On Tuesday October 23rd, 2018. I awoke to the familiar cries of my 19 month old toddler around 4:30 am. I sighed and heaved my 25 week pregnant body out of our king size bed and used the restroom before padding over to Janie’s room. I was shocked she had slept that long without waking up. She has never been a good sleeper. In fact, I have probably slept through the night once or twice since before the day she was born. Yes, we have sleep trained numerous times, she’s just a special one. Okay fine, maybe we have contributed to the problem just a little.
Upon entering her bedroom I picked her up, ready to complete our ritual of carting her off to bed with me for a few more hours of sleep. As I laid her on my shoulder I noticed how warm she was. Correction, how incredibly hot she felt. I grabbed the thermometer and sure enough she had a fever of 102.7. I got her some medicine to bring it down and some milk and we cuddled back to sleep. She had had a slight runny nose the day before and toddlers pick up viruses all the time, so I just figured it was something she picked up from the gym daycare or church nursery.
We went about our day, taking it easier than usual and eating lots of popsicles, which was fine with me. Grandma D (my MIL) came for a visit before she headed to the airport that evening. She played with Janie while I squeezed in a quick workout down in our basement.
After Grandma D left I went to change Janie and lifted her shirt to see a rash spreading across her body. Trevor had just stepped through the door and had a look at the rash with me. It was covering her private areas as well as spreading up her stomach and back. We immediately knew something wasn’t right and dropped our plans for the evening to take her to Instacare.
I had planned to bring a ton of Reading Noodle supplies to the Young Women of my church (The Church of Jesus Christ of Latter-day Saints) where they had offered to do a service project for me to help me get ahead in making orders. I had spent the day with Janie sick on the couch and had quickly thrown together the service project that day while she napped. Upon seeing her rash I realized the service project couldn’t happen with me there. I quickly called my friend who organized the project, ran to her house, dropped everything off, and gave a quick run down of what to do. She was amazing and the young women got me so far ahead without me needing to even be there. That was a huge blessing!
After that we were off to the Instacare right near our house. The wait was almost two hours for the kids care so we rushed off to another one several miles away where we heard the wait was shorter. We were taken to the room right away but ended up waiting for 45 minutes in the small cramped doctors office. When we were finally seen by a hurried doctor trying to see multiple sick kids it just felt rushed. She checked Janie’s throat and said it looked red and irritated but said she didn’t want to put us through a throat swab. She said it was most likely hand foot and mouth, or another virus and to keep an eye on her fever and meet with her pediatrician if needed.
We went home feeling like we should have advocated better for our child. I wanted her tested for strep, even though it is very rare in children her age. That was lesson number 1 for us. Always push for what you think needs to be tested, parent intuition is a real thing, and your voice matters.
On Wednesday her fever was up to 103.7. She was definitely not feeling well, and it felt like a race against the clock to keep up with alternating Tylenol and Ibuprofen for both medicines to only slightly lower her fever. Her rash was at its worst this day. It was spreading down her arms and legs, slightly touching her hands and feet. Janie HATES having anything on her hands, feet, and mouth and kept asking me to wipe her appendages off.
By all means it truly could have been hand foot and mouth just by the look of it. We kept her sandwiched in between us that night, her favorite place to be, and took turns feeling her torso and head for how hot she felt and did our best to keep up on her pain meds. She felt like fire at some points, even with medicine. It was terrifying. I even did the old “skin to skin” therapy at one point to try and help regulate her body temperature.
By Thursday morning, after sleeping together for a few hours I woke up realizing I had slept through a dose of her fever reducing meds. I took her temperature and it was 104.7. My heart dropped. I quickly got the medicine ready, woke her up, and gave her water and medicine (definitely should have given her food too, but her appetite was awful). She almost immediately threw up. At this point I was starting to panic. Trevor had recently left for work and I was alone. It was just Janie, myself, and my half grown baby kicking in ignorant bliss. I was left trying to decide what our next step was while frantically texting Trevor updates. Luckily, her pediatricians office opened about an hour later and I got in almost immediately to be seen.
Janie’s eyes were bloodshot at this point, but she was attempting to smile and I would give her little bits of food when her appetite would perk up. Her pediatrician is amazing and immediately identified that she had an ear infection in one ear and that her eyes were infected as part of the ear infection. She also gave me her cell phone number to call her if we were worried over the weekend. She said don’t go back to Instacare, just call her instead. I took the number with tears in my eyes, so thankful to have felt heard at this appointment.
Her Dr. was furious she wasn’t tested for strep during that first appointment and thought that Janie might have been fighting strep that turned into scarlet fever. She did not believe Janie had hand foot and mouth. She put Janie on antibiotics to take care of any leftover strep, the ear, and the eye infection.
We went to the pharmacy and I felt so at ease getting those antibiotics going. I thought for sure that would be the cure. That she would be up and going by the next day.
On Friday, day 4 of illness and fever, Janie woke up again with 104 fever after I missed another dose of fever reducing meds in the night. The Dr. had said she should be feeling better by the weekend, so I decided to give it another day for the antibiotics to work before I worried. Her rash was mostly gone, but my sweet baby girl was definitely not feeling good. She was lethargic and clingy and EXTREMELY IRRITABLE. Her appetite was next to nothing and she kept gagging as if something was in her mouth and bugging her. Needless to say we cuddled on the couch most of that day.
By Saturday, day 5 of fever, Janie’s fever was still reaching 103 whenever medicine would wear off. And her fever would never break, it would just lower and hover around 100 for a bit before quickly climbing back up. As the day went on I started to notice she was walking funny. She had a sort of limp to her step and whenever she would try and push herself up from a sitting or laying down position she would cry in pain and ask for help. It was heartbreaking to watch my very active toddler be in so much pain.
Saturday evening we finally decided to call her pediatrician. I remember leaving the office Thursday with her cell phone number thinking I would never need to use it. I never want to intrude on a professionals personal life, but we were desperate. It rang and rang and her mailbox was full so I sent a text. She called back quickly and based on Janie’s status said it was best to have her seen. We took her to the ER at our local hospital, where Janie was born, and where the ER Dr.’s are great but not particularly versed in pediatric medicine.
They were able to get her fever to break and help educate me on the correct dosage of pain medicine based on her current weight. They ran a UTI test as well as a viral nose swab. Both came back negative. The Dr.’s there still thought it could be a virus, just not one on the panel, and sent us home. Janie seemed happier with her fever gone, and her limp wasn’t as pronounced either.
We went to sleep praying and hoping for more improvement the next day.
On Sunday I started to notice that Janie’s hands and feet looked a little swollen. Trevor didn’t think they were so I tried to push that worry away while still keeping a close eye on her hands and feet. Her fever was still 103 whenever meds wore off and she was just miserable. I knew something was wrong, but I also felt like we had been through enough Dr’s visits for one week.
That night her pediatrician checked in via text asking how Janie was. I texted back an update explaining some new concerns and then didn’t hear back until early Monday morning.
The text said that if Janie wasn’t feeling well still that she would need to be seen again. However our pediatrician doesn’t work Monday’s, so she told us two of her colleagues in her practice to see instead.
I called and made the appointment since Janie still had a fever and this was day 7 of fever. We weren’t going to be seen until 2:30 pm so I watched her throughout the day. She actually seemed to be happier and more perky. She was still limping and her hands and feet still looked slightly swollen. Her eyes looked more clear though and overall she seemed happier. It was hard to know what to do. I found myself wondering if I should cancel her appointment, but thankfully my husband encouraged me to keep it and said he would meet me there. We both agreed it was better to be safe, and I am so thankful we did.
Janie was not happy to be at the Dr’s again, but the pediatrician we met with was truly wonderful, just as our pediatrician had said he would be. He listened to all of my concerns and all of her symptoms and then asked, “Are her hands and feet swollen at all?” And I remember feeling this freeing feeling, I wasn’t crazy. “Yes, I actually have been thinking they are” I said.
He looked them over and agreed. He then said the words that would change our world and also give us comfort in our decision to have her seen. “It looks like she may have Kawasaki disease.” He then proceeded to get us lined up for blood work in the lab downstairs, and called a cardiologist to discuss Janie’s case. Since she didn’t have all of the markers of Kawasaki’s it was hard to know if that was what she had. But he moved quickly and seemed eager to get answers just as we were.
We went downstairs, had the blood work done and three sticks later (insert face palm emoji) they had enough blood to run their tests.
We went home and honestly we were spent. Spent from Dr’s offices and now this new possible Kawasaki diagnosis. I remember feeling in denial. We watched Janie play and she looked so much better, not her normal self, but definitely better. I was dreading another ER visit, which the Dr we saw said might happen depending on her blood results. We waited about an hour and a half and Janie fell asleep on me amidst lots of basement construction noise, which is unusual for her.
My phone rang and I remember thinking, The results are going to be normal, and we had to go through all of this for what we’ve been told is a virus over and over again. My mind was also reeling over how much money this was all going to cost.
The Dr. quickly walked us through her labs and said that due to her blood work she had some indicators that were very high, and some that were too low. All of which pointed to possible Kawasaki’s (there is no actual test to know if you have it or not, just indicators and symptoms). “I’ve called Primary Children’s ER, they are expecting you, you need to go there as soon as you can.”
My heart sank. Trevor and I looked at each other, the fear that we had pushed away starting flowing through our bodies at an even faster rate.
We packed everything up quickly, not sure if we would be sent home that night or not, and got on the road. We said a family prayer prior to leaving our driveway with Janie happily smiling in the seat next to me. As we drove to the hospital I remember thinking this couldn’t be that serious, it just couldn’t. She looked so much better, it must be just precautionary.