To Hell and Back, Part 1

As promised, I’ve finally gathered the energy to recap the trip to Colorado that nearly did my family in and explain how it relates to me seeing Adele this summer (part 3). As I write this, my children are safe in their beds sleeping peacefully as if it never happened. The younger one doesn’t even remember the experience; the older one remembers it and thinks it’s fun to tell the crazy stories, but it didn’t leave a lasting impact on him like it did for my husband and I.

The story you are about to read is actually a pivotal moment in my life. The experience and how it fits into the last four years is largely responsible for the amazing personal growth occurring in my life right now, but my heart is racing and I’m frequently choking back tears as my fingers fly across my keyboard.

Over the course of late-spring and early-summer of 2012, my youngest son was diagnosed with eosinophilic gastroenteritis (EGE) and adrenal insufficiency (AI). He had previously been diagnosed with failure to thrive, IgA-deficiency, and asthma. By far, AI was the most dangerous condition, which was exacerbated by the frequent vomiting and constant inflammation and stress caused by the EGE and other issues. He turned two years old during the 4-month span of receiving the EGE and AI diagnoses. He had become increasingly ill over the previous 18 months, including frequent trips to the ER. His height and weight had completely flat-lined after his first birthday. In April 2013, he received an NG tube (a feeding tube that remained taped to his cheek, running into his nose and down his throat into his stomach). He threw the tube up on a weekly basis requiring it to be placed again. THIS. WAS. AWFUL. In September 2013, the NG tube was replaced with a sleek, more comfortable MIC-KEY button [enteral feeding tube] surgically placed directly in the wall of his stomach.

Because he had so many rare and incompatible diagnoses, we were encouraged to seek additional answers. Did he have a genetic condition that tied all of this together? What was the baseline cause? When did it start? Was he born this way? How has he survived? Will it end? Why is he such an anomaly? (He has other less severe mutations like a heart murmur and a number of physical characteristics associated with a variety of disorders which played into the confusion, but they aren’t really pertinent to the rest of this story.) We considered several children’s hospitals across the country and decided on a program coordinated between both Children’s Hospital Colorado and National Jewish Health. In November 2013, we were lined up for multiple appointments between endocrinologists, geneticists, feeding therapists, immunologists, allergists, blood draws, and allergy patch tests each day between the two hospitals for the entire week before Thanksgiving. We knew it wouldn’t be fun, but we felt we needed to get outside opinions. We hired a sitter who would join us on the trip to keep our older son occupied so he could come with us. In hindsight, it probably would have been better to leave him at home with grandparents, but we had no idea it was going to be so rough. As I said, ultimately, he seems to have recovered from the trip well and loves to tell the tale.

Denver is about a 9-hour drive from where we live so we had arranged for our sitter to arrive at our house early in the morning on departure day so we could throw her luggage in the van and hit the road. The chord started to unravel the night before.

Click here to read Part 2.