Avery's Story: Parent's Letter Project Kidney disorder- Avery's parents

We were caught completely off guard by our 2-year-old daughter Avery's kidney disease. It started when she came down with a pretty bad sinus infection and her eyelids were swelling up. The doctors put her on antibiotics for the infection and Zyrtec because they thought the swelling was allergy related. After a rough week dealing with the infection (she was lethargic and extremely fussy with a constant low-grade fever) we noticed the swelling was getting worse. It had moved into her feet and ankles. A urinalysis revealed protein in her urine. After more blood work we were referred to a pediatric nephrologist who decided she should be immediately admitted to Children's National.

No parent wants to hear the words "your child needs to be taken to the hospital." Even though Children's National has an impeccable reputation, that also means your kid is really sick. I admit that my first reaction was tears, but we moved into the planning stages quickly. We had to arrange for our 8-month-old son to be cared for by extended family and pack our bags for an unknown amount of time in the hospital.

We are fortunate to live relatively close to Children's National and were able to get our daughter checked in fairly quickly. Everything about the hospital was a combination of extremely frightening and at the same time comforting. The crib looked like a giant metal cage that we were forced to keep our baby in, but we knew she was in the absolute best place to get the care she needed.

After a few hours, one of the best kidney doctors in the country came to exam Avery and she immediately diagnosed her with minimal change disease. It is a kidney disorder treated with steroids, which Avery will hopefully out grow by adolescence. It was comforting having the problem diagnosed, but we still had to deal with the extreme swelling in her body, and that first night in the hospital was a rough one. She screamed through having the IV port inserted. The only thing that helped a little bit was telling her some made-up stories (borrowing heavily from the classics she isn't quite familiar with yet).

The crying continued as the medications were administered. My heart really went out to the nurses at Children's who have to endure so much crying on a constant basis. They are amazing. It turned out that first night was the worst and by the morning she was showing significant improvement. We were able to set her IV bag up with her stroller and take some walks around the floor and even visit a great playroom filled with toys. She became an expert at spotting Dr. Bear on the ceiling tiles and on posters throughout the wing.

On the second night she was able to get some much needed sleep. Throughout our entire stay, the nurses and doctors were wonderful. They kept checking in and updating us on her progress. They printed out information for us about her disease and reassured us that we would be able to manage it.

On the third day we were able to go home, and my husband and I knew we were very blessed because so many Children's patients have to endure much longer stays. Avery is still on steroids and it is likely her condition will flare up again if she gets another infection, but we have the information and tools we need to deal with it thanks to Children's National and its team of doctors and nurses. No parent wants to think about their child having a disease, but we feel lucky that our daughter was able to get the immediate care she needed, as well as follow-up in the outpatient clinic. 

Sincerely,

Avery's parents, Allison & Justin

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