Kylie and I have spent 4 days out of the last 7 in the hospital. We have seen 12 doctors, had 3 biopsies, and received 7 different prescriptions. Thankfully, we are fine now but that things have settled down, I can finally reflect upon the experience.
While this may not have been a technical emergency, we took Kylie to the ER because she was in so much pain, she could hardly move. A blister-like rash was spreading over her body and nothing we were doing seemed to help.
The doctor on call diagnosed her with hives, gave her two injections and sent us home. Going into the ER, Kylie was her bubbly happy self, however when we left, she was completely miserable. Something was not right. On the bright side, I now had a referral to see an allergist. The next morning, she had gotten worse. The allergist was certain it was not hives nor an allergic reaction. She insisted we see a dermatologist immediately and scheduled an appointment for us later that morning. I was stunned. Same day appointments/deliveries/installations in Texas are practically unheard of.
The dermatologist examined my daughter. After a brief discussion with her colleague, she broke the news: Kylie had staph scalded skin. Unfortunately, we would be going back to the hospital for an overnighter. All I could think of was another $200 for another misdiagnosis and hours spent in the waiting room. She disappeared to make accommodations for us. We would need a hospital with a dermatologist and a free bed so that meant Dallas. She apologized for the inconvenience of a 45 minute trip but said we would be admitted as soon as we got there. I could take Kylie to get some lunch and back home to gather her things but the sooner we got there, the better.
When I broke the news to Will, he was shattered. Staph was scary and he wouldn’t be coming with us. I couldn’t risk exposing Logan to whatever goodies the hospital had in store for us. We packed 2 books, both of our pillows, a coloring book and crayons and her favorite stuffed animals. I also packed drink mixes, water bottles and a tube of Girl Scout cookies. They had said we wouldn’t have to wait but I wasn’t taking any chances. It was a good thing too. Our first meal didn’t come until 7:45 that night because the kitchen had no record of Kylie’s diet.
I was also glad I had packed our pillows and her stuffed animals. The hospital was no longer a place where people examined her in disposable garb and rubber gloves; it was a place she could really get better. She was at home as soon as Spongebob came on. For 3 days, I ordered all of Ky’s favorite meals. We read books at bed time, just like we did at home. We colored and blew bubbles and watched her favorite shows. Whenever she was lonely or scared, we facetimed. I rarely use facetime in my everyday life but the fact that she could see her grandparents, her dad and Logan while being denied visitors was amazing. It also made things much easier for my son and husband who had rarely gone a day without us.
The second morning, I was approached by a team of doctors and a text book. They showed me a picture of staph scalded skin and then a picture of eczema herpeticum. I had to agree it did look more like the herpeticum. Looking back, I wish I hadn’t shared that update with Will or the grandparents. I did say we were still waiting on the biopsy results but herpes is a life long illness despite not being the sexually transmitted variety. We found out the next morning that it was not eczema herpeticum and that the initial diagnosis was correct.
I couldn’t help thinking how different things were. 23 years ago, I was 4 years old and in the hospital for a tonsillectomy. In the late 80’s it was a 5 day stay. My mom was with me the whole time. I had to share a room with another girl and our spaces were divided by a curtain. Thankfully, I had the television. We called my dad once maybe twice the whole time I was there. It was expensive too. I remember the chicken noodle soup came with a thick skin over it as did the cherry jello.
During her hospitalization, Kylie called Will at least 4 times a day. The food we were served was actually pretty good and fresh too. The food service menu was 3 pages long and breakfast could be ordered any time of day. This was much so much better than the soggy sandwiches I had anticipated. I was also taken by how attune to Kylie’s needs these nurses were. A Child Life Specialist was made available to talk to Kylie about her illness in a way she could understand. During my hospitalization, I had no clue of what they were going to do or why. That really made a difference to us.
This hospital and nearly all of the specialists leading up to the hospitalization had taken what I knew to be a nightmare and turned it into everything a medical experience should be. If I had to do it over, I would have grabbed a full toiletry kit. I would have packed 3 days worth of clothes for both of us and slippers but that was it.
Today we are back at home. Kylie is still healing but doing much better. I am completely grateful that she is left with a trust for her care team and no more bad dreams. Who could ask for more?