| Later updates | Aaron update 132 |
| Subject: Aaron update 132 Date: Thursday, November 20, 2003 8:04 PM From: Kevin Quick To: Aaron Update List Another long day. We're home now, and thoroughly exhausted. This morning, we met with the pulmonologist Dr. Hardy's team: pulmonologist, nurse practitioner, dietician, physical therapist and social worker. We discussed all kinds of details regarding feeding, physical exercises, and a lot of other things that I just can't remember now. (Yes, it HAS been a long day.) We delayed talking about the GI tests until after we had had today's test... We went to the radiology department of CPMC's Pacific campus, and Aaron had his barium swallowing upper GI test. We started out with yours truly feeding Aaron a barium solution via his bottle. As I fed him, an x-ray machine took x-rays. The x-rays were displayed on monitors in real time, so we could see Aaron swallowing, we could see the barium going down his esophagus as he swallowed, and we could eventually see the barium making its way into Aaron's digestive tract (you can see the barium in Aaron's stomach and small intestines on the monitor in the attached picture). Kathleen was behind a shielded wall during this process, since she is pregnant. She was able to watch the show on another monitor. Then, we needed Aaron to eat a larger amount of the barium mixture, so Kathleen fed him a couple of ounces more; enough to fill his stomach a little bit. This process didn't go as smoothly as we liked, as Aaron didn't like the taste of the barium, he threw up, and made a pretty good mess. But, Kathleen eventually got enough barium into him, and the test was completed OK. The doctor (radiologist?) said that Aaron's digestive system looked fine. She said that sometimes, there is a vein of some kind that constricts the esophagus, but Aaron had no sign of that. Also, she saw no visible sign of reflux, although there could have been some reflux when Aaron threw up, but that event was not captured on the x-ray machine. We then met again with Dr. Hardy's team. Dr. Hardy and Dr. Lin (the gastroenterologist) said that yesterday's liquid gastric emptying test showed that Aaron's stomach is emptying a little slowly. So, Dr. Lin gave Aaron a prescription for Reglan. Reglan enhances the contractions of the stomach and small intestines, helping food to pass through more quickly. This should help Aaron to feel hungrier more quickly after eating. If the Reglan doesn't do the trick, then, Aaron will have a more definitive, overnight reflux test in a month or so. Kind of a depressing thing... To make sure I was spelling Reglan correctly, I did a Google search on Reglan, and came up with quite a few scary articles about Reglan's side effects, including some pretty severe ones, including muscle twitches, hallucinations, etc. There were some horror stories, too, of people who had taken the drug and basically gone insane. It looks like there may be a class action suit going on for people who have suffered from some of these side effects. One (non anti-Reglan) article said that it's not recommended for children under 12. At this moment, I'm not so sure we want to give this drug to Aaron. We'll have to do more research. If anyone else would like to do some similar research and let us know what you think, we'd be open to your suggestions. So, we thought we had a possible "fix" here, but now I'm not so sure. Darn. Maybe we should just see if we can get Aaron to eat his 120 calories per kg of body weight by trying different foods, first? Sorry to end this update on a not-so-positive note; I hadn't planned on doing that. But, it looks like we've got more work to do, and important decisions to make. Again, we so much appreciate your prayers for wisdom on our part, as we continue to navigate through this thing. Love, Kevin, Kathleen & baby #2 |
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