Nixon and Hirschsprungs Disease | Where we’re at

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We were in our GP’s office today, and as he turned his monitor around to show me some test results I saw the words in bold, accented in fluorescent yellow; HIRSCHSPRUNGS CONFIRMED.
I already knew this of course.  We ‘knew’ a month ago when the surgeon called and said “Nixon has Hirschsprungs Disease”.  We knew last Monday after baby’s second round of biopsies failed to show ganglionic cells where they should be in his lower bowel.   But I hadn’t seen it in black and white and hence, I don’t really think I had felt it.
So.  Nixon has Hirschsprungs Disease.
Basically, Hirschsprungs is a congenital disease (meaning it was present prior to birth) resulting in a lack of nerve cells in some or all of the large intestine. Nerves are essential in causing muscles to relax and contract, so an absence of ganglionic cells results in a large intestine that can’t move waste down the line.
The only fix; surgery.
Many of you have followed my pregnancy and our lives over this past year, you may remember that Nix had a pretty traumatic birth, that even at 10 lb 2 oz / 4.52 kg he was hospitalized with Failure to thrive, he struggled to feed and had a hugely distended belly. But, he did pass meconium after birth.  I had never given any thought as to why every medical professional asks the question of every baby, “did they pass meconium?”.  I now know that failure to do so is an early indicator of Hirschsprungs.
So Nix flew under the radar for about 4 months until we started experimenting with solids.  This became the season of month long stretches between bowel motions.  He was never in pain or seemed bothered, but all of the usual remedies failed to help him.  The only thing that would get him to poo was a suppository.
Fast forward to today, and my poor baby has chronic diarrhea multiple times each day, between 3 and 5 huge blowouts.  I’m about at the end of my rope with exhaustion and worry and his pull-through surgery is scheduled for Monday.  This is where they will remove the diseased portion of his large intestine and reconnect the plumbing, hopefully without the need for a colostomy.
Holy shit.