Sunday, November 20, 2016

Code Brown

Anyone who has spent any time with me will know that the bane of my existence, my arch nemesis, my long standing rival is…POOP💩.

I have been changing diapers since 2003.  It’s now 2016. I have 3 kids. Do the math. No matter how you slice it, it doesn’t add up.

Since 2003.  I kid you not.

For a second, I thought about not writing this post.  My kids are getting older and some issues I believe do cross the line of privacy.  Perhaps, this topic does to some degree.  I do, however, feel this is one I need to talk about.  I need to talk about it because nobody wants to talk about it.  Vacating ones bowels is gross, messy, smelly, nobody admits to it…but we ALL DO IT!!  I have written about my son’s pooping issue before in 2012 Blog Post. We are now in 2016 and quite literally in the exact same potty training stage.  The non-existent one.  I have met a lot of people during our journey with a special needs/medically fragile child, but I have yet to meet someone who has a child with a similar problem with elimination.  And that is why I have to talk about it.  There are people out there, frustrated, struggling, feeling like failures, at the end of their rope, I know there are…I am talking to you! 

The Poo Odyssey…

Let’s back up a little.  For those of you who do not know our poo story, I will give you a quick synopsis…

My youngest son, Owen, was born in 2008 with Hypoplastic Left Heart Syndrome.  From the very beginning, his ability to eliminate waste was an issue.  He was 2-3 weeks old when we had to try suppositories and laxatives. Owen is now 8 years old, and still struggles.  He is not toilet trained and does not get the urge to go.  His stomach is very distended, as is his entire digestive system.  We rely on gravity and high doses of Polyethylene Glycol 3350 (Lax-A-Day, peg flakes)to keep his system moving.  He has had an in-house “clean-out”, an O.R. disimpaction, a biopsy, barium enema, and several other tests in a desperate attempt to find the source of his stooling troubles.  The only diagnosis that has come from all of these procedures is that he has a motility issue.  Well, duh?!  But why?!

Owen has a severe and critical heart defect.  Having a fully functioning heart is needed to  maintain the rest of the human body.  Owen is lacking in that department, thus, other systems in his body cannot work properly…his gastrointestinal system is what his body has decided will suffer.  Some children will have kidney function issues, liver problems are very common, feeding and growth, having a severe heart defect will mostly likely cause issues with other bodily functions.

So, in short, my son cannot poop because of his heart.

Enter the C-Tube…

In the next few months, Owen will have a cecostomy tube inserted.  The C-tube will be a port that goes from his tummy to his cecum(beginning of large intestine).  Much like a feeding tube (or G-tube) goes from outside the body directly to the stomach. This will allow me to flush out his bowels from the top down.  Everyday, 200-400mL of saline solution will be pumped into his c-tube. For about an hour or so, Owen will have to sit on the throne and wait for everything to come out.  I know, sounds like a party, we are thinking of putting a TV in the bathroom.  You would think this would be devastating news….but it is not.  This could potentially be a life changing procedure. This could mean that for the first time in his life, Owen could become dry.  He could potentially wear underwear and not worry about soiling.  He would no longer have diaper rashes so bad that his skin breaks.  His clothing would stop having a lingering odour and require multiple changes throughout the day.  His grade 3 teacher would not have to change him at school.  He could go swimming at the beach or pool and not have to be embarrassed by dripping.  His stomach would shrink to its intended size and he would stop having pain.  He would not need a grown up to escort him to the bathroom and change his diaper.  We would no longer have to worry in public when he begins to emit strong, unpleasant smells.  As an 8 year old still in a diaper, it is a matter of time before he begins to feel shame or he gets teased for it.  But most importantly, this procedure has a good possibility of teaching his body what it needs to do.  If his G.I. system can be retrained, he could learn to go to the bathroom on his own.

This. Is. HUGE!

But first things first…the procedure.  

In the meantime, let’s talk shit…

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