We had another followup appointment with Dr Yazdi today. Things haven't been progressing that well, so we went to the appointment hoping for some answers. Although we've tried our best, we're barely keeping up with his caloric requirements. We seem to have hit a ceiling that we can't get past...so we were ready to take the next step. To be honest, we were expecting Jonathan's doctor to tell us the same thing we have heard over and over for the past few months, that is, "feed him more". Our opinion going into the appointment was that something needed to change because the current approach wasn't working.
The appointment went pretty well. Although we've been barely keeping up, Jonathan had gained a pound over the past two months and grown a couple of inches, bringing him up to 18.5 pounds and 30 inches. I don't know if something finally clicked in the doctor's mind, but he took an entirely different approach this time around and came across as much more proactive. He seemed to agree with us, and finally gave us a plan and next steps that we could take to help Jonathan.
The doctor is giving us two weeks to see how well Jonathan does when we push the rate of feeding overnight up to 55 mL/hr - about a 20% increase. Right now he's on a constant drip overnight for 10 hours. We've had good luck with the drip, so we're going to try to push that as high as possible. If that works, we should be able to meet our goal of 1000 calories per day. We're supposed to give him a call back in two weeks to talk about our progress.
If increasing him overnight doesn't work, then we're probably going to switch out the kind of button he has implanted. As a side note, we have an appointment with a different doctor in a few weeks to get a second opinion before we would make any changes. Right now his button empties directly into his stomach. This works well unless you have a case like ours where it appears that the stomach is the bottleneck. The other option is to get a GJ button, one that has two ports. One port empties into the stomach like we have now, but the second port via a balloon or tube empties below the stomach into the small intestine. We would use the second port into the intestine overnight, dripping the amount we need to past his stomach. During the day we'd still feed him into his stomach, but we'd always have the ability to get past the suspected bottleneck.
There are other advantages to doing this in addition to getting him the food he needs. First, it will help us narrow down what's going on. If dripping into the small intestine works well, then the stomach (motility) is the obvious culprit. It's just emptying too slow and not keeping up. If for some reason feeding him into his intestine still causes him to vomit, then we know he probably has some reflux (GERD) issues. We can only vomit food that's in our stomach, so if we're feeding him past the stomach and he starts vomiting, then we know things are moving in the wrong directly and going back up into his stomach. That is, his stomach can empty fast enough in theory, but things are backing up farther down his system and that is the real problem. I've talked to Stacey a few times about this idea in the past, considering her family history with intestinal problems. We'll see what happens if we go this route. Depending on the outcome, it could mean trips to see specialists for testing in other states.
One drawback to a GJ tube is that it would need to be replaced every three to four months. However, a second advantage of a GJ tube is that we could really start working on introducing solids during the day. We may be able to replace one day feeding with real food, and over time gradually replace all of the day feedings with solid food as he learns. I guess we have a few weeks to see how increasing his feeding overnight goes. At least we feel like we have have some options and some direction now.