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.

Feeding tube tribulations

So that was funny huh? My sincere post about posting more and then I don't post anything for a month. Good going self! :)

There's been a lot going on with Eliza's feeding tube over the last month. I've been very slow to update about the fiasco we've had with Eliza's tube because its been ongoing but think we are finally moving out out of the chaos now. Hold on to your butts, long post ahead.

Oh about 6 weeks ago now (holy cow 6 weeks already) Eliza had a GI procedure. As mentioned before, Eliza has a case of reflux (GERD) not to be laughed at. There's been many a day we've cleaned up 4-5 projectile vomits a day. According to Eliza's Gastroenterologist most infant (and preemie-related in our case) reflux gets significantly better by age one. Since Eliza's only got worse instead, he wanted to rule out eosinophilic esophagitis that can cause reflux. He also wanted to get a good look at her esophagus and stomach to make sure everything looked typical. We also discussed getting her G tube replaced with a G/J tube (I'll discuss this more in a second). So since she was going to be under anesthesia for the upper GI scope anyway, we decided to go ahead and get the G/J tube placed as well, since it would require dilating her current g-tube tract up 2 sizes and this would be an extremely uncomfortable and drawn-out process for her if awake.

So first, the results of the scope and exam. We now know that she fortunately does NOT have eosinophilic esophagitis! The procedure also found her esophagus looks typical - for a child with reflux. However, Eliza's GI is concerned about a piece of tissue (pancreatic rest) in her stomach that is attached adjacent to her pyloric sphincter (as of course you MUST know, that's the opening to her small intestine). Basically, it could be intermittently blocking the formula's exit from her stomach into her intestines. He has seen this in another child that had regular vomiting and once they removed the tissue her vomiting stopped. But since we still have lots to think about with reflux, the plan is to leave this be for now.

Back to the G/J tube. This is an attempt to help Eliza with the reflux and also with oral feeding. G/J's look very similar to G tube buttons on the outside except with an extra port. But the structure is a lot different on the inside. There is a long tube connected to the extra port that is threaded into her small intestines (jejunum). Basically she can be fed into her stomach through the "G" port (like usual for her) or we can use the other "J" port to bypass her stomach completely and feed her directly into her small intestine (modern-day science is a crazy thing eh?). Of course formula has to be fed at a much slower rate through the J port, since intestines cannot handle large amounts of food at a time (otherwise known as a "bolus" in feeding tube world) but since she was already getting fed continuously overnight this wasn't going to be a big change for us. 


Some people require this type of tube because they can't tolerate or digest food in the stomach but for Eliza the situation is a little different.  The hope and plan for the G/J with Eliza is to: 1) be able to feed her a little more formula overnight on continuous J feeds and also eliminate any overnight vomiting (since there wouldn't be anything in her stomach to vomit) 2) be able to reduce amount we feed her by G tube during the day therefore also decreasing reflux during the day 3) Decrease her feeling of fullness (and discomfort) during the day 4) Having all of these combine to form a more encouraging environment for eating orally - less reflux, less vomiting, and less fullness should make for a baby who wants to eat more!

So the initial procedure to place the tube went pretty well! I was worried about anesthesia due to her past troubles with adrenal insufficiency. I asked the Anesthesiologist to keep a close eye on her and she did fine and woke up quickly. I asked our GI specialist about getting a back up G/J tube in case this one falls out (like her g tube has in the past) and he told me we don't get a back up since this type of tube can only be placed with use of a x-ray (fluoroscope to be specific -- but folks round the hospital just refer to it as radiology). Therefore we must come back to the hospital if anything happens to the tube.
Dun dun dun...

Next day: Eliza's tube started acting suspicious and right at 4:30pm it partly fell out. We taped it down to her belly so the whole thing wouldn't fall out... because if it did, her tract could rapidly shrink closed or even seal up entirely, which would need more surgery! Now with the timing of this incident (radiology closes early it seems) we had to go to the ER to get it fixed. Unbeknownst to us, the ER department can't place a G/J any more than we can - it seems they don't have a fluoroscope either. A resident fished a g-tube button out of the bowels of the hospital (literally what he said) for us to use in the meantime and off we went back home. (As it turns out the balloon that was supposed to hold the tube in place for months, was defective.)

Next day: Back to children's hospital, radiology department, and under the fluoroscope to get a new G/J placed. Mind you this is the 3rd time in 3 days Eliza's belly has been massively manipulated. Furthermore since we go to a teaching hospital the residents have to give it a good go first before they let the attending radiologist step in to get it properly placed. (Side note: Why do the parents have to hold their child down for these types of things? I want to be the soother, not the torturer thank you.. and making us do both things simultaneously pretty much means we're gonna suck at one or the other of those. One guess for which one!)  Ugh it was pretty horrible for all of us. But it was done and Eliza took a good nap after that. Did I mention this was a Friday? Yep dun dun dun again.


To be continued in part 2....