Friday, November 11, 2022

Cecostomy Tubes R Us

Here we are - two posts in 30 days! It's scandalous, I tell you!  Seriously though, I bet you all thought that I abandoned ship and would revert back to neglecting this blog.  Well. . . ahem, *whispers* I thought about it, but then I figured I'd present you with more random medical stuff, some pics, and the usual Ellie Bear antics.  Yes, antics on steroids because you know, hormones and puberty.

If you've been following The Chronicles of Ellie Bellie Bear for a while, you know that I love to get into all things medical.  I am a former pediatric nurse practitioner turned mama bear to a sassy 13 year-old with Down syndrome and other random, semi-complex, but not serious medical issues that pretty much have nothing to do with her having Ds. Please the disclaimers listed on the side of my blog.  

Now on to the actual point of this post.  There is a point?  In case you cannot tell by the title, Twinkletoes still has her cecostomy and for the most part, it has been a Godsend as her constipation is finally well controlled and she is no longer fighting us with the ante-grade enema administration. She seems to be happier now that she doesn't have weeks'-worth of stool packed into her gut and she is eating better and finally no longer failure to thrive.  It took us some time to find a good regime and we have to tweak it here and there but she is now getting 175cc of SMOG through her tube 3 x week.  SMOG is saline, mineral oil, and glycerin. Sometimes we toss some Milk of Magnesia directly through the tube if she seems to be getting backed up.  The type of enema through a cecostomy is different for everyone -some people only need water, others need saline, etc.  We were hoping that she would only have it for 2 years to allow her colon to snap back to its original size and elasticity but here we are 6 years later and she just cannot seem to go on her own.  The kiddo may be a cecostomy lifer and I am actually okay with that. 

That being said as with any ostomy and with any medical device (Chait Trapdoor), there can be things that go wrong.  The list includes infection, appliance failure, skin breakdown, infection, parastomal hernia, and tube dislodgment.   

**Even with all of the possible complications, I firmly believe that for Ellie, this cecostomy has vastly improved her quality of life and my husband and I do not regret her undergoing this procedure.

Photo Credits:
Left: Cook Medical
Right: Arya, Shruti & Gupta, Nancy & Gupta, Rahul & Aggarwal, Arun. (2016). Constipation and Outcomes of Cecostomy. American Journal of Therapeutics.

Ellie has what is called a Chait Trapdoor.  It is a rectangular-shaped button that sits flush with her abdomen.  The tube itself has a straight piece turning into a "pig tail" or corkscrew.  This tube is typically replaced under fluoroscopy with sedation every 9-12 months.  Ellie spends more time in recovery than the length of the actual procedure.   The usual risks include bleeding, infection, device failure, and gut perforation.  I think she has had it replaced 6 times.  One for each year and then a little extra one from way back in the day when the Princess StinkyPants pulled the tube out

Taken a few years ago, this is how the Chait Trapdoor should look.

Chait Trapdoors come in Small, Medium, and Large.  The size is not determined by its diameter, but rather the length.  As a person grows, the colon grows and a longer tube will eventually be needed.  Having the wrong size tube can lead to all sorts of issues.  Unfortunately, I sort of feel like it is Goldilocks and Three Bears in trying to get the size right. 

Photo Credit: Science Direct

*Some of the images in this post may be considered graphic by some.*


For years, the tube was the perfect size sitting flush to her abdomen, but then last year the tube placed was too loose.  I was told it was the Small but the thing was sticking way out from her abdomen.  When she would go to defecate, it would come out to the first coil.  I would say "Ellie fix your tube!" and she'd push it back in.  It wasn't a horribly huge deal because she wears an abdominal binder (see this post) so it was keeping it in place.  Nonetheless, it was a defective tube because it was labeled as a Small in the sterile package but it wasn't actually a small.  With a tube that is too loose, there was stool leakage around the site which lead to skin breakdown.  She has alway had leaking but this was a bit excessive.  Think about a baby in diapers, they are at risk for skin breakdown and yeast infections.  Preventatively, I would use Critic-Aid-AF around the site and keep covered with 4x4 gauze folded into quarters. 

This was Ellie's tube from last year - notice how far it sticks out.  

Even with all the preventative care, such a moist environment would lead to skin breakdown, like what you would see with a diaper rash and eventually infection.  Typically, I would slap on some diaper cream. Well maybe not slap, but very carefully and gentle apply.  I prefer Boudreaux butt paste, but really any diaper cream with zinc works.  If that didn't resolve it, then adding some Lotrimin cream - yes the athlete's foot medicine- twice a day for 2 weeks would also help.  Unfortunately, my skin sensitive little Bearity-Bear would still occasionally need us to whip out the big guns in the form of an oral antibiotic such as Keflex and once she needed oral Diflucan because it was yeast and bacterial.  (Note: Ellie is notorious for getting infections in general, not just at her cecostomy site)

Left: Just after Ellie had her ostomy made, she had a bad reaction to the dressing adhesive
Right: excessive drainage saturated the gauze dressing resulting in skin irritation.  

This is a combination of bacterial and yeast infection.  She required both an oral antibiotic (Keflex) and an antifungal (Diflucan) to clear this up.


Guess what happens when you have a child going through a massive growth spurt?  Any guesses?  Just two months ago, Ellie had her annual tube replacement.  She also packed on a bit of weight since then and all the sudden she developed this soft tissue swelling adjacent to the tube seemingly overnight.  I panicked and was worried about a parastomal hernia (a hernia near an ostomy), which is actually not an uncommon thing.  After a quick trip to the Bowel Clinic where she got to visit with her beloved Dr. R, the hernia was thankfully ruled out.  Yes, the little Turkey still loves her doctors. Ellie's tube is officially too small/short.  It is creating an indentation into her abdomen and causing soft tissue swelling and irritation.  She is starting to have the beginnings of a pressure ulcer where the tube is digging into that swelling.  I am now applying Meriplex, a silicone foam bandage under her tube to protect the skin until Interventional Radiology can fit her in for a new, larger tube.  I am so frustrated because she *just* got this current Chait Trapdoor and now we need to sedate her again!  Of course, my medical frequent flyer kiddo just takes all of this in stride.  As long as she still can get her salad with broccoli (she's an odd duck) once she is home, she is a happy camper.

Soft tissue swelling due to the tube being too small.  You can see how the tube is pushing into her abdomen. She has a Stage 1 pressure ulcer forming right where the tube is rubbing against the swelling.

As usual, it's fun times over in our household!  Fingers crossed that I hear from IR soon.  Our children's health system in Austin has only ONE interventional radiologist now and so the wait may be a while.  

More on Cecostomies:


While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.

Medical Disclaimer

The information in this blog is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web blog is about my parental experiences with Ellie for general information purposes only. All health questions and concerns should be directed at your medical care provider.

Monday, October 17, 2022

The Bear is Back!

A kind soul reached out to me the other day offering words of encouragement and it made me realize that I have neglected this blog for *gasp* over two years and that apparently people are still reading! 

When Ellie was much younger, I often wondered why there were so few blogs related to older children and teenagers with Down syndrome.  Now that I have *another gasp* 13 year-old Ellie Bear, I realized that life just takes over.  Along with the usual school, therapies, and doctors' appointments, there are many more extracurricular activities and social events.  I have recently gone back to work.  Not in the medical field but a complete career change to literary PR and marketing.  Yes, I realize that is pretty much the complete opposite of what my degree is in! 

All of the above has left less and less time to sit down and blog.  Not to mention, to be perfectly honest, these blog posts took a lot of out me and took a lot of time.  It can be difficult to open oneself up like that and then I wanted to ensure that I was/am respecting Ellie while also providing accurate information.  While I highly doubt I will be posting very frequently, I do plan to post at least more than once every two years!

This is going to be short but I will tell you that Princess Twinkletoes is doing well!  She is in the 7th grade and thriving.  She still has a fair number of non-major random medical issues but we are all starting to recognize that it is "just Ellie".  It feels as though once one issue is resolved, another one pops up.  She has total teenage attitude with the growling, arms crossed, foot stomp when she is peeved and some days I have to search deep into my soul for patience! 

First Day of 7th Grade

She's the Hamburglar!

Notice a theme?  Chick-A-Boom loves her black and white stripes!

The pandemic has been tough.  Having a child with an immunodeficiency is rather isolating. For a while, it felt like the world was going back to normal while we were still  (and still are) being hyper vigilant.  Now that we are all boostered and blood tests shows that she developed antibodies, we are starting to venture out more. 

E loves her Adaptive Dance Class

Summer 2022 - Camp CAMP

In trying to stay safe, my husband had the bright idea to buy an RV so now we are embracing the RV life.  I am an old school camper - think tents whereas my husband has a great fear of bugs, birds, lack of AC and lack of WiFi.  The RV is a good compromise.  Ellie refers to it as the "big bus' and loves it! We have gone down to Port Aransas, TX a few times and then we went up to Wisconsin over the summer to visit my brother. . . only my brother got Covid so we didn't see him! This Christmas, we will embark on a holiday trip to California.  

I am hoping that all is well with all of you!

~ Anna


 *While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.

Thursday, July 9, 2020

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 mid-March due to the pandemic and due to the fact that Ellie has immunology issues along with asthma and other underlying health issues.  The CVS drive thru is considered a vacation at this point and I long for the days when I can go to Target and grab coffee with a friend. 

True, I have neglected this poor blog for *gasp* 7 months and this is just a quick post about face masks.  I had shared a pic of Ellie modeling her fancy smancy Mickey Mouse face mask on Facebook and several people asked where I got it.  The truth is that I made it which I know is shocking for many because I can't even sew a straight line.  You could, in theory, hand sew this mask, but I do recommend a sewing machine.

For those of you new to this blog, Ellie has Down syndrome.  Her unique facial structure, such as low set ears and a flat nasal bridge can make it rather difficult for her to wear a face mask that fits well without falling down her nose or off her ears.  Not rocking an extra chromosome?  That's okay, this mask is also appropriate for the general population.  For any mask, no matter the style, you want to make sure both the nose and mouth are completely covered and fits snug on all sides.

I tried the 3 masks above on Ellie:
Top: tie mask
Middle: ear loops
Bottom: elastic around the head

I originally started working on those tie behind the head pleated masks with a pocket for a filter.  A google search produced several tutorials so I just went with the first one that popped up.  I hated having to constantly retie them so I tried those draw string clamps things (see below) to make it easier. I also used bias tape for the ties because I was lazy, but you can make your own ties.  While it works fabulously for me and Ellie adored her cupcake one, it kept sliding down her nose even with using wire for a nose strip.  

Plastic Toggle Rope Locks: 

That led me to trying the over-the-ear loops.  After an extended search on google, I found an excellent video tutorial from EasyToSew that was easy to follow along.  This is the video that I am now using for all of my face masks. The video towards the bottom of this post.

Anyway, behind the ear loop mask was an epic fail.  With her low set ears, common in people with Ds, the mask wouldn't completely cover her nose.  As you know, the mask won't do much good if you don't cover your nose! Then there was the part where the elastic wouldn't stay around her ears.  The damn thing just kept falling off.  Even though the ear loops didn't work, I really liked how fitted the mask was.  (This is actually the mask that I currently wear for myself).  

I liked the fit of this mask, but it wouldn't say over her nose.

I used this video for the basic pattern and construction of the mask.    The pattern in the video is perfect for an adult so you will have to make a few adjustments for a child or an adult with a larger head.  I also eliminated the elastic for the ear loops and instead attached longer elastic to go completely around the head.

This is a tri-layer mask meaning there are 3 layers of fabric.  The third layer also serves as a pocket if you want to insert a filter.  I use a coffee filter folded in half.  If you use a filter, you must change it out each time you use it.

Pattern: I cut out the pattern as shown in the video. For Ellie, I then shortened each side on the end by 1.5 cm so that it would fit her smaller face. I did not make any changes in the top-bottom dimensions. (For adults with larger heads, I added 1.5 cm)

For the nasal wire, I use aluminum nose strips that you often see on medical masks - the ones without adhesive. I did use two pieces of floral wire early on, but the wire eventually breaks and pokes through the fabric.

Instead of using elastic for ear loops, I had the elastic go all around her head. I used 1/4 inch flat elastic (also on amazon). Ellie is 10 years-old and has a relatively small head so I went with:

Upper elastic strip: 11 inches
Lower elastic strip: 8 inches

You want to make sure that the elastic is snug enough that the mask will stay in place, but not so tight that if feels like her head is in a vice. You may need to play around with the lengths. If you aren't sure, it is easier to use longer elastic strips and then tighten it if need be.

Finally, after you've done all of that and your kiddo still refuses to wear the mask, you can check out these tips:

Tuesday, December 24, 2019

Happy Holidays

May you all have a wonderful, safe, healthy, and relaxing Holiday season full of laughter, love, and copious amounts of coffee!

Sunday, December 1, 2019

I have no idea what I am doing: fostering independence

I really wish that parenthood came with an instruction manual.  Only modify that manual to be about special needs parenting and have it contain the knowledge and wisdom of a parents, teachers, psychiatrists, occupational therapists, speech therapists, patient advocates, and well, everyone!

All children are unique individuals with their own strengths and struggles so really you cannot lump them all into one group, but I do wish that I had some guidance.  I honestly have no idea what I am doing here when it comes to teaching Ellie life skills.  Am I doing too much for her and holding her back?  Or are my expectations too high?

My goal, like most parents, is to help my child to be come self sufficient.  She already is and will be capable of a great many things and while I am not under the delusion that Ellie will grow up, move across the country and live 100% independently without any supervision, I do want to foster her independence as much as possible.  What that will look like in the future -whether she lives in a nearby apartment nearby with someone checking in on her vs. a group home vs. living with us, I do not know. The thing is, I have absolutely not idea how to identify and teach her the necessary life skills to set her up for success.

Right now, I have the following short-term goals in mind:

A. Be able to make her own "meals" (a Nutella sandwich is a meal - don't judge!)

  1. Able to remove bread from package
  2. Open/close the Nutella jar (she's getting there!)
  3. Properly hold knife to remove Nutella from jar and spread onto bread
  4. Be able to open a package of food (i.e. remove the wrapper from a nutrition bar)
  5. Be able to unscrew the top to her supplemental nutritional shake

B.  Get this kiddo poop trained!

  • First and foremost,  this is out of my control and Ellie's control given her complex GI history and colon situation, but it is a goal nonetheless.

C. Able to change her bedding and put her clean laundry in the correct drawers

  • Bonus points for folding.

D. Drink from an open cup with all of the contents ending up on the floor or herself.

E. Understand the concept of time.

  • Ellie can read both an analog and digital clock to the 1/2 hour mark, but she doesn't really under the concept of time.  For instance, if I were to say that Kyla comes at 4:00, she does not understand that.  If I say you've got 5 more minutes, she only seems to grasp it if I set a timer.

Sounds easy, right?  It isn't.  I have a 10 year-old daughter who thinks like a 4 year-old with the fine motor skills and receptive language understanding of a 3 year-old.  Are the goals that I have set for her appropriate for her developmental level?  Am I pushing her too much or not enough? I feel like a horrible parent when I think it would be so much easier and faster to just do it for her (obviously, I am trying to avoid the "just doing it for her").

Oh and by the way, do not google "how to use a knife" or you will get some weird and disturbing results.

This brings me to changing my mindset.  Rather than focusing and lamenting about what she can't do (yet), instead let's celebrate what she can do all while trying to figure out how to give her the tools the she needs to succeed. . . . once I figure out what those tools are, that is.

After all, she has already attained several life skills in the past few years and I know that she will continue to gain more!

What she has already accomplished:
  • Laundry -  This kiddo has been using the washing machine with minimal assistance for years now.  I need to work on the whole folding clothes and sorting thing.  Also, I need to keep reminding her that if she is going to wash a lovey, she should wash her other dirty clothes at the same time.  As in, do not do an entire wash cycle for 1 blankie!
  • Cleans house - dust, wipes counters, sweeps/mops floor
  • Orders food at a restaurant - this is where her speech device comes in handy
  • Swallow pills
  • Administer her inhaler with assistance
  • Makes her enema for her cecostomy tube
  • Differentiates between trash and recycling (can someone educate my husband that cardboard can be recycled and styrofoam cannot?)
  • Able to get dressed, including socks and shoes
  • Able to put on jacket and pull up zipper
  • Uses a key to unlock doors - while this is good, it also means she is now able to get into my office!
  • Packs her lunch - granted her idea of a lunch includes  an entire bag of grapes, a bag of baby carrots and an unwrapped zone bar, but at least she didn't forget the ice pack!

So. . . if anyone has that special needs parenting instruction manual please send it on over to me!

Monday, October 7, 2019

October is Down Syndrome Awareness Month: The Many Faces of Down Syndrome

October is Down Syndrome Awareness month and to celebrate, I'd like to introduce you to some of the members of this amazing community that I became a part of when Ellie was born with Ds. While all people with Down syndrome carry 3 copies of the 21st chromosome and share some facial features, they are all unique individuals just like everyone else.  They look like their family members and they have their own interests and strengths.  

Wyatt is 10 years old. He loves his big brothers, walking on the beach, reading, superheroes and playmobil!

Camryn goes by Cammie and is 8 years-old.  She loves the dirt, rocks, popsicles, swinging, and sliding. She is all and all full of energy, happiness, and love.

Hannah is 18, a senior in high school. Hannah loves singing, dancing and drama. Plus bowling and tennis. We have just been given the exciting news that Hannah is on the Homecoming court!

Ishika Pande is 10 years old and she loves dancing . Isla is learning an advanced level of Indian classical dance and has had more than 20 performances on stage solo and group from age of 6 . Other than that she loves talking a lot , cooking her own recipes and dressing up.

Ian is 9 years old. He loves school ,swimming, and the park. Ian is quite the social butterfly!

Kayla is 16 years old and loves archery, golf, baseball, swimming, coloring, dancing, and her younger brother!

Ruby is 8 years-old.  She loves dancing, her pet dogs, and slushees!

Amber is 9 years-old and she loves swimming.  
She has the nickname of AwesomeAmberSkye!

Alex is a 24 year-old senior in the MasonLife program at George Mason University. He likes sports especially swimming and basketball. He likes hanging out with his friends, playing video games, going movies and going to parties or just grabbing a couple of beers and watching football on the weekends.

Avery is 12 years-old. She loves school, basketball, swimming and cheerleading.

Julian is 9 years old and he loves to color, draw, and read.  
He enjoys gymnastics, dance, swim, and making silly jokes.

Cora is 8 years-old. She loves puzzles, music, and reading.

Ellyssandra Corinne aka Sissy is 8 year-old baby B of surviving triplets. Elly loves music to dance and singing and signing her favorite song. She loves Moana and Mary Poppins and swimming and running. Elly loves hanging with her animals her dogs Billy (which was Elly's first word) and Daisy. Elly is good friend and happy girl ahe has enriched our lives and taught us so much. Mommy and daddy and big brother Jorge Jr. ^^8^^ and your little brother Rory couldn't be prouder of you Sissy. 💙💖💙Triplets Forever

Benji is 9 years-old and loves playing with his siblings.  
He loves books, music, and nerf guns.

This is Ellie aka Ellie Bellie Bear aka Princess Twinkletoes and she is 10 years-old.  She fancies herself to be a singer and fashionista.  She loves to dance, swim, and ride horses.

12/27/1958 - 12/14/2012
This blog post is in loving memory of my Aunt Peggy.  Peggy loved bowling, swimming, and listening to John Denver.  She passed away just a few days before her 54th birthday in 2012.  She was a beloved daughter, sister, aunt, and great aunt.  Peggy, you are forever loved and forever missed.

Thursday, September 26, 2019

Everybody poops. . . or not

Welcome to another episode of "Why Won't My Child Poop?" 

Today's cast of characters feature Ellie Bear, a distraught Mama Bear, clueless ER staff, members of the Comprehensive Care Clinic, and a jolly x-ray technician.

Want to know why this little Turkey is smiling?  This is outside Dell Children's Medical Center.
 She was there for her appt with Dr. Simon.  Elli is in luv with him. 

First, a little background:

I am unfortunately known among many parenting groups as "the poop guru" (seriously who wants that title as their claim to fame?) as I can pretty much get any child to poop. . . except my own.

Remember way back when Ellie went 22 days without defecating?  Well, by end of August we were back to that.  Okay, that is an over exaggeration as this go around it was more like 6 days, but given her surgical intervention from 2 years and 9 months ago, constipation shouldn't even be an issue.

Sadly, all of my experience as a former pediatric nurse practitioner and working closely with her gastroenterologist pretty much amounted to big amount of nothing in the Bear's land of excrement.  For those of you who have been following this blog for a while, then you are aware of such lengths we went to in the past to regulate Ellie's GI tract and we now know that she has what is called moderate-to-severe delayed colonic transit.  That's a fancy way of saying Ellie's colon doesn't move stool through it, but instead sits there getting harder and harder thus distending the colon.  If you really want to know the entire story as to what interventions, diagnostic tests, and whatnot that we have tried,  you can search this blog for "constipation" or "cecostomy" or click on the label on the right side bar or if you are feeling extra feisty, google "cecostomy" and this blog pops up.


For those of you who are new to the Bear's adventures, Her Royal Stinker Butt had a cecostomy performed surgically back in December of 2016.  The purpose of this tube is that it allows for high volume enemas to be given directly into the top of the colon, thus flushing her out.  There are many types of enemas, but we were pretty much sticking with saline.  In theory, I know isn't everything great in theory?  Anyway, in theory, these enemas would keep her colon mostly empty and thus preventing her from getting constipated.  For the most part, it worked . . . until July when we were finding ourselves have to near daily enemas via the tube and even some rectal ones with minimal results.

Medications that cause constipation:

Do you ever read the side effects of medications?  Nearly every single of one of them go like this:

  • Headache
  • Diarrhea / Constipation
  • Nausea
  • Fatigue /Insomnia

So . . . Ellie Bear lost weight about 18 months ago.  Some of it was expected because we took her off of the Risperdal which caused excessive eating and excessive weight gain.  What we didn't expect was the amount of weight that she lost - over 7 lb.  Then that was it.  She just stopped growing for the most part.  She was still eating close to 1800 calories/day which is a lot of a child her age with Down syndrome (people with Ds have about 10-20% slower metabolism compared to the general population), but other than growing in height a little less than an inch, she hovers around 46 lb.  She is now 10 years-old.  She is not on the growth chart for weight while she is 18% for height on a Ds chart.

First vs. Last day of school last year

Where am I going with this failure-to-thrive nonsense?  Appetite stimulants!  That's right, GI has determined that she is 5-10 lb(!!!) underweight and she is probably a kiddo that just has a high metabolism and thus needs more calories. (E has a history of failure to thrive and again, there are several posts on this blog that address the FTT and determine what was the cause). Therefore, we started her on cyproheptadine (Periactin), which is a prescription antihistamine that works as an appetite stimulant (and along a migraine preventative FYI).  Again, where am I going with this?  One of the top side effects is. . . ding ding ding freaking constipation!!!

Mismatched shoes are in vogue right now - as per Fashionista Ellie

The point of this blog post:

Okay y'all.  Now that we've establish that my daughter was no longer excreting fecal matter on a regular basis thanks to a medication, she ended up in the ER.  After 2 months of never getting fully cleared out and then 6 days of nothing at all.  Absolutely nothing, I didn't know what else to do from home.  Saline, mineral oil, glycerin enemas.  Enema through the tube.  Rectal enemas.  We maxed out on what we could give her without causing phosphorus poisoning.  She looked pregnant and her stomach was hard.  The gas though. . . this child was tooting like her life depended on it.  The house and classroom smelled like cabbage and dead decaying squirrels.  Believe it or not, this was a good thing because it means there was no obstruction.

So there we were hanging out in the ER for fun and the resident walks in.  I start to relay what all I have shoved into this kid's colon (which would have been the equivalent of a colonoscopy bowel prep for at least 4 adults) and I am getting the whole skeptical "so this is all rectal?" and "are you sure she hasn't gone to the bathroom with all of that?"  Gah!  What part of tube in her colon or cecostomy tube were they not getting?!  After explaining it all yet again, I finally hear:

"So what is a cecostomy tube?"

Now granted, this was a resident and she was still learning and cecostomies are not common so I went with the:  "So a cecostomy is when  the appendix is brought to the surface of the abdomen and it is used for high volume enemas to essentially flush out the colon ..... and here are some pictures. . . "  For tips on preventing your child from pulling out tubes (i.e. g-tube and/or cecostomy tube), click here.

An x-ray was ordered to rule out bowel obstruction. Because the x-ray tech was a male, Ellie wanted to show off her awesomeness and be-bops over to the exam table for her x-ray and poses like she is a fashion model.

Then nothing.  I hear nothing!  The attending never comes in.  The resident doesn't come back in.  However, the nurse comes in with another enema which we could have done at home and I ask her for the x-ray results which to summarize involved a large volume of solid stool (no kidding, Sherlock). Let us not forget the 1cm x 1.5 cm foreign body that left me sighing and saying "again?"!  Twinkletoes has a history of this - see here.  Of course, they are all, "she'll poop it out." except my kid wasn't emptying her bowel at all!  After painfully pushing out the equivalent of 2 small meatballs, we were discharged without ever seeing the attending or resident.

The following morning, I informed GI that I would no longer be administering the cyproheptadine to Ellie.  The ER visit was August 26th and it wasn't until Sept 9th that things finally became regular.  It should be noted that while it appeared that Ellie gained 2 lb while on the appetite stimulant, she has lost those two pounds.  I am taking a survey on how many ounces you believe was stool.  Also of note, I never did find that foreign body.


*While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.

Cecostomy Tubes R Us

Here we are - two posts in 30 days! It's scandalous, I tell you!  Seriously though, I bet you all thought that I abandoned ship and woul...