Tuesday, June 14, 2016

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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  1. I'm so sorry you didn't get more answers from all of these tests. I am thankful for all the good reports! (I will pray that she begins to sleep through the night. Oh my, I thought 6 AM was early!)

  2. Oh gosh, what a "pleasant" hospital time and three million tests and vials of blood plus even more appointments to add to your calendar! :-O Randomly, 1. I love that you packed a coffee pot, it's the little things, and 2. You made me feel better with the 3 a.m. wake-ups. My son begins the day between 4-5 so now I feel "grateful." (Is there a known reason for this??)

    Good luck, I hope you find answers and attainable solutions to go along with them!! - Nicole (Daniel's mom)

    1. Ugh! 4-5am is still super early! Our entire family has sleep issues so maybe it is from that. Maybe it is the ADHD. Or the central sleep apnea. I have no idea. Oh yes, I would not have survived without my own personal coffee pot!

  3. Totally recommend getting her her thyroid results on paper so you can see them the TSH should be at 2 or below
    Her symptoms (reflux and constipation) sound thyroid related or at the very least exacerbated by it. Check out Naturethroid or combination therapy)(T4, T3 therapy) this is what's now recommended for people with Ds

    1. I have a copy of her thyroid panel. It can definitely exacerbate her constipation and cause her failure to thrive as well. We redraw in 2 weeks and have an endocrinologist helping us. Thanks for your insight!

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