Olivia's SJIA Diagnosis (Part 1)

I have been wanting to type this post for many months, but I've been scared. Olivia's diagnosis is still confusing at times to me. I understand everything, it's just putting it into words for others to read.

It all started around the end of October when she developed a rash. It started on her legs and then on her arms. Unsure of what could have caused it, we started thinking about the food we were consuming. Since she was still getting pumped breast milk, I had to think about what I was eating as well. We couldn't ever think of anything that was out of the ordinary that she hadn't had before. After a few days we noticed the rash would be a little worse in the evenings and at night. Dannie and I never thought it was anything serious because she seemed fine the whole time. After a week of having a rash, she began getting temperatures at night. I took her to the pediatrician on Oct. 31st. The pediatrician thought she had a viral infection. Since she had no other symptoms and her temperature was actually back down that day, he wasn't worried. They did pricked her foot to check her blood work though. Her white blood count was a little elevated, but he still wasn't concerned. He wanted to follow-up if her fevers came back.

We returned home and started watching her rash more closely. It began showing all over her body. Her fevers would come back in the evenings and I think the highest was around 102. She hasn't EVER taken oral meds well. Fighting her for tylenol was not easy. She would gag a lot and puke it all up. She had lots of cool baths that helped lower her temp, sometimes. By Tuesday, November 4th she still had a low grade fever. I decided to call the pediatrician back again and they wanted to see her again. Again, they pricked her foot for labs. Her white blood count was very high at that appointment which concerned him. My mom went with us for extra support. He was unsure what it was and referred us to see an infectious disease doctor in the area. We didn't have much luck getting in contact with one locally and the pediatrician didn't want us to continue waiting. He said the best thing would be to go to Shand's Children's Hospital and see what they recommend at that point. Very worried at this point what it was, we headed to Gainesville. I called Dannie at that point to fill him in and sent him home for my breast pump and milk.

We were in the Emergency Room for what seemed like FOREVER. Doctors and nurses would come in every so often and we would have to explain our story every time. They did LOTS of labs and gave Livi oral meds for her fever. (I have pictures of her rash from during this time, but I will have to upload those later) My parents were both there and Dannie as well. They finally decided they were going to admit her to the hospital. At this time, we still had no idea what we were dealing with, all we knew is that her blood levels were very high and that was worrisome.

From what I remember, they poked her a few more times during the night for more labs. Dannie and I were stressed and very on edge at this point because we had no idea what was going on with our baby girl. We didn't sleep well at all. Dannie and I had to get used to nurses coming in every once in awhile to check on her, get vitals, and also give her meds for her fever every 4-6 hours.

The next morning we were up bright and early for more labs. She may have even had an X-Ray and CT Scan. I can't remember when she had all those done because she had so many. Our days usually began around 6:30 AM because the doctors and students made rounds between 7:30-9:00 am. Again, during these times they just asked us lots of questions and we told Livi's story again and again.

 The next couple of days she had lots of tests done. We were still unsure of what was going on which made our situation even more difficult. We were in quarantine, so all medical personal and staff had to wear a mask and gown. This scared Olivia SO much every time someone would enter the room. Poor girl was tired of being touched.

The only thing we could do was try and make her the as comfortable as we could. Without a diagnosis or any end in sight of when we were being discharged, we got daily visitors from friends and family and just tried to enjoy our time with Olivia.

Dannie's work was amazing at letting him be gone during this hard time, can't thank them enough! Livi had daily visits from Granny and G-pa. They were with us every day. The Burgos family came by, the Ekker's, and the Braswell's. Not to mention all the love and support we got through phone calls, texts, and messages from Facebook and Instagram.

The doctors rounded every morning during the week and were still unsure of a diagnosis. They had said she was a mystery for now. That didn't give us much hope that we were getting out of there anytime soon. We still needed a diagnosis and a plan for her care.