Thursday, January 24th, 2013
It all started with my Wellington, my middle child, having a simple fever, a rash, and the thing we all so often hear from our pediatricians: “How long has your child had a fever? If it’s been for five days or more, we will run some more tests.”
I have to admit I had no idea why this magic number of five days was so important, having never had any of my children ever run a fever for that long. The concern would come and go as quickly as the fever passed.
Well, not this time. Multiple doctor visits, two trips to the ER (one of which we left with a misdiagnosis of an allergic reaction to penicillin), an ambulance to a pediatric hospital, a lot of tests, some miracle medicine, an ecocardiogram, and several infectious-disease doctors and cardiologists later, it seems as though everything is going to be okay.
My son was diagnosed with Kawasaki disease. It’s a disease of unknown cause that attacks the blood vessels and ultimately the heart if it is not treated within a critical window of time. My husband and I held our son in my arms while he received the medicine he needed, and we watched our little boy go from so sick and in pain to our smiley, cuddly laughing little boy once again. We will forever be thankful for the scientists who had done the work to learn how to cure this rare disease.
We are still recovering from the experience, and have a future of follow-ups ahead of us. But in looking at our experience, at what went right and what went wrong, I learned something so important: You know your child best. You must advocate for him (or her) if you believe him to be sick, and you must not give up until you get to the right doctor, to the proper care, and have the answers to your questions.
Wellington is going to be okay because of our perseverance and because of the access we had to the right doctors. Only in my nightmares do I think what could have happened if we hadn’t persisted and hadn’t listened to our gut that this was more than a common virus, this was not an allergic reaction, that something was very, very wrong.
Wells is back to his old ways, he’s eating like a champ, flirting with the ladies, and has a quest for adventure and learning that only a toddler could. I am thankful every day, and I know now to always listen to my gut.