that pushed us through. We are so blessed that our family is complete. We learned many lessons from our situation with KD and now do our best to inform others of this dreadful illness. We have become advocates for KD Kids and try to educate through our social media platforms. Isaac, uses his experience to help others, also. Once he was released from the hospital, he decided he wanted to return to take toys to the other kids that remained hospitalized. He started Isaac's Angels Toy Drive and have, for the past 5 years, successfully provided thousands of toys to kids at our local children's hospital. We are so proud of him! He is truly a little WARRIOR with a HUGE heart!
Misdiagnosis?
Appendicitis- antibiotics
HLH- steroids
Current Conditions
Mild dilation of coronary arteries
eczema
random migraines