Wednesday, December 10, 2008


Next week we take the next step in the mystery of Ellie's Bowel when we head to Children's for a few days of tests. Ideally the tests will show us what the inside of her bowels look like, how well her gut adaptation is going physiologically, and also how well her bowels are working.

She will have two studies done over the course of two days. On Tuesday afternoon, after being food and formula-free since midnight (NPO/NPG as they call it) she will have a endoscopy of her bowels. Surprisingly, this simple look inside hasn't happened yet in her colon, we are hoping it will tell us some things about what is going on inside. She will be under general anesthesia for this and the plan is to scope her from the top down, from the bottom up and maybe from the middle, as well.

Then after the 'scope they will snake a tube from her stomach, all the way through her small and large bowel or maybe one from above and one from below. This setup will be left in over night and then first thing on Wednesday morning, Ellie will have an intestinal manometry study done. The tube that is in her intestines is connected to a small pump, which pushes water slowly through the tube and into intestine. As the intestine contracts and tightens around the tube, it stops water flow in the small holes in the tube. Each hole has a pressure sensor (manometer) attached to it and the whole thing is attached to a fancy computer so each contraction is recorded and measured and showing a pattern of activity. This study which takes eight hours of sitting in a bed attached to a fancy machine will show us how well the muscles in her bowel contract, whether the waves are coordinated, and also if the small and large bowels are in sync with one another or dancing to separate tunes.

All of these tests will hopefully answer the question of why Ellie still needs help to poop every day. If there is an obstruction or a 'pseudo-obstruction' that slows things down we could work to fix that. A lot of kids with multiple short bowel surgeries will develop scar tissue called adhesions that can constrict or kink the bowels.

The other thing that we hope to learn is whether things are coordinated enough to think about reconnecting her bowels and getting rid of her ostomy. Our concern is if we connect her small bowel to a large bowel that is blocked or partially blocked it will create a log jam and possible re-dilate her bowel, something that we have used an ostomy to fix for more than two years.

This week we are moving towards a total lockdown with Ellie since her much-anticipated intestinal studies are scheduled for next week and we had to delay this same study last spring because of a relatively simple GI bug. It would be really frustrating to get this close again and have to postpone it because of a cold or a stomach bug so we are keeping a tight hold on the reigns until next week. They do very few of these studies each week and a delay might mean another six months.

So no gymnastics this week, except in the living room.

The plan is to go in around lunchtime on Tuesday and be home for dinner on Wednesday but all things considered, we are planning for the possibility/likliehood of staying Wednesday night as well. Something about pumping a lot of water into her bowel sounds like it may be tough to bounce back from and an extra night at the Inn may be needed.

So we are collecting our DVD's for the 8 hour test to keep us all entertained and debating the old crib/cage versus a big girl hospital bed. Thankfully Ellie's taste in movies has evolved from the Wiggles and Barney to more watchable movies like Toy Story and Monsters, Inc. We will still bring Kipper along for the ride. Somehow his accent is an anesthetic for all of us.
It seems afte the pre-op appointment on Friday that the only thing to resolve how we are going to tear Ellie away from the Christmas tree and her collection of animatronic snowmen that came from her great grandmother:


Anonymous said...

Hi Brogans, we are inpt right now and will still be here for your great manometry adventure. I would love to get together to say hi!

Eithene's manometry experience was, well it was terrible to be frank. It was very painful and extremely agitating for her and lasted close to 12 hours.

I am praying Ellie's is much less traumatic, but I will try and find some exciting distractions to bring by.

What floor will you be staying on?


Anonymous said...

Hi guys,
Well, I'm not sure how to follow that. Here Bob and I are, snuffing and sneezing in Maine and keeping our germs far away from the beautiful girl I hoped to be cuddling with. What a nice big tree! Gramma's tree is going up tomorrow, but she doesn't know that yet. We'll all get through this week and then we can really go Christmas crazy!
Talk to you soon. I love you.
Aunt Beth

Unknown said...

Leigh's favorite movie is Monsters Inc too and I still don't mind watching it. Dora is creeping into the favorites and she's a little tedious!

Ellie is doing a good job of telling Daddy how to put that star on... just wait Gib it gets worse!

She is so beautiful. Hope her study goes well and you all have a healthy Christmas.

Much love,
Alicia, Chuck, Leigh & Blake