Kawasaki Disease

Two weeks ago, we spent 6 days in the hospital. Ethan started off with high fevers on November 8th. The next day his fever was 102. I took him to the pediatrician the next day. He prescribed antibiotics and tylenol for the fever. Later that evening he broke out into a rash and still had a fever of 102. We decided to give him a suppository that night to see if the fever would go down by the next morning. At 7:30am on November 10th, not only did the fever not go down, but he broke out in a rash all over his body.

We took Ethan to the ER at Children's Hospital at Montefiore (CHAM) one of the best in the country. The nurse took his temperature in triage and it had gone from 102 to 104. We were isolated because they didn't know if the rash was contagious. After a couple of hours, they decided to keep him overnight to monitor the fever as it had spiked now to 105.1. Initially the doctors thought that he might have had a allergic reaction to the antibiotics. By Monday, November 12th, Ethan was exhibiting swelling in his hands and feet, coughing, runny nose, red cracked lips, strawberry tongue, continued high fever (5 days to be exact) which were all classic text book symptoms for Kawasaki Disease.

What exactly is Kawasaki Disease? Well it sure as hell isn't a motorcycle! Turns out Kawasaki disease is a rare condition in children that involves inflammation of the blood vessels. Kawasaki disease can cause inflammation of blood vessels in the arteries, especially the coronary arteries. This inflammation can lead to aneurysms. An aneurysm can lead to a heart attack, even in young children, although this is rare. It's not contagious however, the cause is unknown. Needless to say, I was dumbfounded by this information.

So in a nutshell what does this mean for my baby? He received a dose of IVIG (intravenous immunoglobulin an ingredient of blood that helps the body fight infection) along with a high dose of aspirin to reduce the risk of heart problems. An echocardiogram was done and showed that his left coronary artery was slightly dilated. 

Ethan was discharged on November 16th. He is feeling better but still has a bit of a cough.  He was given a flu shot before he left the hospital.  Today we went back to the ER because he had a fever again yesterday and today.   Thankfully, they found that it was a virus and he should be better soon.  

The doctors and nurses kept telling me that i'm a strong mother.  Very rarely did they see me upset, angry. They saw me mostly tired, exhausted, drained.  I think that after years of doctor visits for Niko's Spina Bifida and Hydrocephalus, my skin has toughened up.  

What they did not see was a weeping mom with insomnia bawling and praying in the wee hours of the morning on the couch.  Praying for her little boy, asking why this has happened to him, why should another one of my children suffer from any illness/condition, praying for additional strength, courage and wisdom. 

On  the 5th day of high fever, when he was diagnosed with Kawasaki (the doctor had her suspicions, but needed to confirm with Infectious Disease docs), i already knew he was going to receive the IVIG. but just as luck would have it, my baby was so swollen in his hands and feet that it became almost impossible to begin treatment for 24 hours.  At this point, i had a chronic headache from stress as I saw my poor baby being pricked over and over again hands, feet, arms and neck - to no avail.  We finally had a diagnosis and a treatment and yet my baby endured another 24 hours without treatment. I would have given anything to trade places with him as I looked down at my own arms and saw all of my veins exposed (a vampire's dream lol) and there was nothing that I could do - but pray and wait.  

24 hours later, after nurses, anesthesiologists and finally the chief of ICU was able to get an IV in.  At that point I was able to breathe knowing that my baby was receiving treatment. Although we were not in the clear. Treatment began around 10pm for about eight hours.  By 6:30am the treatment was complete.  

Fast forward, it's been a week since he's got discharged and he's still with minor fevers, aches and pains.  Not sure how long this process is going to take, but it's taking a toll on us. Sleepless nights as he cries in discomfort, sweating out the fevers that roll through the night. But over the past couple of days, he's had some appetite and a little more himself. He looks a lot better, but he's not 100%.  I look forward to the day, he's back to his little spitfire self.  My endlessly curious, silly, funny, happy baby Flash.  

Until then, I continue to pray for his recovery, continue to do research and try to get myself back. One day at a time.