After three days in the hospital and little to no change, we were discharged. We were discharged at 4:00 pm and returned that same day at midnight because her symptoms were getting worse. She was only 15 months old and was barely able to articulate properly, but she kept saying, “ouch mommy” when I tried to hold her. Those words keep echoing in my mind and I sometimes wonder if there’s anything I could have done differently.
The doctor who received us at the emergency room (Dr. Judy) saved my baby’s life! She immediately did a spinal tap and initially diagnosed her with meningitis. In a matter of minutes, the situation escalated, and she was rushed to the Intensive Care Unit with at least eight different doctors hovering over her. I was pregnant at the time, and because the virus was contagious, I was not allowed in the room. It killed me… Luckily my husband was with her every step of the way. Within twenty-four hours, my perfectly healthy baby had a g-tube, a trach and machines attached to her. It was the most horrifying scene I’ve ever seen to date. At 15-months-old, she was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).