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An unfortunate anatomical roadblock

Nothing ever goes as planned with this child. My understanding of today's events was that we'd do an endoscopy, remove the old tube, take her to radiology while she was still asleep and put in the GJ tube. Didn't happen that way though. I knew we'd be there longer than expected when I mentioned the words "G tube change and GJ tube placement" to the nurse in pre-op and she looked at me and said, "Oh, that's not on the schedule." Fortunately, Raya was happy most of the time we were in pre-op:

Her new little lamb that they gave her in pre-op
Last picture of Mr. Bard :)

Making silly faces
More silly faces

Looking for dust bunnies under the chairs

Long story short, radiology had no idea we were supposed to be doing the GJ tube and GI pre-op had no idea we were changing the G tube. Because of the confusion with radiology, we were half an hour late starting the endoscopy.
The endoscopy went well. Turns out there's not a tear in her esophagus or an ulcer. Remember how gross her granulation tissue looked on the outside? Well imagine that x10 & that's what the inside looked like. Because the Bard button she had was too big, there was a lot of friction between the tube & the stoma (the hole in her stomach) and that's what caused the granulation tissue. Granulation tissue is delicate and bleeds easily so that's where the blood was coming from. Mystery solved.

While the GI doctor was doing the endoscopy, she was kind enough to remove the Bard button by cutting it on the outside of Raya's stomach and then pulling the bumper out through her mouth. MUCH gentler & easier on Raya than the yank-it-out method that the surgeon was going to use. Once they finished that, they put in a Foley catheter to keep the hole open and then took her to recovery to wait for a turn in radiology:
Yep, another gross picture of my kid's stomach wound. This is the catheter keeping the stoma open until the GJ tube placement.

When she woke up, she was like this:

Then she was like this:

Then she was like this:

Then she was like this again:
You get the point. That's pretty much how she was for the 2 hours between her endoscopy and when IR (Interventional Radiology) could get us in for the GJ placement.
Here's the bummer. The radiologist came out about 20 minutes after they started on her and told me that it was "anatomically impossible" to get the GJ tube in. The way I understand it, the location of her G tube made it so that there was no way they could get the guide catheter through her pyloric sphincter and into her small intestine. BUMMER! They put a new G tube in (not the kind I had planned on getting but oh well) and told us that the GI doctor will call us tomorrow and discuss what to do next. They pretty much said that if we still need to go ahead with the GJ tube, it will require another surgery to reposition the G tube. UGH. After I hooked up her feeding pump, we finally left. I'm glad that all of our appointments don't last 6.5 hours.
But to recap the good news, the old leaky tube that didn't fit is out and there's no tears in her esophagus or ulcers in her stomach and we are very grateful for both of those things. The end.

Comments

  1. poor baby girl! I hope everything goes well when GI doctor calls you. We just went to see a GI specialist for Taylor because she's had diarrhea for 8 months.

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