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Wednesday, October 22, 2014

Back to a G

This whole GJ thing just did NOT turn out like we had hoped it would. In the wee hours of the morning last Friday, I woke up to turn off Raya's pump and saw this:
A quick whiff confirmed my suspicions that there was formula in that bag, not just bile. (yep, I sniffed it. what else can you do.) I emailed the GI nurse at about 4:00 in the morning to let her know what was happening and ask what they wanted me to do and then went back to sleep. As I was getting Raya buckled into her car seat to go to school that morning, I saw this:
And that, my friends, is formula going into the J and coming right back out the G. That meant that her J was completely displaced and had coiled all the way back into her stomach. That explained why she had been feeling so crappy Thursday but it was a HUGE disappointment. When she had the GJ when she was younger, we went nearly 10 months without ever having a J dislodge, and now she's had 3 in less than a month. It is discouraging, especially knowing that the GJ gave her 2 really great weeks where she felt really good, slept well, and ate more orally.

The GI nurse called me back as I was walking out of school after dropping her off, and after discussing things, she said it would be best if we just took out the GJ and put in a regular G tube until we go to LA, and then reevaluate at that point to see where we should go. We both agreed that we don't want to put Raya through the anesthesia and radiation exposure of another tube placement, especially since she will be having anesthesia again and more radiation exposure in LA with the testing they're doing. Going back to a G tube is a bummer because it means slow feed rate and needing to be plugged in at school, but since the last GJ was causing SO much bile to back up into her stomach and need to be drained, so adding in the slower feed rate for feeling crappy plus the large volume of additional fluid to make up for the amount she was losing meant upwards of 20 hours a day on the pump. OPPOSITE of what we were going for with the GJ.

When I picked Raya up from school, I told her that Nurse Marie said we needed to take out her GJ tube since it was out of her intestine, and put in a regular G tube. (she's old enough now that I talk to her about it in pretty much the same way I would talk to another adult about it.) I told her we could do it right then or we could wait until the big kids got home from school if she would rather wait. We decided to just go ahead and do it, so I got everything ready. Then she stonewalled me.
It's kind of tough to change a tube like that. I did finally get her to turn around and lay down for me. One of the other reasons I wasn't totally sad about losing this GJ is that it was too small. They had put in a 1.5cm instead of a 1.7cm (miscommunication between the 2 tube changes) so even though I had let some of the water out, it was still putting too much pressure on her stoma and making it red and sore and goopy. One of my greatest tube feeding pet peeves is a goopy stoma. We normally keep gauze on it to keep any leakage from sticking to her skin since it's very irritating to skin, but this tube was tight enough that putting gauze around it made it even tighter. It's a little crusty and gross looking in these 2 pictures but you can see how the tube being too small has affected her stoma.It is red and irritated, and in the second picture, you can see a red spot near the balloon port that stayed red and irritated like that pretty much the whole time the tube was there.
I know it looks like she has granulation tissue but it's just scar tissue that's a little angry.

Raya wasn't too thrilled about having to change her tube but knowing that the alternative was having it changed at the hospital again, she held still and let me take the very long GJ tube out. I can't even imagine how weird that must feel to have 40 cm of tubing coiled up in your stomach.
She is such a goofball! Sooooooo it's out. And I lied, there may be a titch of granulation tissue in there, but only on the inner ring. The outer edges are scar tissue.
So now we have just a G tube again.
I had really hoped that the 3rd GJ would hold out until we go to LA in a couple weeks but it didn't. Boo. On the bright side, the 3rd GJ was also causing a lot of problems and making her feel crappy, so it's not entirely a bad thing that it's out. So far, G feeds are going okay. Just okay, not great but not terrible either. The worst part right now is that we are back to about 18 hours a day on the pump. Turning the pump on still makes her stomach hurt. Giving meds still makes her stomach hurt. Eating still makes her stomach hurt. She keeps asking for a Farrell bag since that was what we used to vent/drain her stomach with the GJ when she felt yucky, but we can't do that now since her formula and meds are all going in her stomach again.

Funny story about that Farrell bag. So I will be honest, I am not a very good housekeeper. My house is at my comfort level but is not magazine-worthy. Sometimes a drainage bag will sit on the counter for a day or two before it gets thrown out. (it sounds so much worse in writing) There was all kinds of chaos going on when I unplugged the Farrell bag from her stomach Friday morning (i.e. school/IEP drama, getting kids off to school, and being upset about another failed GJ tube) so I put the bag on the counter and kind of forgot about it. Saturday morning, I walked into the kitchen and saw this:
Turns out if there's formula in the Farrell bag WITH the bile, all kinds of crazy stuff goes on inside the bag and it ends up really puffy. It probably wouldn't have exploded but I felt like it was on the verge. I didn't want to just toss it in the garbage like that because I was afraid it would keep fermenting (or whatever it was doing) and end up popping, so I decided to very carefully let some of the air out. I held the tip over the sink drain and unclamped the clamps, and then squeezed the air out. I knew it would smell bad but it didn't smell like I expected it to. I was expecting more of a vomit smell but it was most definitely a really bad fart smell. So now we know that formula without bile smells like vomit, and formula with bile smells like a fart. Who needs science class. And that is my gross feeding tube-related story of the day.

1 comment:

  1. Are separate G and J tubes an option for Raya?


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