However, this story is about a little girl named Emerson Nicole White, age 8, from Littleton, Colorado. We met Emerson during our stay at the University of Nebraska Medical Center. She was 3 at the time and I mistakenly asked if I could take her picture as we left for a brief cafeteria break. My wife quickly reminded me that taking pictures of a stranger's kids could be viewed as pervy. I stopped but I can still remember her face...
Long story, somewhat short. My wife and I would watch daily as a little boy next door to my daughter's PICU room pushed himself like a skateboard on his infusion machine. We knew he was also from Dallas, but sadly discovered he died a few months later. His name was Meme and he would have turned 10 on Nov 2nd. Being stranded in the hospital for nearly 8 months, we saw a number of white flowers placed on doors to silently indicate when a ICU child passed. But we also witnessed and heard some of the most "unbreakable" stories. Emerson's story is just that.
I must preface that we don't know the White family and have only been following from afar as my wife updates me periodically by way of social media. She reads me posts from Emerson's mother and is part of a support group for kids with intestinal problems. I knew the family was similarly displaced from Colorado, but quietly listened as my wife read Emerson's story and how the family was preparing to go to Disneyland as a last wish. The prognosis was awful. That was four years ago.
By the grace of God, Emerson has survived. To illustrate the fight and spirit in this child, her mother writes, "Emerson did well initially post-transplant then fell victim to a series of very severe and life-threatening infections. She spent most of the seven months following transplant in the PICU fighting for her life. She experienced one significant and prolonged cardiac code, three episodes of kidney failure, many episodes of lung failure, heart complications, and more. She was on and off dialysis and a breathing machine. Four days before Christmas she was diagnosed with a very severe bowel infection. We were told she had only a 50/50 chance of surviving through the week."
My wife and I laugh a bit when we hear couples telling birth stories, knowing that our's is "bigger". However, Emerson's life story is truly inspiring. I never like to compare sicknesses, but I can tell you that intestinal failure is one that a single surgery often cannot fix and comes without a playbook. It took six surgeries before my daughter's intestines came to life. But when Emerson's initial transplants failed, Doctors in Omaha wouldn’t even discuss the possibility of re-transplant until Emerson was breathing on her own, off dialysis, and strong enough to transfer out of the PICU. Still then, she had to prove she had “life”. She had to get out of bed and move. In the first week with a physical therapist, she broke both her legs and both her arms. To the amazement of her entire medical team, Emerson battled back to list for a second life-saving transplant. This time she would need a liver, small bowel, pancreas, and two kidneys.
A few weeks ago, I was so happy to hear that Emerson was doing wonderfully and heading back to Omaha for a routine visit. Unfortunately, more setbacks. While in Nebraska, she came down with a virus that caused a string of complications. Emerson’s blood potassium went critically low and she lost both peripheral IVs. She received 19 shots in a single day and recently went under anesthesia for a central line placement. Losing access points is one of the most dire events for these kids. As of now, the overall sentiment is that Emerson has made progress. Her mother writes on Nov 21st, "The comment made this morning was that Emerson more or less lives her life standing on the edge of a cliff (or hanging from her fingernails as the transplant surgeon professed)."
In conclusion, the unbreakable spirit of this child makes me want to do something nice for this family this holiday season. I will start with the first $1,000, but hoping others want to share in making this Christmas special for a mother and child stuck in the hospital. Any and all donations will go to toys, clothes and other travel expenses for the White family. God Bless. I will share pictures of items and updates as available.
For more details on Emerson's story, please see her blog. http://hopeforemerson.com/about/
- Michelle Pnneck
- Angela Beitelspacher
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