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:
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.
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.
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: