Emerson W. - Quilt Finished in 2009

Born: September 12, 2006

Illness: Metabolic Disorder, Multivisceral Transplant (2)

A Thank You From Emerson's Family!

5/22/09

We received it!!  It's beautiful and Emerson LOVES it.  It's so cute - she loves looking at all the little squares.  Not much has kept her attention lately, but this certainly has.  Thank you so much!!

Erika and Emerson

Emerson W.'s Story

Written by Emerson's mom Erika in December 2008

Emerson Nicole (Eme) was born on 9-12-06 in Littleton, Colorado. She was induced 3 weeks early, ending a long and difficult pregnancy for Mom! We knew she would not be born healthy, but could never have been prepared for what lay ahead.

She has a primary Metabolic Disorder. It has caused many problems in her short life, including seizures, severe hypoglycemia, anemia, and developmental delay. Most significant, though, being chronic intestinal pseudo-obstruction leading to complete intestinal failure. As such, she was unable to eat or drink by mouth and received all nutrition via a surgically placed central catheter (central line) into a major blood vessel by her heart. Unfortunately, Eme developed life threatening complications from this type of administered nutrition, including liver damage, clotting off of major blood vessels, and repeated episodes of sepsis. She’s been in and out of the hospital all her short life.

Eme’s most recent trial, began February 7, 2008. I kissed her two older brothers – Collin and Bradley – goodbye and promised to see them after school. I went to wake Eme and she wouldn’t arouse. Her temp was 106°. I quickly swept her up and she started to seize. We rushed to Denver Children’s Hospital where she was admitted with severe sepsis – a fungal infection and multiple bacteria in her blood. She went into DIC (disseminated intravascular coagulation - an acute, life threatening blood clotting disorder). That day started a chain of events that would lead us down a path we never knew existed. That day would be the start of the longest, most emotional year of our lives. That morning started with a promise to see the boys after school… that morning was the last I spent at home. Up until now, 10 months later, Emerson remains hospitalized in the PICU, now at the University of Nebraska Medical Center in Omaha, Nebraska, over 10 hours away from her dad and brothers in Colorado.

Following the episode of severe sepsis in February, Emerson continued to battle infection, after infection, after surgery, after trip to the PICU and back. Birthdays and holidays passed and the infections persisted. In April we were told she was losing IV access and without it she would not survive. Her surgeon told us she had 6-12 months left to live.

In an attempt to save her life, Emerson was life flighted to Omaha, Nebraska for transplant evaluation – liver, small bowel, and pancreas. This risky and complicated surgery is not performed in Colorado. The evaluation lasted 5 days and on April 30th, 2008, she was officially listed for a transplant - a team of surgeons in Nebraska had decided to give our sweet angel a chance. It was an amazing day, so filled with gratitude and hope.

Emerson remained hospitalized and continued to battle through repeated episodes of sepsis, including yet another bout of DIC, when 49 days later on June 18, 2008, we received “the call”. She was life flighted back to Omaha where surgeons removed 2/3 of her stomach, all her large bowel and spleen and transplanted her liver, small bowel, and pancreas. All organs were from a single donor of similar body size. The surgery carries 2 and 5 years survival rates of 80% and 50-60% respectively. We are so thankful to the donor family, and think of them often through this very difficult time.

Emerson spent several months in the PICU following transplant and battled through more infections, several trips back to the OR, and a bout of kidney failure. We were told to “call the family in” once, but Emerson fought back against the odds yet again, as she had done every time before.

Things were looking better until October 11th, when Emerson spiked a sudden, high temp. I knew she was very sick. I knew it was bad. She struggled through the night and the next morning she coded. I was sitting in the ICU waiting room while they attempted intubation and heard the announcement, “pediatric code blue room 5304”. Those words and the events to follow would change my life forever. I rushed back to her room and the surgeon met me in the hall to say Emerson was not going to be okay. He carried me to a small, private room and explained that her heart had stopped beating and all her organs had shut down. Chest compressions were being delivered and they were attempting to resuscitate her, but it didn’t look good. I begged him to return to her. Time stood still. I waited with panic and fear for the door to open again, all the while secretly wishing it never would. I knew at that time there would be no going back - the finality was unbearable. I didn’t want the door to open, I didn’t want to know. As long as I didn’t know, she could still be alive.

The door did open and the surgeon said they had successfully restarted her heart, but she was extremely unstable and the situation looked grim. She was on 4 pressers and her blood pressure remained dangerously low. An echo showed the left side of her heart wasn’t pumping and the right side was very weak. Her dad, brothers, and grandmother all flew in that evening. By the grace of God, and thanks to the amazing medical staff in Omaha, Eme survived that first day and remains with us nearly 6 weeks later. Her heart and liver have recovered, although she remains in kidney failure. She is on dialysis 12 hours/day and relies on mechanical ventilation for breath. She is improving, though. She still has a long way to go, including lots of rehabilitation. And it will be some time before we can adequately assess her neurological status. But she’ll survive! What a fighter… what an inspiration… what a miracle!

As she struggles through post-transplant complications it becomes abundantly clear that the surgery itself was the “easy” part. It is the recovery in the months and years to follow that will be very difficult and will ultimately tell her story. She is sure to have more setbacks and she is sure to struggle through bouts of rejection and infection. There is no time at which her body will accept the new organs as her own, rather she’ll be on strong medication to suppress her immune system for the rest of her life – this in an attempt to prevent rejection. She is nearly as likely to reject her new organs 10 years from now, as she is today.

One thing is for certain, though, without the transplant she had no chance for “10 years from now”, she would not have survived. She will live now with an increased risk for infection, many daily meds, and an ostomy bag for the rest of her life. If it’s the only way to have her in my life, though, I would do it over and over again. I couldn’t imagine a world without her smile. She is the strongest, most beautiful fighter I’ve ever known, and I’m hopeful she will overcome the many obstacles still ahead. For now, we’ll take each day as it comes and be thankful for every moment we are given with her!