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Setback.

I knew that a tube change was inevitable but I was dreading it. Why? Because the placement of a GJ tube seems to be a tricky thing. When she got her first one back in October, she immediately started having huge amounts of bile in her stomach that we had to drain out through her G tube. Then when we went to Ohio in December, they had to take out her GJ tube for testing and then put in a new one. For whatever reason, after they changed her tube, the drainage went WAY down and has continued to decline to the point where recently, we've only had to drain her stomach during pump feeds (mostly at night) and rarely at other times when she seems to have an upset stomach. Instead of yellow or green bile, she has been draining almost clear fluid. Until today.
So this morning, I woke up to the dreadful sound of her filling her diaper with liquid diarrhea (sorry, TMI) which her GI doctor suspects may be a by-product of the contrast dye they used when they placed the GJ tube. Ok, we'll wait that out & hopefully it will go away. When I picked her up to get her out of bed & clean up that mess, my heart sank a little when I saw that the G tube drainage bag was almost completely full of bright yellow bile.

100ml of yellow bile. I don't feel like using the energy to look through my notebooks and see when the last time she had that much drainage was but it's been at least 2 or 3 months, maybe more. (As a side note, I've decided that the radiologist from Ohio needs to come to Phoenix to teach our radiologist how to place GJ tubes and the IV team from Phoenix needs to go to Ohio to teach their IV team how to place IVs in kids who are difficult to stick. Just a thought. :)
I emptied the bag and put it back on, and 3 hours later she had another 55ml. It's not the end of the world that she's suddenly having all this drainage, but right now I feel like I've been plunged back into October or November minus the vomiting (knock on wood). The real down side to this is that as long as she's in need of having her stomach drained, I can't put any formula (or anything else) in it so this may set us back on transitioning back to gastric feeds. That means that at least for today, her nice vacation from having to wear her backpack all day is over because now she'll need another 250ml through the J tube, plus extra fluids to replace what she's losing through her stomach (about 6 hours' worth). Bummer.
Well, I guess the lesson here is that you should enjoy the breaks when you get them because you never know when things will change. Things will be fine and we'll survive, it's just disappointing. Now I'm even more thankful for the lady that stopped me in the lobby of the hospital yesterday and out of the blue started telling me about how her son didn't eat until he was 5 years old. She told me not to stress over it because it will get better and she will eventually eat. Her son is 12 now and was sipping a slurpee and nodding in agreement. I appreciated it yesterday but on a disappointing morning like this, I appreciate it even more.

Comments

  1. This may be ancient history to you, but this is exactly what happened to us today. Thanks for posting!! I haven't seen this much bile is a very long time, it always feels like another set back, but I guess it will pass.

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