They don’t know what is wrong with your daughter
Ten years ago, one early morning, after a particularly difficult night during another hospital stay, the nurse looked me in the eye and said those words. “They” were the doctors, who had been rounding and meeting about us. We were a few months into her illness and still had no answers. The nurse's words shook me. It was difficult enough to have a sick child, but without a diagnosis and a plan, I felt hopeless. It was in that moment I realized that I needed to gather all the medical tests and results done so far, get every doctor's notes on her, track all her symptoms, and keep taking notes. She was a puzzle. The “zebra”, as we were told.
My daughter and I would have to keep knocking on many more doors of many more doctors. It took two and a half years to finally get an answer, but so grateful we got one. Having an organized system helped us stay in control of her health and provided the knowledge to guide care.