Feeding Tube Tribulations, Part 2

Continued from this post...

Everything went pretty smoothly that Friday night. Saturday morning we noticed that it was much more awkward to connect her extension tube to the button but we didn't really think too much about it. Saturday night Eliza started puking formula. If you've been paying attention you know that that's not supposed to happen while being fed through the J port because there shouldn't be anything in her stomach. Sunday too we could tell she was a little more uncomfortable during her feeds but since it was the weekend we just tried to hang tight until Monday.

After talking to the GI nurse on Monday she asked us to come in for an X-ray and possibly to have the tube replaced. She said that if Eliza was puking formula during J feeds then the J tube most likely had changed positions and was coiled in her stomach instead of feeding into her intestine like it should be. I asked if this was a common occurrence for G/J tubes and she said "It does happen, but never this quickly."

And exactly as predicted the tube was curled in her stomach, in the wrong place. Fortunately the re-placement of this tube went much smoother. I requested some lidocaine for her belly since she was already so sore. The resident was extremely quick, efficient and actually acknowledged Eliza and talked to her throughout the whole procedure which probably took 10 mins. After questioning the radiology folks about why this happened so fast they said we needed to make sure we weren't rotating the exterior "button" of the tube. This is fine with her old G tube, but not with a G/J tube because of the problems it can cause with the J tubing inside her, as we had discovered. It would have been nice if anyone had warned us about that, because when we'd had the button previously placed on Friday, they'd put it in "upside down" so that when we hooked the feeding tube up to it the tube was running up her body toward her face instead of down and out of the way. Naturally after a couple of rounds of that annoyance, Glenn had just turned it around right side up to fix the problem - whoops! Thankfully this time it was put in right side up from the start.

After all this chaos I talked to our Gastroenterologist and we discussed if there were any more problems with the G/J tube we would have to come up with a plan C or D since we weren't willing to continue subjecting Eliza to this. Fortunately we haven't had anything else this dramatic happen with her tube since then (knocking on wood here). She had several weeks of soreness and sensitivity that made everything a little tricky and I think it took her a while to get used to NOT having anything in her stomach at night.

All in all I think the G/J has helped us get a little closer to some of our original goals. The puking is a little better. The interest in eating was (yes, I said "was"!) better. Her comfort at night seems better.

But after a couple months I think we've realized that it's not going to be the only answer. The GERD and interest in eating aren't enough better. So we've continued looking into additional ideas, trials, medical professionals and approaches. We have also been advised to start considering an intense in-patient feeding clinic. There are a few around the country but none in North Carolina. We are looking at ones in Virginia, Maryland and New Jersey. I've heard and read that these can make a huge difference in a child with feeding issues so we are hoping to get on the waiting list for one in the not too distant future. A few of the negatives - questionable insurance coverage, 6 month waiting lists, 4-6 week stay at the clinic (for all of us- no idea how this would work for Glenn). So nothing definite so far, a lot to research and think about, but it's a next step we're considering.