Siena's Story
Roughly one week after starting Kindergarten in August 2020, Siena came home from school with a high fever on Monday evening. By Wednesday she still had a high fever and I called her doctor. With the COVID pandemic upon us we agreed to have a PCR COVID test and the first available appointment was Friday AM with results only coming 4-5 days afterwards. Siena developed diarrhea and vomiting on Thursday pm and a rash that seemed to continually get worse. She was out of sorts and had not eaten since Monday morning.
She started to get so uncomfortable that sleeping at night was very difficult. I was unable to get her to take fever reducing medicine because it caused her to throw up. I took her to the ER on Saturday late evening out of desperation as I could not help my child feel better or reduce her fever. They did a rapid COVID test that was negative and sent us home. Her fever would do something very odd that I won’t forget. For a few hours in the morning it almost was as if it went away, but by afternoon it was raging again. We went to see my pediatrician on Monday morning and Siena did NOT have a fever. However, she said to call her if her fever came back. It came back and that was Day 8 of a fever. We planned for blood work Tuesday morning as she suspected KD and that is when everything was put into high gear.
Tuesday morning her PCR COVID test came back positive, which surprised everyone. Then, I received a call from the doctors office that we needed to get to Children’s Hospital in Denver as soon as possible (5 hour drive away) as they are thinking Siena may have Kawasaki Disease. They were expecting us and because she was assumed COVID positive we were whisked away into a tiny room in the ER we were unable to leave. We arrived at the ER at 5pm on Tuesday evening (Day 9) and they spent the next 12 hours running tests. At 5AM Wednesday morning they admitted her to the PICU. She tested Negative at Children’s for COVID and they were never able to find any antibodies then or now in her blood (we assume she had a false positive). Her left coronary artery was dilated and her oxygen levels were very low. She was diagnosed with Kawasaki Disease, and given the standard protocol of IVIG and another heart medication. She responded well and in a few days we were moved out of the ICU to the floor. The doctors were satisfied with her ECHO and on Friday afternoon we were discharged. That entire time I was not able to leave her room because of her false positive COVID test (they treated it as a positive out of abundance of caution). We were both so glad to see the sunshine and fresh air and I was so thankful to the Lord that I was walking out of the hospital with a healthy child. What a gift of his grace.
First, I want to say how thankful I am for my local pediatrician. She NEVER blew me off and worked very closely with the infectious disease department at Children’s. She quickly prepared a packet of all of Siena’s records as well as directions on where to go when we arrived at Children’s and what to say. I drove to our local clinic and she personally met me outside and handed it to me and checked on Siena again through the car window. This was a gift from the Lord because my brain wasn’t able to process everything that was happening. Second, I was so relieved once we arrived at Children’s. We were treated by the top Kawasaki specialists in North America and cared for so so well. I cannot say enough about Children's in Denver. I see how the Lord was with us the entire way, even in the little details. (They had just installed a new coffee machine on our ICU floor - that was a gift from Jesus).
We’ve been back twice to Children’s for checkup’s and she is progressing to the point that they will wait one year until they see us again. Praise God! Of course I will never look at a fever the same again, but that is too be expected after an experience like this. Siena is very fearful of doctors and the experience certainly will take some time to process.
Misdiagnosis?
Virus
COVID
Current Conditions
Siena still battles with canker sores in her mouth (I'm not sure if this is related) and complains often that her tummy hurts. I'm wondering if any of this is related or if she has underlying immune issues. As I am writing this it has only been 5 months since her diagnosis so these could be left over effects of the disease. If anyone else has experienced these symptoms, do reach out.