Jayce’s Story

This is Kawasaki disease in Canada.

07/01/2019

Jayce Kawasaki disease

My name is Stephanie. I am the mother of Jayce who is currently 21 months (was 19 months when he had Kawasaki disease) and this story is about him.

On November 9th, 2018, we had a normal day. My son was the happy, energetic toddler he usually was. We went to an indoor play-place and played for hours! Upon leaving on the car ride home, he spiked a fever and started vomiting. He had a temp of 101F for four days.

On Tuesday November 13th, my son and I were out for a walk. We just so happened to be walking passed our town’s hospital (Dunnville War Memorial Hospital) when I looked down at my son in his stroller, eyes rolled back and he was blue and shaking. I ripped him out of his stroller and placed him on the ground on his side. An angel was watching us; a nurse came running from her vehicle (she was on her way home, and had just finished her shift) when she ran over to ask if Jayce was okay! When she saw he was having a seizure she grabbed Jayce and ran him into the hospital, as I was in a huge panic. They immediately hooked him up to oxygen. He wasn’t coming back around. He was too lethargic. He was beyond dehydrated. This all happened so quickly. He needed immediate IV sugars. He was transferred to the closest children’s hospital to us (Hamilton, Ontario – McMaster Children’s Hospital) where it took my son three days to be able to pee on his own (without needing IV fluids). He was BEYOND lethargic. He couldn’t hold his own head up, let alone take a step. They took test after test to find what the cause of his fever was!! They checked his pee through a bag and a catheter (labs and cultures), his blood (labs and cultures), nose swab (twice), throat swab (twice), a rectal swab, and a chest x-ray. I was begging them by day 7 to do a spinal on my son because they COULD NOT find anything. They didn’t agree to it.

Day 8, I woke up at 4:30am, to a rash developing all over my son. I ran and grabbed a nurse as quick as I could, who told me “I, myself do not see the rash..this does not mean it is not there but I just can’t see it”. I gave it a few hours for the doctors to do their rounds to show them. I knew they’d see it!!!! But, they didn’t. They basically said the same, except added in “you’ve been here a long time, worrying, sometimes our eyes play tricks on us.” NO ONE saw my son’s rash. Finally by 5pm when they said they would give him an echocardiogram, the cardiologist came into our room and before he started the test he asked, “does he always have this rash?” And I have never felt more sane and relieved to hear someone else see it as well! Over the next 6 hours every single symptom came out, the strawberry tongue, swollen lymph nodes, red eyes, lethargy, high fever, swollen hands and feet and the rash got worse and worse. They finally believed me; they finally knew it was Kawasaki disease on day 8! At 11:30pm they began his first round of IVIG treatment. After the 10 hours Jayce woke up happy, smiling and wanting to walk around. They allowed him to go for a walk after a few hours of monitoring him, and as soon as he was up and walking around he began getting very dizzy, vomiting and had his fever spiking again. By 9pm on day 9 they started his second treatment of IVIG. By day 11, Jayce went 24 hours fever free and was able to be discharged. He was running around, eating AND drinking!! He had colour back in his face!!!

Jayce goes for his 6-week follow up echo on January 15th 2019! Jayce had one echo two weeks after discharge to make sure his arteries were okay. They gave us the okay and booked one more echo to be 100% positive. Kawasaki disease was one of the scariest illnesses my child has gone through. I have never seen someone get so sick, so quickly and doctors not be able to find the cause.

Jayce’s heart may be doing well but this disease has affected my son in many other ways. Jayce has woken up, every single night since being home crying about his legs hurting.  As well as his emotions and behaviour have done a complete 360. Friday November 9th was the FIRST time EVER that my son did not have a genuine smile across his face, the entire day. As soon as we got home on November 20th my always happy, energetic son was gone. I have yet to see a pure genuine smile across my son’s face since. It does not matter what I do, after leaving the hospital looking at my son, sets him off. Telling my son I love him, puts him into the biggest freak out. My son was THE happiest child. Everywhere we went, at least 5 people would approach us to compliment Jayce’s smile. I haven’t seen it nearly as much since. You may be thinking, this has nothing to do with Kawasaki disease, but unfortunately after speaking to MANY parents who’s children of all different ages, who have also been affected by this disease have experienced a similar aftermath. The irritability and emotional instability is intense for us parents, as I’m sure it’s just as hard on our children and should be talked about as well. I think both the disease and the aftermath should be discussed for those of us parents who lost a little bit of our children during the process of Kawasaki disease. While doctors are telling us our children are 100%, we see something different.

I will continue to spread awareness for this disease, for as long as I can to help other parents! Jayce was lucky and made it through this disease with out any major complications but not everyone does!!!

 

**Opinions expressed are those of the parent who has submitted this story.**