It really is true that we all go through life thinking that “It” only happens to other people. But when “It” happens to you – you are forced to look at life from a different perspective.
On May 15, 2009, my 2 year old daughter, Neely, caught a virus. There wasn’t anything special about the virus – just a typical stomach bug. In trying to fight it off, Neely’s immune system became confused and began attacking her brain and spinal chord. It is a rare condition called Acute Disseminating Encephalomyelitis (ADEM). In less than 12 days, Neely went from a healthy, happy Toddler to a heart beat and a shallow breath.
During that time, we were consumed with finding help for her. Every Doctor told us she just had a virus, but we could see her deteriorating. (She was being treated at the time by Dr. Kevin Springle and Dr. William Wylie of Christie Pediatric Group) She became lethargic; losing her ability to talk, walk, and respond. On the 12th day, we were admitted to the hospital (the 2nd time.) Throughout that night, Neely continued in a downward spiral. She lost her ability to swallow, could only take shallow breaths, and could no longer blink her own eyes. I did that for her.
I could feel Neely slipping away from me and was powerless to stop it. But the GVL Children’s Hospital and Dr. Augusto Morales, MD were on board and hard at work fighting for Neely. In less than 5 hours they scheduled an MRI, Spinal Tap, EEG, CT Scan, new films and new blood work.
We were transferred to the Pediatric Intensive Care Unit (PICU), and remained in the hospital for 18 days. Neely’s Neurologists said her condition was one of the worst they’d seen. But her recovery was quickly becoming one of the best. She re-learned abilities one by one. It was like watching her grow from newborn to toddler in Fast Forward.
She had round-the-clock therapy for Occupational, Physical and Speech. Every time we turned around there was a new evaluation or test to monitor her progress, and while those tests don’t come as frequently anymore, they haven’t stopped.
Neely has made a full physical recovery. She is monitored regularly by her physicians (Check out our Heroes), and takes anti-seizure medication. We still live with the fear that new symptoms, resulting from the trauma to her brain, will present themselves as she grows. But in many ways we are the lucky ones. (See how Neely is doing today.)
With any brain injury, each passing minute can mean the difference between full recovery and long term debilitation. You can’t afford to let anything stand in the way of getting treatment for your child. You need to be heard.
By sharing our story, we hope to show you the importance of being an aggressive advocate for your child, and understanding your pediatricians approach to patient care.
Knowledge is Power! Make sure you know your doctor and know what to look for when you are choosing a pediatrician. Learn more by reading the Actual Journal Entries from Neely’s Mom.