Tuesday, April 30, 2019

How to prevent your child from pulling out their g-tube / cecostomy tube

For those of you who have been following along on this blog for a while, you know that some of my friends and acquaintances have referred to me as the 'poop guru' - yeah, not exactly what I want to be known for!  Thanks to Ellie's unique gastrointestinal system, I have learned just about everything there is under the sun to relieve constipation and get a child to defecate regularly. . . except my daughter, that is.  Anyway, this blog post comes about because on Friday, I get this call from the Interventional Radiology nurse.

IR: Anna, remember when Ellie pulled out her [cecostomy] tube?

Me: Unfortunately.  I'd like to erase that experience from my memory.

IR: She hasn't pulled it out lately (*me: Thank goodness!) and I need to know how you what you are doing because we have a child who keeps trying to pull his out.

Well okay then.  Here are a few easy strategies that have barricaded the Bear from deftly removing her indwelling colon tube:

Check that out!  I think that this is the first pic that I have shared where the  tube isn't infected and there is no granulation tissue.  Gorgeous!

For all of you The Chronicles newbies - this is a Chait Trapdoor aka cecostomy tube.  It is a button/tube goes into the ascending colon and is used to administer very high volume enemas.  Twinkletoes here thought it would be fun to only have a bowel movement every 12-22 days even with multiple dietary, lifestyle, and pharmacological help.  Puking because you have stool squashing your stomach generally isn't a good thing. That is what happens when your colon has moderate -to -severe delayed colon transit.

Moving on to what this blog post is actually about!  After Ellie pulled the tube out, I tried using those belly bands that you could get off Etsy for kiddos with g-tubes and I tried making them myself.  As adorable as they were with their fun cartoon characters and bright patterns, they didn't work for the following 2 reasons:

1. The belly band would either bunch up with movement or completely ride up on her stomach above the tube.  I think that it would have been fine if it was a g-tube, but since the cecostomy is lower on the abdomen, it just wouldn't stay covered.

2. She could take them off.  Mainly because it was fastened with wimpy velcro.

What I am about to tell you will just blow you away - okay, it most likely won't.  I went over to Amazon, my online addiction, and looked at those surgical abdominal binders that people use after pregnancy and gut surgeries.  These things are full on elastic and have the industrial strength velcro.  The problem was that I bought the generic one-size-fits all and I had to cut it in half width-wise and remove a significant portion of the length.  Then the edges would fray.  The link below is for the brand that works best for Ellie and has various option sizes. It is latex-free and it is available on Amazon Prime. (heads up: while it is Amazon Prime, it usually takes 1-2 weeks to arrive, but hey, you get free shipping!) Ellie wears the small. She is currently the size of a very skinny 6 year-old child at 44 lbs, but she did wear the same size when she weighed 7 lb heavier [someone explained to me why no one is concerned about her weight loss?! Yes, she lost weight a year ago when she stopped taking Risperdal, but still!].

That would be crayon all over her binder.  Once upon a time, I labeled her binders with a sharpie for Camp.  She now thinks all of her binders should say "Ellie" so she grabbed crayons and wrote her name all over it.  

Ellie loves the binder and I think it is because it provides a bit of compression - sensory input.  

But what about when my kid is in the bathtub or shower, you ask?  Turkey Bear wears a one-piece swimming suit for bathing.  Now I know that for all the boys out there, it wouldn't exactly be fashionable, but I will tell you it works!

There is one more thing that helps detour her from yanking out the tube.  Ellie's tube is too big for her and so it is moves around a lot and leaks horribly - gross!  Because of this, we keep a piece 4 x 4 non-woven gauze folded into quarters and secured with paper tape over it.  (if your kiddo has sensitive skin like Ellie Bear - use Critic-Aid AF around it before covering and stick with paper tape).  Notice that I said non-woven gauze.  Woven gauze, which is most commonly used in the hospitals, tends to get stuck on the tube and then you are at risk for accidentally pulling it out when you go to remove the gauze. 

Look at that horrible bandage job of mine!  Did y'all know that I used to be a pediatric ICU nurse?  That means wound care was in my job description!  No one said it had to be pretty.

Fingers crossed that some of these tips will help prevent your kiddo from yanking out his/her g-tube or cecostomy tube!


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