Day 1 - Colon Cleanout

Before I share about our day, I wanted to share about how we got here.  Several weeks ago, to meet the need of my own personal curiosity, I made a list of all the surgeries/procedures/diagnoses that Bennett has had in his short 7 years.  I'm not sure if I was able to capture absolutely everything and whether everything in perfect order.  But this is a pretty good picture of Bennett's health experience:

Bennett's diagnoses are in green.  Surgeries are in orange.  Bennett's recent dilations are in purple.  I love this flow chart because it both helps me see how some of Bennett's issues have run in to other issues.  And then, it also shows me that some things are just "flukes."  Either way, it feels hard to fully grasp that we are here again.  This chart helps me step back and see that if it feels like a lot or too much, it simply is.  Chronic diseases are just that - chronic.  They never stop.

Today started off with a call: a room is ready for you.  Once we received this call, we left mid-morning to travel the 2 hours to Dallas to admit to the hospital.  The surgeon working on Bennett asked to have a full day to give Bennett a colon clean out to make sure he is ready for surgery on Thursday.

It took several hours to admitted and to have things started but some time after lunch we go going.  You'd think hospital admissions and discharges would be quick but they are often very slow.  They require permission from multiple people and can linger on for an hour or more.  After providing a list of meds, answering lots of questions from several people and waiting around for orders to be entered into the system, Bennett was given an IV.  The nurse used this new thing I'd never heard of called a J-tip.  The J-tip forces air (rather than a needle) under the skin and administers medicine (in this situation, pain medicine) to the area in a pain-free way.  It was incredible to watch that by the time she put the IV needle in, the top of his hand had already been numbed.

By 6pm tonight, Bennett had been given an IV, had hours of GoLytely (which makes you poop) and had received an enema.  This child is absolutely amazing.  He handled every bit of it like a champ.  I am grateful that he doesn't have any pain when he goes to the bathroom anymore.  He is very brave and very comfortable with these things.  It's sad, because it means he's done them so frequently.  But it's good because it's not as scary as it used to be (or would be for most kids).

It's hard to believe Bennett didn't eat all day.  He was the most peaceful faster I've ever seen. He drank lots of apple juices and some Shasta Twist (the hospital's version of Sprite) but that was it. And only a few times did Bennett complain of being hungry. Even then, it was just a mention of it.  Mainly, he just played with his toys, watched TV or played his iPad.  He was incredibly compliant.  I just can't speak enough about the incredible calmness that Bennett embodied today.  Four liters of GoLytely and an enema at 7 years old was impressive.  I very much felt prayers for him.  He didn't once get overwhelmed or cry.  He just handled it in strides and trusted the adults around him. It was his demeanor that set the tone for the day.  All went incredibly well because of it.

Bennett's surgery is scheduled for first thing tomorrow morning (around 9am).  We met with the Surgeon and the GI doc today.  The Surgeon said he doesn't really know what he's going to do once he's in there.  He said it will all depend on what he finds.  We learned through our discussions that one of the worst case scenarios, unlikely but still possible, is that Bennett might be given a temporary colostomy.  This is similar to what he had when he was a baby.  We would then have to go back in to surgery again in two months to fix the colon again.  However, we are very hopeful things will work out just fine and the stricture can be repaired tomorrow once and for all.

We will know more about Bennett's situation tomorrow after his surgery.  Our prayer is for a minimally painful clean resection of the colon with no complications.  We are in good hands but it's still scary to hand him over to be worked on again.

Hopeful tomorrow will be a good day like today was,