Hospitalization and Procedure Update

Last week Ellie had her 3 day hospital stay.  It took a while to get to that point.  There was a lot of organization on behalf of 2 GI specialists, Infectious Disease, and Pulmonary.   Cigna denied coverage for the bowel prep and colon manometry stating that it was "experimental" and that even if it was covered, they would not consider an overnight stay.  Right. . . the bowel prep was needed to clear the colon for the colonoscopy and then the manometry gets performed the following day to allow the bowel "wake up" from the anesthesia.  There were appeals on my end and the doctor's end and panic. Fortunately, we have a Medicaid Waiver for children with disabilities program called MDCP.  Not many of our kids with Ds qualify anymore, but Ellie does and surprisingly, Medicaid approved her procedures.  So clearly not experimental.  The thing is, even if it wasn't covered, we would have found a way to make it work.  She needed those tests.

Disclosure: I know that there are a lot of new parents of children with Down syndrome who read this blog.  I do not want you to think that what is going on with my daughter is the future for your child.  Ellie's issues are unique to Ellie.  They are not related to Down syndrome.

I made sure to pack all the important things for a hospital stay!

Ellie did totally awesome during her stay.  As in she was well behaved aside from trying to yank out her NG tube and she stayed in bed for the entire manometry study (6 hours!).  She did great with anesthesia and she SLEPT!  Now I think the first night was because she was up late, had versed, and then was up a lot in the middle of the night.  The next night might have been due to post-anesthesia, and fentanyl.  At home, she is still continuing to wake all of us at 3am.  (It was 2:30am before the hospitalization). She is, of course, up for the entire day.  Yes, awake from 3am - 7pm.  That is another post entirely

Top right: you can see how distended her tummy is from all the GoLytely

So. . . we still don't really have answers.

Bowel Prep:
This was to prepare her for the colonscopy the next day.  An entire gallon of GoLytely was run through and NG tube and was, in theory, supposed to clear all the crap out of her intestines.  I say "in theory", because it took way longer than anticipated.  So long that she wasn't fully cleared out in time for her surgery!  Dr. S called it "good enough" and opted not to post-pone the procedures.

Brain MRI with Contrast: Normal!
This was performed because Ellie had a new finding of central sleep apnea on her repeat sleep study from March.

Blood Work:
10 vials, my friends.  Then it still wasn't enough so another vial was drawn.  We looked at Thyroid levels, Ha1c, CBC, metabolic panel, inflammatory markers, celiac, and IgG/IgM/IgA gammaglobulins, etc.
Of the blood work that is back, all is normal except for a mildly elevated thyroid stimulating hormone [TSH].  After a brief in-hospital endocrine consult, it was recommended that we repeat her TSH and free T4 in 2 weeks at the pediatrician's office.  I just love adding more doctor's appointments to our schedule. Hypothyroidism is very common in Ds and it is often said a "not if, but when" they get hypothyroid so I am not overly concerned.

She wasn't able to eat during the bowel prep until after her surgeries so 32 hours without food.
The donut was awesome!

Upper Endoscopy aka EGD:
Back at the end of January, we did an upper endoscopy to definitively rule out celiac and lactose intolerance.  All came back normal, but her esophagus, stomach, and duodenum (upper part of small intestine) were inflamed.  We stared her on Protonix which is a proton pump inhibitor for ulcers and reflux.  Last week, we did a repeat EGD to see if the Protonix worked.  I am happy to report that the esophagus and duodenum look good and her gastritis is now mild.  The doctor also took 8 EIGHT biopsies of the duodenum as opposed to the usual 2 to double check the celiac screen.

Someone was pretty excited when she found out the bed could move.

Colonoscopy: Normal!  No need for any biopsies either

Colon Manometry:
This was the big test to determine how Ellie's colon functions - think contractions or peristalsis.  Is she missing nerve ganglion in the colon, delayed transit, etc.?  So. . . it was mostly normal.  No absence of nerve cells or other motility stuff.  She could not eat anything for over 8 hours before the test.  She showed normal colon contractions at the beginning.  Two hours in, we gave her food.  Her colon showed an appropriate response.  An hour later, they gave her laxatives.  Her colon did not respond, at all.  Not a real shocker.  There is no explanation for her severe constipation.

Colon Manometry or Colon Motility Study set-up

So now what?
It will be another week or so before we get the biopsy results.  It will be another week before we get the full Manometry results.  In 2 weeks, we repeat the thyroid panel.  We are doing high dose stimulant laxatives (as opposed to her osmotic ones) for 2 weeks on and 2 weeks off.  You cannot do stimulant laxatives every day because the gut gets dependent on them.  We follow up in 1 month.  If not a big improvement, we have to make some big decisions.

Severe constipation is a huge deal.  It has lead to Ellie's weight loss.  There is an increased risk for gut infection, intestinal perforation which can lead to sepsis.  It is causing Ellie's chronic urinary retention, which puts her at high risk for UTIs and even kidney damage.  This is Ellie's life.  It is getting worse, not better.  We have tried everything natural, medical, and everything in between. I was really hoping for more answers so that we would have a "fix" a good treatment plan.







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Stomach Issues, Surgery, and 21 Day Fix

As I am writing this, I am anxiously waiting for Ellie's gastroenterologist [GI doc] to call.  Last Monday, Ellie had an ABR and an anorectal manometry performed under anesthesia.  Essentially girlfriend had a fancy hearing test involving electrodes and a complex rectal exam involving a tube with a balloon up her bottom and some funky wave patterns.  As expected, everything was/is normal.  Except for a ton of internal hemorrhoids :-(

Yes, she wore those boots into the OR.
Yes, they let her bring her flashcards too.

I cannot remember if I told you all or not, but Ellie was hospitalized in April for . . . are you ready. . . constipation.  Yep, baby girl couldn't go.  For over 8 miserable days.  She was distended and unable to eat much.  She was spitting up.   Nothing we did for her was working.  While it may seem ridiculous to be hospitalized for lack of bowel movements, it is common among preschoolers and school age children.  It is also serious--severe constipation that is.  Severe constipation can lead to colitis (infection) and intestinal perforation (ruptured intestine).  Perforations can lead to severe infection &/or death.  So yeah, you can die from complications related to constipation.  

Did I mention that her surgery was running 3 hours late?!

Bear has had GI issues off and on since 3 months of age.   If one more person tells me about prune juice, I will blow a gasket (I kid you not when I tell you that as we were getting discharged from the hospital, the nurse asks me if we ever tried prune juice?!??!  It was a miracle I didn't smack her with the discharge paperwork).  If I hear about fiber and increased water intake, I will also lose it.  These were the methods we used to treat Ellie's constipation when she was a wee little baby/girl.  Every once in a while a glycerin suppository was needed.  Ellie was more of a happy spitter.  Reflux R Us.  At age 2, Ellie had an Upper GI that rule out celiac's disease which can also present at constipation.  Her thyroid is checked every 6 months as hypothyroidism is also common in Down syndrome and can cause constipation.

Over the years, things have gotten worse.  We had to start giving Miralax daily even with her ridiculous consumption of berries and grapes (honestly, I would never be able to leave the bathroom with the amount of fruit this child eats!). 

This year has been particularly rough.  Her Miralax doses go up and down, but she is never off of it.  The constipation gets better for a few days and then worse and then better and then worse.  Occasionally things get pretty bad like in April and like this week.  I am constantly told that she must be withholding (as in refusing to poop because it may hurt) but her rectal vault is empty.  This means there is no urge to go and so it sits and sits and sits higher up.

When things get really bad, one day may look like this: 

1-2 capfuls of Miralax (up from her usual 1/4-1/2 cap)

Exlax

Milk of Magnesia

Pedi Fleets Enema

This may produce nothing.  We do enemas in 3s--Friday, Saturday, Sunday.  Exlax can only be given twice a week, tops as it is a stimulant laxative and the gut can get dependent on them.  So guess what we tried to do this past weekend?  You guessed it!  Enemas.  Only the 2nd one wouldn't go in.  I don't know if I hit a hemorrhoid or what, but I would not force it. We skipped the 3rd and called GI.

What happens when she still doesn't go????  X-rays.  They look for an obstruction.  Usually the obstruction is stool, very high up in her gut.  

In April, she was refractory to treatment and we were sent to the ER to then be admitted for nasogastric tube administration of GoLytely.  All of you who have undergone bowel prep for colonoscopies know what I am talking about.  There is nothing like watching your child scream in pain as her abdomen becomes taught and swells to the size of pregnancy while that GoLytely tries to get absorbed.  Then, thankfully, 8-9 days of waste flow out and girlfriend is no longer uncomfortable.

After that hospital stay, it became apparent that Ellie's constipation is stubborn.  And severe.  The anorectal manometry was ordered to officially rule out Hirschsprung's disease., which is another issue that can be more common in Down syndrome.  Hirschsprung's is usually diagnosed at birth when the baby doesn't pass meconium (that first tarry bowel movement) due to missing nerve cells in part of the colon.  However, mild cases may not be diagnosed until late childhood.  The manometry looks at how the internal and external sphincters coordinate--imagine if one opens but the other closes.  It looks at how the rectum responds to pressures as the doctor inflates and deflates the little balloon on the tip of a tiny tub inserted in the bum.

Wave patterns.  Anorectal Manometry
Image: www.ajpgi.physiology.org

Picture of balloon catheter for Anorectal Manometry
Photo: www.mja.com.au

So here I sit at the computer, waiting as my daughter is going on day 8 of no bowel movement.  Waiting for the results of the X-ray and praying that soon my child will find relief.  Thankfully, Ellie is still eating okay and she doesn't seem uncomfortable.  I am hoping that we can find some way to manage her GI problems without constantly traumatizing her.

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A few weeks back, I wrote about my lifestyle modification that led to a fair amount of weight loss.  I have had many readers contact me to find out more.  I want to let you know that I am starting a 21 Day Fix Challenge in August through Beachbody.  This is the Challenge that changed my life and led me to become a beachbody coach.  If you are interested or know of someone who might be interested, message me through my FB page 

http://www.facebook.com/annatheurerfitness

or email me at thechroniclesofelliebelliebear (at) yahoo (dot) com

You can also learn more at 

http://www.beachbodycoach.com/annatheurer

I still can't believe I am posting before and after pictures!

Where to begin - manometry results and surgery

Oh where to begin.  I feel as though this blog has basically turned into medical updates for Ellie.  I apologize for that.  Please do not think there are no positives in our lives. There are!  How about I start with some of the fun, exciting things?

Ellie is trying to talk.  We don't always understand what she wants and if Drew doesn't get it he says "go ask mama".  If Ellie doesn't know the name of something, she says "ish" [this].  Usually she is pointing in the general direction and we have no idea just what "this" is.  The other day she said as clear as day "help please"!  She also has this flashcard with a clock on it.  Guess what she says?  Come on, guess?  Cock!  I shouldn't laugh, but well, it is funny.

Ellie is a big fan of bubble baths.  She constantly says, a clear as day,
"MORE BUBBLES"

Now that summer is underway, Ellie will be starting swim lessons.  We go to this amazing instructor. She teaches children who have special needs as well as their siblings in her backyard pool on a 1:1indiviaual basis.  Ellie made more progress in her first lesson last summer than in 6 weeks at group Y lessons.  She always wants to swim, but gets scared when the water goes above her waist.  I may have flashed a few people at a kids pool party when Bear clung to me like a spider monkey and pulled my suit down.  Whoops!  Not everyone wants to get a full show of my saggy boobs.

Horse therapy has been moved to earlier in the day to avoid the hottest time of the day.  Her beloved horse, Charlie, has been retired as he is considered "elderly" in equine terms.  She has been riding this sweet horse, Jake, and it has been going well. Jack has been taking a break this summer from therapy sessions which means Ellie is rather reluctant at first to get on the horse.

Here she is trying to make the horse go "fast fast fast"!

Playdates!  The nice thing about summer is the flexibility and free time.  We have been aiming for weekly playdates with Jack and his sister, Maggie.  You all know how much the Bear loves her "Hack".  This also means I get a much needed coffee gab session with their mama and my dear friend, Sheryl.

Onward to the medical stuff.  Bear with me her as I try to explain this in layman's terms.  Recall that 2 weeks ago was hospitalized for a series of tests.  One of which was a colon manometry, which looks at the motility (movement, peristalsis) of the colon.  Another was an upper GI which looks at the esophagus, stomach, and duodenum (upper portion of the small intestine).

Upper GI:
She continues to have esophageal gastritis, which is inflammation of the esophagus and stomach.  The biopsies revealed she is more inflamed that what was seen by the naked eye during the endoscopy.  She has been started on carafate (for ulcers) and will continue her protonix.  Here's the not so exciting part, the carafate's #1 side effect is. . . you guessed it! Constipation!  Yes, I am not kidding.  Consti-freaking-pation.  Because, you know, she needs more of that.

The biopsies again ruled out: celiac disease, lactose intolerance, and H. pylori.

Colon Manometry:
Basically test this looks at the colon contractions without food in the gut, after eating, and after stimulant laxative administration.  You can tell if it is nerve related or smooth muscle related.  Ellie's  manometry showed that she has low-amplitude decreased contractions.  Essentially, the smooth muscle of the colon wall doesn't not contract enough.  This means that her colon has trouble pushing stool forward and as such allows more water to be reabsorbed into the gut thus causing the stool to become harder.  Eventually, with chronic constipation, the colon stretches out which makes it even more difficult to push out stool.  Essentially, chronic constipation worsens constipation.

We learned that Ellie's colon has absolutely no response to the stimulant laxatives.  This is explains why all the medications she is on do not really help.  Before getting the official results of the manometry, we were to do a trial of high dose SennaLax (she was on a 1/2 dose before) to see if it would work.  It did not.  She was in so much pain on Tuesday and Wednesday due to being unable to go.  Crying, moaning, and clutching her stomach along with having a fever.  Perhaps a bit of colitis secondary to constipation?  It was the worst I had seen her in a long time and I was ready to take her to the ER when I couldn't get the enema fluid in at first.  I finally got the enema in and it helped, but we cannot keep violating her like that.

Anyway, when the doctor called with the results, we were referred directly to pediatric surgery.  Three surgical options were discussed, but both GI docs and Drew and I went with the one that would be most appropriate for our family.  (As in an ileostomy would not work because Drew wouldn't change it and Ellie would remove the bag getting liquid poop everywhere.  I'd be performing 24 hour surveillance.)

We are going with the Malone Procedure or ACE which stands for antegrade colonic enema. Antegrade means "above".  Enemas traditionally go through the rectum and only clear out the lower portion of the colon and do not affect higher up.  This doesn't truly treat the constipation.  By shooting an enema at the beginning of the colon, the colon can remain flushed and clear.  Plus, Ellie could come off all her laxatives and perhaps her urinary retention would be resolved. To do this, the appendix is brought to the surface of the abdomen and a button is placed (called an appendicostomy).  A saline enema is administered through the button It is scary, but we have learned that all the laxatives in the world, dietary measures, natural remedies, and behavior management are not alleviating the constipation.

Photo: www.nationwidechildrens.org

At this point, we have been referred to a different urologist to the one that we already see.  He is the one who will perform the surgery.  His medical assistant has been out all week and they are not sure if they can work her in.  Their first available appointment is in nearly 2 months.  Then who knows how long before surgery is booked.  I was really hoping to have this done before school starts, but it isn't looking that way.

A week ago, I had my surgery and it went well. The recovery period was only 3 days which I am relieved because I was told to allow up to 2 weeks.

So that's the big scoop.  Life is never dull in the Theurer household.



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A bunch of updates: Miss Sassy Pants, Sleep surprise, GI/Urology, etc.

Ha!  I am going to spare you my usual spiel of "I am so sorry that I neglected the blog and I won't do it again".  However, I will promise you that this post isn't entirely about medical stuff. . . sort of.

The Sleep Study Results:
Why does it take so long to get results?  Three weeks to get the results.  Actually, it was 2 weeks, but the doctor neglected to call me because he was flabbergasted and needed to do a more comparative analysis of her previous sleep study.  Yeah, "flabbergasted" is never something you want to hear from a doctor.

To see her previous sleep study results (as in pre-surgery), click here.  Ellie Bear's hypoventilation (very low rate of breathing) has resolved!  As a result, her inhaled CO2 levels are near normal.  Her oxygen saturations for the majority of the night ranged from 92-94% (compared to 80% in the previous sleep study.  In more exciting news, she now has central sleep apnea.  Girlfriend can never doing anything half-*ssed and likes to keep us all guessing.  So. . . where did the central sleep apnea come from?  We do not know, which is why we are going to do an MRI of her brain just for sh*ts & giggles. . . can you all tell that I am just sick of this stuff.  Why the MRI, you ask?  Central sleep apnea tends to originate from the brainstem (or in some cases the heart).  Essentially, your brainstem forgets to tell your to breath.

Speaking of sleep apnea, I have it and so does Andrew.  A few months ago, Drew woke me up because I "wasn't breathing".  My allergies were horrible and he basically shoved Afrin up my nose and it cured me.  Last month, I was in Vegas with some friends.  Vegas, baby!  The cigarette smoke also mucked up my breathing and my friend informed me that I was obstructing.  Because I don't have enough doctors appointments before school lets out in 2 weeks (I have 5 and Bear has 2), I now have an appt. with my PCP.  I am wondering if this is why the past 3 month I have been averaging about 3.5 hours of sleep?  Very restless sleep.

My Fitness Best Friends (and texting buddies):
Michelle (my Ds blogging buddy and first time meeting her!)
Lindsey (former Canadian, former Austinite)
Lisa (fellow Canadian Beachbody coach!)

Motivation Fitness Takes Vegas:
Oh yes, my friends, I went on a girl's trip to Vegas.  That would be a trip without the child.  As in alone.  I am still a beachbody coach running my health and fitness group called Motivation Fitness.  Our Facebook group is full of amazing ladies.  We not only share our victories and support each other during health-related struggles, we have become friends.  Many of us had never met.  Last month, 10 of us took a 4 day trip to the Sin City.  From Vancouver, Canada, Montana, Florida, New York, Texas, Missouri, and Ohio, all of us had a wonderful time.  While we managed to clock in an average of 24,000 steps a day and while we also were a health group, it was our main mission to eat (and to pee -we are all moms with weak bladders) in every hotel room along the strip.

School: The IEP meeting
Nothing screams "welcome back from vacation" like an IEP meeting the morning after your flight lands.  The IEP meeting went well.  We have good goals in place.  Ellie will spend a majority of her time in a Functional Academic spec ed classroom [FAC], with appropriate push-ins for specials, lunch, and home work and other classes as tolerate.  The "as tolerated" = behavior is good.  On a sad note, Ellie will not be at the same school as next year.  Currently, Ellie goes to a school that is 30 minutes away.  While that is not ideal, her teacher and aides were/are amazing.  Next year, her home school that is just down the street from our house is going to have an FAC room.  Fingers crossed that we have an excellent teacher and aides next year.  Change is difficult.  Being shuffled around from different schools, different classmates, and different teachers can be tough on Ellie.

The Dysfunctional Voiding Clinic: NPs vs MDs and Gastroenterology + Urology
I love joint appointments.  It is so nice to kill 2 specialists with 1 stone.  As a follow up, Ellie is now peeing more.  As in 3-5 times a day now, compared to once every 18-29 hours.  Unfortunately, she likes to do things the opposite of "normal".  When she poops regularly, she doesn't pee.  When she doesn't poop, she pees more.  Go figure.

The Bear has lost weight again.  Not much, but this child should be gaining.  Like a ton.  She is on an appetite stimulant and she eats all the freaking time.  At first I figured "different scale", but after having 4 doctors appointments in 10 days and all 4 scales showing a similar weight, it could no longer be ignored.

Play-Doh Fun!
You can see that she lost a big of weight in her face.  We have also gone down a size in clothes.

This brings me to the awesomeness of Nurse Practitioners.  No, I am totally not biased given that I am also a NP.  I have battled with Ellie GI doc for a few years now.  Always dragging his heels on trying to figure WHY she has severe constipation and WHY she loses weight.

GI NP: She has had a colonoscopy, right?

Me: Nope.  She needs one and will get one next month with her testing

GI NP: She has had stool studies, right?

Me: Nope.

GI NP: How about an upper GI?

Me: Yes!  Just a few months ago after begging the doc for one for 2 years.  We ruled out celiac, h. pylori, and lactose intolerance and discovered esophageal gastritis instead.

So, we did a bunch of stool studies to look for malabsorption.  Good news!  The studies were normal.  Bear's poop is normal.  Yay!

Disney On Ice:  
Two weekends ago, we took Ellie to Disney on Ice.  I wasn't sure how she was going to do during the 2 hours show.  She was so excited!  Before it even started, she was clapping and grinning.  Her enthusiasm was priceless and infectious.  She did great. . . provide Mickey Mouse was on the ice.  When he wasn't, Ellie was telling us "truck, buh bye, Noble Pig".

This all brings me to next month: Surgeries and Hospitalization:

It is always great fun to kick of summer break with a 3 day hospital stay.  Right?!  Okay, this is gross, but we will be admitting Ellie to the hospital for a bowel cleanse.  Think dropping and NG tube from her nose to stomach and pumping her with a full gallon or two of GoLytely.  The following day, Ellie will have a colonscopy and the placement of a colon manometry tube.  Essentially this tube will remain in her colon and be taped to her butt or thigh until the following day when we will hook it up to this manometry machine.  While she is under anesthesia, she will also have her brain MRI with contrast and her yearly routine blood work.  The following day, is the colon manometry which will look at pressures throughout the colon - identifying if there is delayed colon transit and if so, if there is a specific part of the colon where this occurs.  Then, home!

The following week, I get to have surgery.  For the past 2 years, I have been battling woman's health issues.  A variety of treatments have been tried with no relief.  More drastic measures will be taken and I will essentially lose my fertility.  No more kids for us, so if one more person asks if we will have more. . . I feel like I am way too young for this nonsense, but at 35 years-old, I am apparently of
"advanced maternal age" even though I have quite a few older friends who are currently pregnant.

Haircut:
I cut the Bear's hair myself.  We keep it short for a few reasons: 1. She chews her hair; 2. It sticks to her messy Nutella face; 3. Drew loves it short; and 4. It gets scraggly when it is longer.  The reason I am the one to cut her hair is because she hates it.  It is like medieval torture to her.  She does okay with the back, but the sides freak her out.  Perhaps the sound of the scissors? Or maybe having a sharp object near her face?  Sensory issues?  The thing is, if I take her somewhere, she is still a wild banshee child and no amount of fun toys, movies, little riding things help the matter.  I end up paying for the haircut that looks just like my hack job and I feel the need to tip a ridiculous amount because the Bear is a tornado.

Tama Boo:
In sad news, our beloved, black cat, Tama, has been missing for a week now.  She is usually indoors by 9pm and comes when called.  There were storms last Tuesday night and Tama is petrified of thunder.  I have called/ searched for her, all the neighbors in a 1/2 mile radius are looking for her, and I have posted her picture on Next-door.

So even though it sounds like there is a ton of chaos over in the Theurer household, we are staying afloat.  Bear's new favorite word are "oops" and "buh bye".  Any time someone drops something "oose!" [oops].  Any time we leave a room, a toy, or someone leaves a room, it is "buh bye" with great drama and a princess wave.

School is almost over and I am really looking forward to July.  When all this medical stuff is behind us and when I can sleep past 5:45am. . . and instead wake at 6:45am.






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GI Update: Colon Transit Study or Sitzmarker Study

After not hearing back on Monday, I had to hound the GI office to get a treatment plan.  Apparently Ellie's GI doc is on vacation and as such, her case is now being handled by the on-call doc.  The Dr. S, the on-call gastroenterologist, was the nice young man who performed Ellie's anorectal manometry.  We were called in for an emergency GI office visit on Tuesday.

Ellie after her GI visit on Tuesday.

By Tuesday, Ellie had not had a bowel movement in 9 days.  She had 4-8 x increase in her daily Miralax, Exlax x 2, Milk of Magnesia x 1, a glycerin suppository, 1 enema and 1 enema that I couldn't get into her.  This is along with her probiotics, juice, and a ridiculous berry consumption.

Ellie's X-ray showed normal bowel gas patterns which means gas was able to move through her intestinal tract.  Translation: no bowel obstruction!  There was moderate impaction from her ascending colon to the rectal-sigmoid colon.  Translation: moderate constipation throughout most of large intestine excluding the rectal vault.  Dr. S asked me if she went and didn't tell me since he expected to see much more stool on the Xray.  I incredulously looked at him and said "um, she is in a diaper so I am the one changing her and school gives me a daily report over the phone".  I was very thankful that she wasn't more backed than she was given how long it had been.

Bear is still up to her usual antics

There is a thought that Ellie's colon is moving very slowly.  This is called delayed transit.  Basically the stool does not move through the gut like the majority of the population's does.  As such, more and more water is reabsorbed into the intestine making the stool hard.  Hard stool = constipation and as such makes it much more difficult for Ellie to go.  The confusing part is why her rectum is consistently empty.  The doc has no explanation and is confounded.  I am finally being listened to!  Three different GIs have told me that she is stool withholding.  This is impossible.  The urge to go is felt in the rectum and if her rectum is empty. . . well you get the point.

To determine Ellie's gut motility, we are conducting a Sitzmarker Test aka Colon Transit Study.  This morning I force-fed 2 spoonfuls of yogurt containing 24 tiny radio-opaque rings that will show up on an X-ray.  On Monday, Ellie will have another abdominal X-ray.  They will count the number of rings in her colon and also look at the location of the rings.  Retaining 13 rings is considered within normal limits.  A repeat X-ray on Wednesday may also be necessary.

Right Colon	Left Colon	Rectosigmoid	Colon	TOTAL
4th Day	12	14	14	40
7th Day	0	0	2	2
Transit Time	12 hours	14 hours	16 hours	42 hours
Normal Value	11.3 hours	11.3 hours	12.4 hours		35 hours

This is for an adult--they take 3 capsules, not 1 like Ellie.

Photo: www.sitzmarker.com

On Tuesday evening, Ellie had a bit of diarrhea.  I guess the laxatives are finally working.  She had 3 more bouts through last night [Wednesday].  I am concerned that this will throw off the results of the transit study as diarrhea = increased motility.

Finally, Ellie is in the process of starving herself.  Last Monday 7/14, Ellie weighed in at 30.4 lb.  On Tuesday, she was down to 29.2 lb.  I am afraid to weigh her today.  On Tuesday, Ellie stopped drinking but was eating small amounts of food.  On Wednesday, she stopped eating but did drink.  After 40 hours of not eating, today she had a mini lunch at Quizno's.  She is also drinking.  She is not sleeping very well and as such is a little more wild and cranky.  I feel horrible for Ellie.  She must be positively uncomfortable.  I am really looking forward to getting some answers in the next week.

Desperate times call for desperate measures: Quizno's
Blowing y'all a kiss!!!  

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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Updates all around

*TMI alert: this post will have a bit of a poop discussion.  If you are squeamish about issues of the bowel, please skip that section.

Ellie's GI Update:

A few weeks ago, Ellie had a follow-up appointment with GI.  We discussed how small doses of Miralax cause explosive diarrhea, but she will then suddenly become extremely backed up.  Once she goes 2 days without a BM, she will become resistant to high doses of Miralax + Exlax.  There is no explanation for this.  In fact, 3 GI docs have no clue.  Bear is an enigma.

Currently, we have had a few weeks of very loose stools.  Some are so loose that they run down her leg into her shoes.  They go up the back of her pants and lower part of her shirt.  Several sets of pajamas and clothes have met their untimely demise.  As have 3 sets of boots. The bedroom carpet has been shampooed 5 times.  We now have very clean carpets and I am grateful that we own a carpet shampooer. FYI: Pet Enzyme Cleaner is awesome for human excrement as well.  I am petrified that this will happen at school for all the other kids to see.

Additionally, in one month, Ellie lost nearly 2 lb. The first pound happened in the week between her anorectal manometry and the last bought of constipation.  She was eating.  Then, she stopped for a few days.  For a few weeks after that, she was getting around 400 calories.  A 4 year-old should consume 1,400 calories/day.  Children with Down syndrome have slower metabolism by about 10% unless they are active.  Even still, Bear should have been getting closer to 1,000 calories/day.  She would ask for food and then it would sit there.  She would throw a brownie in the trash and ice cream in the sink! Within the next 3 weeks, Bear lost nearly another pound.

Ellie's GI doc was rather alarmed.  He reviewed her Upper GI from 3 years ago (back when she was Miss Spits-Up-A Lot) and saw that her small intestine had localized WBCs.  This could have been an early sign of celiacs.  Add in the alternating constipation and diarrhea plus the weight loss and there was a suspicious of celiacs disease.  Ellie has been screened in the past for celiacs as this is very common in people with Ds.  Her test was negative.  That being said, it is possible for there to be false negatives.  The true test is an upper GI with a small intestine biopsy.

The GI doc ordered 5 vials worth of blood work--most specific tests for celiacs, IgA stuff, tests that looks for inflammation, another thyroid and Vitamin D, and the usual CBC and metabolic panel.  All tests came back negative.  Chances are with the 2 celiac screens being negative, Ellie most likely does not have celiac disease.  In the meantime, we have been encouraged to feed this child anything, ice cream, desserts, anything with a heavy caloric content.  Of course this goes against the very foods  she willingly eats--berries.

Tragedy: the icing is touching the cake

Two dear friends of mine spoke with me extensively on the phone.  I am forever thankful for their support, prayers, and advice.  We hypothesized that the unstructured summer routine could have been affecting her eating habits.  As it turns out, they were right.  The day school started, Ellie ate some lunch!  Then she would have an afternoon snack and even dinner.  A later dinner, but a dinner nonetheless!  She is now getting close to 800-1,000 calories and so I hope that there will be some weight gain.  Some days are still rough, but I think the structure and peer pressure of classmates eating have triggered something.

My Back & Hamstring Update:

Five weeks ago, I fell and managed to severely strain several areas of my hamstring and obturator externus muscle.  After 2.5 weeks of crutches, I was cleared to walk very very short distances.  My pain was intense.  Both hamstring and back.  The hamstrings, quadriceps, core, and hip flexors help support the back.  By injuring the hamstring and groin muscle, I affected the stabilization of my back. Physical therapy was tough in that I could only do a few exercise because there was a concern that I would further damage my back.  I lost so much strength and mobility of my right leg.  I couldn't drive more than a few miles.  That slight pushing on the gas and brake pedals utilized my hamstring too much.

Left: hamstring & ischial tuberosity
Center: Obturator Externus msucle
Right: Sacroiliac

One week ago I saw my physical rehab doctor.  He told me it was time for a second opinion as my options are exhausted.  Not what I wanted to hear.  He also recommended a steroid shot in my sacroiliac joint [SI] and in the ischial tuberosity bursa [back of the upper thigh].  The shooting nerve pain that I experienced with both shots suggested that there were the inflamed areas causing my intense, debilitating pain.  Sure enough 3 days later, my hamstring pain significantly decreased and today my hamstring is pain -free.  I am able to walk further distances and this week I can start doing squats.  I never thought that I would be so excited about squats!  By the end of next week, I may be able to restart my PiYo workouts which really help my back.  My back still isn't great.   The mornings are okay, but the evenings are horrible.  I still can't drive more than a few miles but, Andrew has been a big help in taking Ellie to therapy and helping out around the house and my mom flew down from St. Louis to help out.

A week ago, I couldn't extend my leg at all.  Progress!

Being unable to workout has been very difficult.  It has been 5 weeks.  The PiYo was one of the main therapies that helped my back.  I have been trying so hard to maintain my healthy lifestyle.  Normally, at this point, I would have given up. Fallen off the wagon.  Returned to my stress-eating ways.  Fortunately, I stocked up on my chocolate shakeology and have been experimenting with various recipes to shake it up a bit (more on this in a future post).  It has prevented me from binging on donuts and ice cream since I have the chocolate flavor.  Amazingly, I have lost an additional 3 pounds in the last 5 weeks and I attribute this to the healthy eating and Shakeology.

I need to get back to this!

As my friend Mary always says "Forward With Hope!"