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We're out of the club

We are no longer in the GJ tube club. Normally with a statement like that, I would put an exclamation point but I don't feel like it. I still have very mixed feelings about this change, which has led me to the realization that I have become a cynic and/or pessimist when it comes to making changes with Raya. Why? Probably because she has a history of difficulty adjusting to ANY kind of change, especially big ones like where her food goes. NG tube=lost all desire to eat orally and really got the puke-fest going, G tube=turned a 24 hour hospital stay into a 5 day hospital stay because of increased vomiting & fever after surgery, started bleeding into stomach, started vomiting blood, kept vomiting blood for 2 months, etc. GJ tube=stopped vomiting blood but started vomiting bile, started requiring almost continuous drainage of stomach, retching replaced vomiting, etc. etc.
So yes, I am a cynic. I don't expect this transition to go smoothly. I will be putting towels around her bed (in addition to the one that's already there) tonight just in case she pukes in the morning. Even though the doctor said to try 60ml/hour (she was at 75/hour for J feeds), I might just knock it down to 50ml/hour for tonight just to play it a little bit safer. Optimistic? No. Realistic? Perhaps. I'm trying not to be negative about the whole thing but just going off of prior experience, I know better than to expect her to go back to G feeds cold turkey with no bumps in the road. And you know what? There is NOTHING wrong with that. Nothing wrong with me hoping for the best but expecting the worst, and nothing wrong with it if she does have trouble because we've been there before and we know we can handle whatever might happen. And she probably will be fine but it might take her a couple weeks to get there.
Today was exhausting for me. We spent 12 hours and 45 minutes yesterday driving from point A to point B, and Raya cried for about 2 hours of it. We got stopped for road construction about 60 miles south of Lake Powell and had to sit there for 40 minutes, so that was kind of the end of her patience. And we still had 7 hours left. :) She cried for a while then, and she cried for a solid 90 minutes after I put her back in her carseat in Flagstaff. During that time, we realized that we are pretty good at blocking out crying children. I guess after 4 of them, you get that way.
Anyway, yesterday was exhausting and today was the aftermath of 4 kids being stuck in a car all day and then getting home where it was 115 degrees and they couldn't go outside to play like they've been doing for the last 2 weeks. I couldn't WAIT for it to be time for Raya's doctor appointment so I could drop the other 3 off at their friends' house. :) I love them dearly, but today I just needed a break even if it did come in the form of a doctor appointment. :)
So here's how it went. Weight-wise, Raya's dropped a little. It was a slight concern to her doctor so she wants her back in 2 weeks for a weight check, which we probably would have done anyway just because of changing the type of tube. She's 32.5 inches tall and weighed 24 lbs 2 oz, and the doctor said that was 45 grams less than her last weight. That's less than 2 ounces, which doesn't sound like much, but it also means she's not gaining. I'm not really surprised that she's down a little because being away from home for 2 weeks was really stressful for her.
Ok, just to review, here's the last picture I took today of her GJ tube with the extension tubes hooked up to it:

Dr. S asked me if I was SURE that I wanted to do it today because there is a possibility that it will have to go back in and she really wanted me to understand that. She said, "If we change it today and she doesn't do well with it, you'll be stuck dealing with that over the weekend so if you want, we can wait and change it Monday." I told her I was ready to just get it over with. :)
Then it was on to the exciting part. Dr. S said she'd never taken out a GJ tube before (she's been practicing for 28 years) so she called radiology first just to make sure there were no special instructions. There weren't. It's simple. All you have to do is plug a syringe into the balloon port, suck the water out, and pull the tube out. It's really weird to see something like that pulled out of your child. :) It was equally weird to see the hole in her stomach without anything in it. Someday when she doesn't need a tube anymore, she'll have a scar that will look a lot like a misplaced second belly button. Then she just popped in the shiny new G tube. It's SO exciting to me to have that tiny little G tube button in there instead of that HUGE fat GJ button. Speaking of which, I saved it. Gross but very interesting. I will be keeping it for Raya to take to school for show & tell someday. She'll know more than her teacher about digestion anyway so she might as well have something interesting to talk about, right? :)
Here's a little lesson on the anatomy of a GJ tube.
It was a LOT bigger than I expected. The tube was about as long as I expected but the diameter of the J portion was a lot bigger than I had pictured. I also had a different picture in my head of how the G portion worked. I thought it was just one opening but there are actually 4 openings along the portion of the tube that's in the stomach. I think the black part along the J portion has to do with making the tube stiff enough to guide into the intestine and also makes it visible on the fluoroscope.
SO there you go. That's the exciting news around here. Hopefully there will be good news to share tomorrow after her first night of gastric feeds in 9.5 months. Eek. Fingers crossed.


  1. Wow. There's a lot I don't understand about this post but I wish you luck. I can't believe that long tube was in her body.

  2. Great minds....I read your facebook post before I read this (re: you can handle this). Again hoping it goes well. It may be weird to save the port, but you're in good (weird as well?) company. We have Henry's little itty bitty bp cuff from his NICU stay, and all of his casts from the foot correction, poop dried on the tops of them and all (cause they went all the way up his leg). What will we do with these things? I don't know. We drew on them, so maybe they'll be valued as art?


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