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It Shook us to the Core

Article posted on Friday, October, 30th, 2009 at 5:07 pm

It really is true that we all go through life thinking that “It” only happens to other people. But when “It” happens to you and your family – you are forced to look at life from a different perspective. Make sure you know your doctor and know what to look for when you are choosing a pediatrician.

On May 15 this year my 2 year old daughter, Neely, caught a virus. There wasn’t anything special about the virus – just your typical 24 hour 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) and only occurs in 1 out of every 1.2 million children (approx). It took less than 12 days for Neely to go from a healthy happy Toddler to a heart beat and a shallow breath. That was all she could do.

ADEM-conditionDuring those 12 days, we were consumed with finding someone who could help Neely. Every test came back normal and every Doctor we visited told us that she “just had a virus.” We were patients of Christie Pediatric Group (Dr. Kevin Springle and Dr. William Wylie) at the time. But we could see Neely deteriorating. She became lethargic; losing her ability to talk, walk, and respond. The symptoms that had come with her stomach virus were replaced by new symptoms that included dilated pupils, moans, confusion, and awkward movements and coordination in her arms, hands, and fingers.

It was on that 12th day that my husband and I took Neely to the Emergency Room (for the 2nd time) Less than 5 hours went by before a new team of physicians had scheduled an MRI, Spinal Tap, EEG, CT Scan, new films and new blood work.

Meanwhile Neely continued in a downward spiral. Throughout the night she lost abilities one by one. She lost her ability to swallow , could only take shallow breaths, and could no longer blink her own eyes. I did that for her.

That night I learned what it feels like to lose a child. I could feel Neely slipping away from me and was powerless to stop it.

We were in the Pediatric Intensive Care Unit (PICU) when we learned the name of her condition and treatment plan. They began to give her steroids to shut down her immune system, antibiotics and anti-viral medicines to eliminate bacterial or viral complications, and anti-seizure medication to eliminate seizures.

We remained in the hospital for 18 days. Every second felt like hours. There were few answers to our never-ending questions and progress seemed to be excruciatingly slow. My husband I survived on promises that we made to ourselves and to Neely each night. Tomorrow will be the day that she opens her eyes. Tomorrow will be the day that she moves her legs. Tomorrow I will be able to hear her say “Mommy.” Many mornings greeted me with the crushing reality that those promises were unfulfilled. But we never stopped making them.

We poured every ounce of energy into understanding what challenges were ahead how best to overcome them. It was during that time that a miracle began to happen right before our eyes.

I’ll never forget when she finally opened her eyes and looked at me. It was the first time in weeks that I actually saw her instead of the empty stares that she’d had leading up to our hospital stay.

Each day that followed brought progress. Neely’s Doctors were (and continue to be) amazed by her ability not only to recover, but to recover so quickly. She began to re-learn 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 Therapy. Every time we turned around there was a new evaluation or test to monitor her progress. It was easy for my husband and me to become addicted to the 24-hour care and to the MRI’s and EEG’s. Even though we could see physical progress it was comforting to see clinical results of that progress in the form of EEG readings and MRI images.

sister, brain injury, miracleNeely is still being monitored regularly by a team of physicians and therapists. She is in Speech and Physical Therapy, gets routine MRI’s, but continues to make tremendous progress.

There truly are no words to describe the support and encouragement that we felt from our friends and family. The words “Thank you” are grossly inadequate. At moments when we felt completely overwhelmed with fear and exhaustion, there always seemed to be someone there to comfort and encourage….helping us to continue to push forward.

For that, my family and I are eternally grateful.

In the last 4 months, I have become a full time student of neurology, physical therapy, psychology, brain development, viruses, hospital politics and more. But this journey has also taught me so much about life:

  • To trust my instincts above all else.
  • To know that when you need it most – someone will be there to lift you up.
  • That there is amazing power in knowledge and prayer.
  • That modern medicine doesn’t even come close to having all the answers we need.
  • And that miracles DO happen every day.

I know what it is like to feel my child slip away. But I also know the sweet sweet relief of feeling her come back to me.

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5 comments

  • Wow. You had told me the story but I did not grasp the terror of the experience until reading Neely's story just now. It is great that you are sharing your story and hopefully it can provide hope for others families that face such shaky and uncertain circumstances. It is great to see God's glory when he works miracles like Neely.

  • Your story is inspiring and right on the mark. My son had a vascular ring which made it very difficult for him to breathe whenever he had a cold. I continued to pressure the Docs to find out what was going on and was told he would grow out it. Instead it got worse and we spent more time in the ER and they kept giving him more meds. Finally, he saw a Nurse Practitioner instead of his normal specialist. I plead my case again with tears and this time I was listened to. She ordered an Upper GI test and the Doctors found the real reason for his difficulties. It was the first time his Pediatrician had ever had a patient with the condition and the Specialists were completely surprised. About a month and half later he had a surgery to remove the ring. And now 3 years later he is 100% better. Still sounds funny when he has a cold and coughs, but not to the point where he has to go the hospital.

    Please keep spreading your message. Thanks

    Rachel

  • Never underestimate mother’s instinct! (or father’s instinct) I am glad you put your story out there.

  • Neely is truly a miracle! Thank you for sharing your story.

  • Just wanted to let you know that I have been thinking about you and your family. It’s amazing how far you guys have come in just a year! I am so proud of you for taking a stand and getting Neely’s story out there to help other families! You guys are certainly an inspiration! Wishing your family nothing but the best to come!

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