On Monday, I got a call from Jackson's school nurse saying that his tube had come out...balloon intact. She can not reinsert it because it is a GJ tube and can only be placed in interventional radiology. So she taped it in to hold the stoma open.
We have a spare G button that we keep on hand for emergencies that I was able to insert until we were able to get a new GJ placed. Luckily, Jackson was already scheduled for a GI appointment yesterday. The GI nurse was able to schedule a tube placement in IR with no problems.
He actually did better than I expected with the G-tube, he gagged a few time, but no vomiting. And I have never placed a G-tube before, so let's give Mom a big round of applause.
The appointment went ok. The plan is to put him back on the baclofen, at the same dose that was not helping anything before. (Not sure what the issue is with raising the dose, it is a miniscule amount for a kid his weight.) He ordered some labs (to make sure he was not getting dehydrated with all the bile he has been putting out) and a small bowel follow through (to rule out an obstruction) for after his tube change since he would be in radiology anyway.
Also, we saw the nutritionist. She feels that Jackson is not getting enough fluid daily, especially with the physiatrist cutting his feeds and with the bile output. So he will be getting about 500 ml more fluid than he had been and also a 1/2 a vitamin ground up in his tube every day. His formula is a complete formula (meaning it contains all necessary vitamins and minerals) but since his calorie needs are so low he is not getting enough to make it complete.
Radiology was all backed up, we got in about an hour after we were scheduled. The tube change went well. We had to push so much contrast for the SBFT that Jackson was really uncomfortable and kept gagging. I am assuming it was normal because they did not tell us otherwise, and things like that always come back normal for Jackson.
The trip home was hell. It was pouring buckets of rain, and got to Chicago just in time for the evening rush. It should have been 90 minutes, but it took us over 3 hours to get home!
