Sunday, January 8, 2017

Cecostomy: post op complications

Warning: a bit of TMI about bowel function and graphic skin photo

Things can never be easy when to comes to the Bear.  We are 4 weeks post-op cecostomy tube insertion.  Things started off well.  The insertion site looked good.  The first 2 enemas through the tube worked well.  The third enema did not.  The 4th produced good results.  After that, the enemas stopped working all together. (She hasn't gone since 12/27).  We have increased the amount of fluid twice and are now adding crushed ducolax to the salt water.  We did an abdominal x-ray to check the position of the tube as well as "stool load".  Shockingly (I am being sarcastic here) she is full of poop.  Way up near the tube in the ascending colon as well as the transverse colon.  Fortunately, the tube is in the correct position. It can take a bit of time to figure out how often to give the enema, how much fluid, and what type of fluid to use.

Often time people mistake constipation for diarrhea.  You have a hard mass of stool unable pass and the stool above the mass is watery.  That liquidy stool flows around the hard mass and gives the impression of diarrhea.  This is sort of what we are seeing.  We give the enema and brown water comes out.  Tons of brown water that creates quite the mess and scares the crap out of Ellie, but no formed stool or even loose poop.  So we play with the enemas - the amount, the frequency, adding the ducolax.

I am very disappointed.  The beginning was so promising.  It was an answer to our prayers.  Now, I am hoping that we can find something that works soon so that Ellie doesn't have so much abdominal distention and pain.

Ellie had a 4 day school week.  She was pulled out for 3 of those days. Not a great way to start off the year.

Post-op complication.  Ellie had this foam dressing attached to a clip.  The clip held the tube in place.  This dressing was to stay on until the chait trapdoor (permeant button) is placed.  Around this clip we have antibiotic ointment, gauze, and tagaderm (a clear type of dressing).  The drainage from around the tube was getting worse.  It was theorized that there was some back flow from the enemas up around the tube thus creating nasty drainage.  She started to form granulation tissue (excess skin tissue around the tube). Redness and pustules were starting to show up around the foam dressing.  She was seen by one of the radiologists on Wednesday and the foam bandage with the clip was removed.  Her skin was completely raw and excoriated.  Weeping and as though the top layer of her skin peeled off.  One third of her abdomen was affected. We went home with strict instructions to keep it dry and to use gauze only.  The tube was no longer anchored down meaning it could become dislodged easily, which of course freaked me out.

After just 2 days, the wound looked significantly better:

the wound looking much better.  This is all a reaction from adhesive.

We were seen by a wound care specialist who gave us some cream called Critic-Aid which is a skin barrier and broad spectrum antifungal.  It becomes like a wax coating on the skin.  On the "good" skin we applied duoderm, which is a hydrocolloid dressing that is great for sensitive skin.  On top of that, we applied another foam bandage with a clip.  So now the tube is anchored back down much to my relief.  All of this is loosely covered with gauze and then a netted band is over it.  Our goal is to have her completely healed in the next 2 weeks - in time for the placement of her chait trapdoor.

 photo IMG_2291_zpsudykfi0h.jpg

Follow us on Facebook!

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...