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!


Thursday, April 4, 2019

Organized Chaos

Well okay then. . . I'm doing pretty good since it is only 3 weeks since my last blog post!  I'm just going to toss out some general updates because we are experiencing our usual organized-disorganized chaos over here.  Of course, I am still flying by the seat of my pants and I am pretty sure things shall continue that way until I am 6 feet under . . . or in an urn.

Psych Update:

Oh yeah, that's right. . . I talked about Ellie's self-harming behaviors a little ways back.  After many sleepless nights, feeling of like a parental failure, and incessant worrying,  I would like to report that after adjusting her mood stabilizer, adding in another baby dose of Adderall, and increasing her strattera, I have a totally different kiddo.  The emotional crying and sobbing in the morning is now more of a rare occurrence.  The agitation with hitting/biting/head banging herself or me in the afternoon has resolved.  She is a little less impulsive.  All in all, Ellie is the HAPPIEST that I have EVER seen her in her entire 9 years of life.  It breaks my heart to know that she had probably been feeling unhappy and out of control for so long.   Now it isn't all roses over here.  The Bear is still her usual toot.  That's just her - Miss Sassypant McToot Turkey Bear - and I wouldn't have her any other way.

Feeling Brave:

I had this brilliant idea that once Bear was off the nighttime oxygen, I would take a trip with her to my hometown of St. Louis, Missouri.  I kid you not, that day in October when they said we could stop the oxygen, I booked a spring break trip back to St. Louis.  Just the two of us.  Yep.  Ellie Bear and me.  As in without Andrew or another adult to help me corral the hyperactive monkey.  Up until a few weeks before our trip, I was having mini freak outs, but in the end, she was an angel [ see psych update above]   It was great to spend time with my family and I got to see some aunts, uncles, and cousins that I haven't seen in 5 years and that haven't seen Ellie Bear in about 7 years.  I have a ton of pics, but I can't share them because I forgot to ask permission.  

Someone was very excited about getting on an airplane

Just Going to Have to Hold It:

Well the Bear is a clever little thing.  E is well aware that the scissors are off limits after the one time I came out of the bathroom and discovered that her doll was missing hair and was sporting a gazillion hair bows.  I thought that I put the scissors high enough up . . . 

Last week Ellie was watching this YouTube video of a little girl getting her haircut.  So we gave her the play-doh scissors . . . obviously that's not good enough because she waited until our respite care provider went to the bathroom to take the real scissors.  You know, the sharp ones that actually cut?   (cheeky thing dragged a chair over to reach them!) Let's just say it is fortunate Barbie got a lop-sided chop and not Ellie's hair.  Needless to say the scissors are in a childproofed locked cabinet. 

Ellie's antics are not only limited to hairstyling.  Nope, yesterday it was the paint.  Girlfriend was aspiring to be a member of The Blue Man group. Clearly it is not safe for any of us to use the bathroom.

Noble Pig is now apparently a beauty salon

Dermatological Fun:

Don't forget your sunscreen, y'all!  Even if it is cold, cloudy, you're only riding in the car, etc.  I'm in my 30s and just had my first pre-cancerous growth removed from my nose on Monday.  I look like I have this nice crater on the side of my noise.  It itches like crazy, but I'll take that over cancer.

Vertigo and Neck Issues:

Once upon a time I got rear-ended 3 times within a 16 month period.  That was the beginning of my lower back issues and my neck issues.  About 3.5 years ago, I had decreased mobility of my neck with significant pain radiating down my left arm with numbness in my hand.  Two steroid shots into the disc space fixed that.  Sadly, the arthritis and cervical spine stenosis will never go away.  I think with Ellie's flop and drops, I re-pinched a nerve as I can barely turn my head to the left and I have pain starting on the back of my head radiating along my left ear to the front of my head.  I have gotten some sports massages and chiropractic work done which significantly helped my headaches, but physical therapy triggered vertigo.  I am pretty much dizzy if I change position too quickly, move my head funny, or stand for too long.  Needless to say I stopped physical therapy and went back to my sports rehabilitation doctor.  I will be getting an MRI tomorrow so wish me luck!

Unable to find photo credit other than Pinterest
Photo: myhealth.alberta.ca

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