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.*

WHEN THE TUBE IS TOO LARGE 

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.

WHEN THE TUBE IS TOO SMALL 

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:

The pre-surgery debacle and ridiculousness

Surgery - Cecostomy

Cecostomy Post-op Complications

The missing cecostomy tube 

Tips on how to prevent your child from pulling out their g-tube or cecostomy tube.

Colon Manometry 

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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.

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.

Cecostomy

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.

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*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.

The Missing Cecostomy Tube

Oh Ellie Ellie Ellie.  Life is never boring in the Theurer household.  It is always something and that something can usually be traced back to the Bear.

This past Sunday, Ellie decided to remove her cecostomy tube.  She went in her room for one minute and walked out into the kitchen completely naked, minus the tube.  I about died.  This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.

The thing is, we couldn't find the tube.  I mean she had to have just removed it.  Right?! Maybe.  Did she remove it earlier and we just didn't notice?  We checked her clothes, all the rooms of the house, drawers, the trash can and nothing.  How did it disappear? Also, how she get this tube out without any pain is beyond me.

My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs.  I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.

It wasn't a bad experience.  For mild "emergencies" you can schedule an appointment.  Yes, an appointment at an ER.  They took us right away.  The doctors saw us right away.  They placed the tube right away.  The X-ray confirmation occurred quickly.  Then we waited another 3 hours.

Sorry for the gross picture.  This is when she had the infection.
Anyway, this is what the tube looks like outside the abdomen.

The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule.  The ER docs decided they wanted her on the schedule before we left the ER.  At first they thought they could do it that day through fluoroscopy.  Then they realized that they were not sure they had the correct size tube.  Then they worked on getting us on to day's surgery for Monday.  They got it all worked out.

Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size.  Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out.  The tubes are always in stock according to IR.

I don't know why she was so excited.

Day surgery went well.  We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages.  The IR nurse gave us an abdominal binder to also cover the tube.  I cut it down to size and it goes from her lower ribs to her hips.  Ellie does not seem to mind this.

I am anxious and paranoid.  How are we going to keep this thing in?!  My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button.  The enemas would go through the catheter.  There is no button, no equipment.  I will be squeamish.

As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning.  Yuck!






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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!].

Abdominal Binder by Trademark Supplies

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. 

4 x 4 non-woven 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!

   

Surgery Update

Surgery is in a little more than a week!  Finally! Earlier this month, I had a consult with both the nurse and Dr. B from Interventional Radiology [IR].  It all went well and several of my questions were answered.  The biggest one involving the "state of her colon" where if her colon is not in the right state, the surgery is postponed or even canceled.  The doctor does want her completely cleared out.  As in no stool in the gut.  However, there can still be liquid in the colon and this is dangerous.  Air is pumped into the cecum (upper colon) during the procedure and if there is fluid, perforation of the gut is likely.  So it is important for the colon to "dry out".  Upon clearing out the colon, Ellie can only be on a clear liquid diet until after the surgery.  This is to prevent the formation of stool which would defeat the purpose of the bowel prep.  Fortunately, from past experience, I know that we can get Ellie cleaned out.  I am not looking forward to the clear diet part.  How to you reason with a developmentally delayed child that she can only have water, juice, broth, and jello?

Of course things couldn't be easy scheduling-wise.  After all, nothing has been easy about this journey so far.  A journey that started nearly 6 months ago.  Gastroenterology is in charge of the bowel prep.  Interventional Radiology is in charge of the cecostomy procedure.  GI wants to admit her on Friday for an overnight hospital stay to administer a gallon (at least) of GoLytely through an NG tube (a tube that goes from the nose to the stomach).  Surgery would commence on Monday.  However, the GI doc is out of town on Friday.  We didn't know this until after the office visit was scheduled.  It does look like we can have the visit on Thursday afternoon and still be able to admit her on Friday as planned.

Surgery is/was scheduled for Monday 12/5.  I get a call earlier this week.  Dr B is not going to be in on Monday.  Surgery is moved to Tuesday 12/6.  To say that I am annoyed is an understatement.  I know that pushing it back one day doesn't seem like a huge inconvenience, but that is one more day that we have to starve Ellie.  No food from Friday - Tuesday post-surgery. We are starving a child who has failure to thrive.  Where each pound gained has been an ongoing battle and now we deprive her of food for over 4 days! I am trying to negotiate with IR and GI, but with the Thanksgiving Holiday I am still waiting.  My hope is that they will let her eat Friday.   Or that the GoLytely will make her feel full on Friday and Saturday.

Eight to 10 days later Ellie will have a post-op appointment with GI.  After this visit, we should be able to start the antegrade enemas.  Basically, we administer a ridiculous amount of either water, salt water, or ducolax crushed into water through the cecostomy tube.  This allows us to clear out Ellie's colon from the top rather than going rectally.  Six to 8 weeks post-op, Ellie goes into day surgery for the placement of a permanent catheter called Chiat Trapdoor.  After that, we should be good for 11 months which is when the catheter will need to be replaced.

I am nervous.  Nervous about her pulling it out.  This must be a common thing because at the consult, the first thing the IR nurse talked about is what to do if the catheter is pulled out (you insert a feeding tube into the stoma and then call IR for tube replacement the next day).  I am nervous about the dressing changes.  She is going to be so sore and I know she won't want us fiddling with it.  My thought is that it will take both Andrew and me to perform the dressing change.  Drew can hold her down because he might gag when he sees the cecostomy.

I am hoping that the next time I update y'all Ellie would have had her surgery.  Please pray or send positive vibes that her surgery does not get delayed. . . again.  That her bowel prep goes okay and her colon is in the "right state" so that surgery can proceed as planned.





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Interventional Radiology Update

If you are new here, you might want to read this blog post first so that it all makes sense.

Radiology wasn't doing such a great job at calling me back so I took it upon myself to call GI. Of course, I wasn't sure that GI could do anything since Ellie's case was no longer under their jurisdiction.  I didn't contact the nurse of Dr. S, the ordering physician, but rather called our primary GI's nurse, K.  Out of all the specialists we see, K from GI is the only one who ever calls back in a timely manner and she knows her stuff.  If anyone could light a fire under radiology's patoocus, it would be K.  Everyone needs a K in their corner.

"hi everyone!"

K called me not even two hours after I left a message.  She spoke to radiology who informed her that they were doing a massive schedule rehaul.  Translation: moving around already scheduled patients so that all their surgery dates will be pushed back, which means they are booking ever farther out.  Anyway, my point is that radiology stated that she would call me the next day and she did.

She just had to take her Nutella sandwich to the bus stop.

Two Friday's ago, I spent 20 minutes on the phone with the Interventional Radiologist's [IR] nurse, C.  In the middle of HEB. Our local grocery store.  In the dairy department to be exact.  It should be noted that I forgot to pick up half the items on the list after speaking with her. Like the ingredients for what I planned to make for dinner that night.  We ended up eating out. Back to the topic at hand, C spent a great deal of time explaining to me how this is all going to go down.  I am not amused.

Someone was very excited to go back to dance class.

First, Ellie will come into the hospital on a Thursday for a contrast enema.  This is supposed to clear her out (yeah right) and allow them to see the exact location of her cecum, the upper part of the large intestine.  Now, I am not real clear on this, but her colon is supposed to be in a certain state for the procedure.  Fully cleaned out?  Partially empty with stool of a certain consistency? I don't know, but let's for full clean out because I know we can accomplish that.  I carefully explained that my child's colon is uncooperative and will probably need a 23 hour hospital stay involving GoLytely through an NG tube.  Apparently, I have to contact Dr. S in GI, our secondary GI doc, to "discuss".  It's like musical specialist phone calls over here.

From Friday - Sunday, Ellie can only have clear liquids.  No solids.  No food.  For 3 days!  How am I to explain to a child who is developmentally 3-4 year-old that she needs to starve for an upcoming procedure?!?!?  They are nuts!  Seriously, unrealistically nuts.  It is like child food torture.  Andrew and I have a big plan - remove all food from the house. Every. single. last. morsel.  All 3 of us will survive off juice and water and jello, but us parents will get take out after Ellie's in bed.  Seriously, whose brilliant idea was this?!  Why not do the clean out from Saturday - Sunday before surgery???

Yes, she took these medical glove balloons to school.  No, they did not return home.

Monday, Ellie will be admitted to the hospital where she will have an abdominal X-ray to inspect the state of her colon.  If everything looks good, she will go over to IR and have her cecostomy with a temporary device (button/tube) placed.  Again, I am not sure if she needs to be fully cleaned out of not because nurse C said that if she is too liquidy, the surgery would be moved to Tuesday.  If on Tuesday she is still liquidity, the procedure will be canceled.  Let's all cross our fingers, pray, send positive vibes, and happy thoughts that this does not happen.  Repeat after me: "Ellie's colon needs to be in a awesome state" or mom will throw a huge conniption fit in the hallways of the children's hospital and will be escorted out by security for her ranting and raving.

Photo: www.nationwisechildrens.org

After the procedure in IR, she will remain in the hospital for a week.  If she does well, she could be released on Wednesday or Thursday.  Take a wild guess as to what I am hoping for.  How will I keep this hyperactive child occupied for an entire week.  An entire week spent in one room.  I'll be climbing the walls with Ellie and start talking to myself.  Oh wait, I already talk to myself.

Now onto scheduling. Because the procedure is on a Monday, we need a Monday opening in the schedule. It also needs to be on a week where the doctor is around for the entire week.  This really limits when we will get scheduled.  As it stands, we are booked for December 5th.  Now for the kicker.  There was a surgical date available for 11/7.  Yes, the beginning of November.  I was thrilled until I learned that you need to have a consult before the surgery.  The earliest consult date was for 11/8.  The freaking day after the surgery.  ARE YOU KIDDING ME?!?!?  It would be nice if the radiologist would, oh I don't know, work her into the consulting schedule.  You know maybe do a 30 minute over book or something.  The nurse is going to talk to the radiologist, but she warned me that it is highly unlikely.  That was over a week ago.  I put a call in to touch base and as usual, I am still waiting.

I am frustrated, but doing okay.  I am peeved that she will now have the procedure 6-7 months after she was first referred for a cecostomy.  I was angry on 9/12 when she was supposed to be in the OR.  Yet, I can't do much other than complain and moan about the unfairness of it.  I can't make a surgery date magically open up.  So now we wait and continue to poorly manage Ellie's constipation the way we have been these past several months.  She has been dealing with the constipation for nearly 3 years and yes, it has gotten progressively worse, but we can make it another couple of months.  I am paranoid and anxious that her colon will not be in the right "state" that Monday or Tuesday and it will be canceled - having to start all over again.  I am trying to get into a sense of calm.  To stop freaking out and thinking about the cecostomy nearly every waking moment.  I need to get a handle on it because I've got another 3-4 months to survive.

In the meantime, I am off to go constitute a special enema in my kitchen in hopes of "uncorking" Ellie's gut.




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The Pre-Surgery Debacle and Ridiculousness

The Pre-Surgery Debacle

Friday 12/2:

This is the big day!  The day for bowel prep.  A day where we administer a gallon of GoLytely through a NG tube in hopes of clearing out Ellie’s colon in preparation for Tuesday’s cecostomy.  Or so I thought.  Friday morning we show up to patient administration for hospital admission.  We had seen Dr. R in GI the afternoon before and we should have been good to go. Only to discover that Dr. R never put in the orders for admission.  Dr. R is, of course, now out of town.

After much calling around, one of the GI nurses was going to put in the orders.  So we waited.  And waited.  Said nurse went into a meeting first and then got around to putting in the orders.  We waited some more. They neglected to call the unit to get a bed.  More phone calls.   They get a hold of Dr. S who is actually the doctor who performed Ellie’s colon manometry and recommended the cecostomy tube placement.  Apparently, she doesn’t need to be admitted on Friday.  Saturday is good enough.  So after pulling Ellie out of school and wasting an entire morning, Ellie and I head back home.

Saturday 12/3:

Ellie gets admitted!  For real this time.  I was apprehensive when we showed up, but it all went smoothly. We get the NG tube into her.  She doesn’t fight us much.  We watch Mickey Mouse’s Choo Choo Express 12 times while coloring in a Color Wonder book for hours.

Plus, she starts to poop in the late evening!  Yes, of all the things to get excited over.  Pooping.  A bowel prep is loads of nastiness fun.  The goal is to be literally pooping water.  As in clear fluid.  That is why we need Monday to be a day of “drying out” so to speak.  As I am helping the nurse change her sheets for the 3rd time, I discover a few interesting orders in Ellie’s patient chart.

Jello. Popsicles.  Broth.  Water.  Juice.  All of those are considered a part of a clear liquid diet.  Ellie was to start a clear diet as soon as the bowel prep started and continue until Tuesday.  However, some genius resident decided to change that order to nothing by mouth, NPO, as in she can’t even drink until after her procedure.  I had the nurse pass along to that resident that  I will be not following that order.  I am not a big fan of detrimental health effects related to dehydration.  Plus, what is the point?  She is getting GoLytely pumped into her stomach.  The whole idea behind NPO is to keep the stomach empty.  Score 1 for mom because she changed the order back to Clears.

The whole plan, to my understanding, is that we would go in for a bowel prep Saturday - Sunday and then get discharged Sunday afternoon.  Tuesday morning we would report to radiology.  Apparently, according to the orders in Ellie’s chart, we would not be going home until after her surgery.  We would get to hang out in the hospital just for fun for Sunday and Monday night even though Ellie had no medical need to be there.   There was a theory that this decisions was related to insurance. That if they discharged between the bowel prep and the colon surgery, insurance wouldn’t cover the bowel prep.  

The resident called the case worker.  She couldn’t help.  She called financial services.  They never called back or weren’t even in the office with it being a weekend.  I call Cigna.  I explain the situation and Cigna informed me that there is no reason why we couldn’t be discharged to home and return Tuesday.  I had her check with her supervisor who confirmed.  I also have a nice reference number and a note in Ellie’s Cigna account too to cover all my bases. 

The on-call GI doctor finally stops by the hospital room as we are watching Mickey Mouse’s Choo Choo Express for the 21st time (I am not exaggerating) and playing with sight word flashcards.  Apparently, she thought we were staying through the procedure because of 1. Insurance and 2. Because Dr. S said we might as well just stay.  Um, right.  The on-call GI doc calls Dr. R who is out of town who says “oh yeah, she can go home”.   

Finally!  Discharged to home on a clear liquid diet until Tuesday.

Tuesday: 

Surgery day. . . or not.  We presented to radiology at 7 am today for an abdominal x-ray.  This is to look at the state of her colon.  Is there too much fluid in there? Too liquidy?  That answer to that question is, yes, she is too liquidy.  So surgery has been postponed to tomorrow provider her colon is in the right state tomorrow morning. 

I nearly cried when I heard.  We have been waiting 6 months for this surgery and it is delayed again.  I am anxious that we will show up tomorrow and hear the same old story.  That her colon isn’t in the right state to proceed.  This entire process has been ridiculous!  At this point, it would have been much easier to have done it back in September laparoscopically.

Please pray, thinking positive thoughts, or send positive vibes that all goes well tomorrow.  That her colon is okay and that we can proceed with the procedure.

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Surgery - cecostomy

Well it finally happened!  Today Ellie had her cecostomy.  She will be in the hospital for the next 3 to 4 days.  The surgery went well with no complications.  She is in pain which is being managed with pain medication, but as soon as it wears off, she becomes quite combative.  Here's to hoping that this post-operative period goes smoothly with no complications.

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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.




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Weight Gain, Cecostomy, and Constipation

The Chunky Chicken is back!  Ellie's ADHD has been out of control.  She won't sit in her chair, is shoving things off kids' desks at school, and tearing pictures off the walls.  At home, she gets distracted putting on her shoes.  One shoe half on and "oh my goodness, I must go over there!".  She does great in the mornings, but in the afternoon, it is as though we never gave her the afternoon adderall.  Unfortunately, she has maxed out of the Adderall dosage-wise.  As in we cannot go up on the dose.  So we started a new, non stimulant medication.  The main side effects are fatigue (She is going to be at 6:30pm now!) and weight gain.  The weight gain is excessive.  She is gaining 1 lb a week and eating nonstop.  Sadly, the GI doc warned us that if she gains too much more, she may need to go on a diet.  Honestly, I think that she has already gained too much weight.  Yes, she had failure to thrive and needed to gain weight, but this is excessive and piling on too quickly.  It is unfortunate, because I feel like this new medication is working.  Yet, I have to weigh things - ADHD out of control or weight gain with the associate diabetes and high cholesterol.

In other news, where I last left off, Ellie hadn't had a bowel movement in 19 days.  GI wasn't coming up with a good solution or taking me seriously.  Well, after 21 days, they had us come in for an office visit.  The new plan was to give a SMOG enema through the cecostomy tube.  Usually, we put in normal saline.  A SMOG enema is saline, mineral oil, and glycerin.  These are the types of enemas we used to give Ellie rectally.  That night, I was supposed to give 180 mL of a SMOG enema followed by 180 mL of saline.  Well, I only got in 30 mL of the SMOG enema before the tube clogged.  Did all the oil and glycerin clog the tube or was there a big ole piece of stool blocking the tube?  I waited a while and was able to get some saline in.  I called GI in full on panic mode and asked if I could mix the 180 mL of saline with the 180 mL of the SMOG enema to make it less viscous and it worked!  I was able to get all of it in and we got results!

The following day Ellie had her Chait Trapdoor placed.  This is the permanent button in her colon.  It was a quick day surgery and she recovered nicely.  They used guided x-rays to place the Chait Trapdoor and we discovered that after 22 days, her colon was cleaned out!  The post-op nurse spent a great deal of time going over what to do if the button comes out.  Apparently, this is a common thing.  Yet, if you see what the Chait Trapdoor looks like, you'd think it would hurt if pulled on.

Chait Trapdoor

Adapter

We are now doing every other day saline enemas and they seem to be working (I don't want to jinx this so I am knocking on wood right now).  Even though it has been nearly 2 weeks since the button was place, Ellie is still having a lot of pain when I open/shut the trapdoor and when I attach the adapter device.  I called Radiology to see if this amount of pain is normal this far out, but of course I never heard back.

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