Monday morning Ellie had another round of residual fluid in her stomach. About 4 hours worth of Pedialyte was still there when she woke up which told us that, although she had some success with her feeding experiment on Saturday night and Sunday, things are definitely not better. The problem was not solved by bowel rest nor was it a case of her bowel being slow to ‘wake up’ after her endoscopy.
Something is still causing trouble.
We stopped the pump and made her NPO again while we waited, worried, imagined what it could be. Allergies? Irritation? Inflammation? Dead bowel? Some mystery ailment?
We also got in touch with Dr. Jennings. His advice was to wait until the Upper GI (UGI) study that was scheduled for Tuesday afternoon and see what it shows us.
Today we took Ellie in for her UGI to see her favorite radiology tech named Jackie who is just wonderful with Ellie. As always, it was freezing and we forgot out sweatshirts. Again.
That makes three UGIs this summer and four contrast studies since June. Yes, her Geiger counter is probably humming these days. But what is the option?
We were advised to bite the bullet and use the chalky barium since it provides a better view of her bowel despite its horrible after effects that virtually clog her plumbing until it passes. The images were remarkably more clear than the UGI from a week and half ago.
The images showed us bowels in significantly worse shape than what we saw last week.
The first thing we saw is that her small bowel is quite dilated. Again.
With a load of barium passing through, it looked alarmingly similar to her bowel pre-ostomy (November, 2006!). When the bowel was fully loaded with contrast it looked like we were looking at two stomachs.
Oh shit. Not again.
F#%^! F#%^! Double F$%#! What word can I say that is worse than F#%^?
As you might expect, this caused some serious Oh Shit! looks between Abby and I in the radiology suite.
Once we convinced the radiologists that dilated bowel was not "normal" for this short gut kid, the radiologists did their thing, manipulated her belly and saw something peculiar. A possible cause of the dilation is a distinct narrowing in her bowel that is slowing things down as the barium worked its way through. They just followed the dilated bowel down until they found normal bowel and then investigated more.
Dam. Literally.
This, believe it or not, even though it will likely lead to another surgery.... Was welcome news for us. Fixing a medical problem like an allergy or nerve problem can be very difficult to treat if treatment is available at all.
An anatomical problem can be fixed. We hope.
Dr. Jennings is back tomorrow and we hope to get in touch with him and pencil in the next chapter as soon as possible to, as the ad says, Get in. Get out. Get on with things.
Pre-school starts September 8 and Ellie is raring to go and play princesses with he other kids.
Oh yeah. We lost our digital camera during our stay at Children's last week. Sorry for the lack of pics. We promise she is still just a cute and happy as before.
2 comments:
Glad you guys finally got some clairity!!! Hope all goes well. We will be praying for ya!!! Nikki & Zak
Glad you found your answer finally! Sorry it means another long wait on the 3rd floor... hopefully this time things will be "fixed", or fixed as they get for our kids :) :) :)
Jessica
www.fromthebanksofjordan.blogspot.com
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