I have promised myself this is the year I will be thankful. Thankful for the little things. Thankful for the people in my life who have made a difference. Our daughter, the youngest of four, has eosinophilic esophagitis (EoE). Just because we have a diagnosis, that doesn’t mean we know everything about her disease or what her days will look like. I think often people assume that once someone has a diagnosis they have a manual of what to expect. Nobody does, not even the doctors, but over time you learn things about your child that no medical book can tell you. The unexpected happens and a disease can present many a curve ball. However, with six and a half years of experience, we have learned a lot about our daughter and her disease. We learn every day!
We took our family to Snowbird Ski Resort in Utah last February. The beginning of our trip was great and completely uneventful. Everyone enjoyed their first day of ski school. The night was quiet and everyone happily returned to ski school for their second day. At the end of the day, the ski instructor let us know our daughter didn’t seem to have as much energy and spent most of the day inside coloring or resting. Skiing and being at a higher altitude can be tiring, so we were not worried at all and took her back to our hotel to rest more. Not too long after she began vomiting. This happens with EoE, so we were still not overly concerned and tried to keep her hydrated. It was probably from something she ate. At that time we were still trying to figure out her triggers.
By morning the vomiting had become almost constant, so we took her to the clinic at Snowbird Center. Though no one was familiar with EoE, they took the time to listen to me and learn about the disease. They understood that as her mother I knew her best, and I knew she was going to become dehydrated and unlike a child without EoE, it would take longer and be harder for her to keep fluids down that were taken orally. It’s difficult to remember all the details of the conversations and events that happened but in the end, if it wasn’t for the clinic nurses and doctors’ willingness to listen to me and learn about EoE, I’m not sure what would have happened!
Initially we had planned on leaving the day after she became ill, but weather problems cancelled our flight and we could not get on another flight for four days! Flying standby was not an option as she was so weak we needed to help her recover before we attempted the long journey home. We were stuck.
Without hesitation the clinic doctor said they would help her, as long as it took. Each morning we would walk into the clinic and they would bring us to a clinic room, cover her with warm blankets, turn the lights down and give her IV fluids, and repeat the same thing every afternoon. Several times we tried oral liquids, and they just came right back up even anti-nausea medication. This continued for four days. Everyone in the clinic got to know us and helped us in more ways than I can even say!
I have thought of the kindness of the nurses and doctors at the Snowbird clinic every time I have become frustrated with the lack of understanding about EoE. The staff at the Snowbird clinic took the time to listen to me and hear me. They trusted my knowledge of my own child and what she needed and helped us through a difficult situation with unbelievable love and compassion. I will never forget them or all they did for us. I carried my daughter to and from the clinic for four days, and on our final day as we were leaving, she walked into the clinic on her own to say goodbye!
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