One way to detect DGE is with another fun acronym: NMGES. Also known as a nuclear medicine gastric emptying study. Raya's had it done twice. First, they put some radioactive stuff in a little bit of formula (not enough, if you ask me) and put in through her tube, then they strapped her to a table and slid her under the scanner like a little Raya sandwich, and then she got to lay there like that for about an hour. Lucky for her, she had her DOC band (cranial orthotic) to use as a pillow.
Raya's motility has been a roller coaster her whole life, but in the last 3 months since we moved, we've been on the part of the roller coaster where you're getting flung all over the place unpredictably and mercilessly while saying a prayer that the safety bars stay in place. Just when we think she's getting back to her previous level of function, she has a really lousy day and we're going backwards again. Today started out fairly well but ended as a not good motility day. (you know, kind of like a bad hair day only it's a bad gut day?) She actually ate a lot today. More than she has eaten in a year, pretty much. She asks for food all day long. When it's meal or snack time, I give it to her. Today, she ate 2 of her gluten free crackers, applesauce, part of a quinoa pancake with syrup, some of the wheat free cornbread I made her, and chili beans (ok, mostly just the sauce). She had 2 formula feeds earlier today and another one at bedtime. After she'd been asleep for an hour or two, she woke up in obvious discomfort. We waited to see if she'd go back to stereo and she did after a couple minutes. Then 2 more hours went by and she's crying again. The second time, I got her out of bed to see what was wrong. She wouldn't talk or answer questions or even nod her head. I started to burp her with a syringe but after formula started coming out, I connected a Farrell bag and dropped it on the floor to drain her stomach. It kept coming and coming until her stomach was empty and air was coming out instead. She felt better as soon as her stomach started emptying, and her belly wasn't distended anymore like it had been. When all was said & done, there was 120 ml in the Farrell bag, which was about half of the feed, and it had been 4 hours since the start of the last feed.
Granted, part of that is remnanats of the gluten-free cornbread I made her for dinner, which she seemed to really like. She ate about 4-5 cubic inches of it (that's how I measured it because that was the easiest way to estimate calories). I'm a little scared of the fact that she woke up crying twice and eventually had to have her stomach drained in order to feel better. I don't know if that means she's having more motility problems or if she's starting to not tolerate something she's been eating. That would be crappy because she's been eating a decent variety of things lately and goodness knows which thing might be bothering her.
**Side note: until Raya was born, I had no idea that motherhood would mean repeatedly and intentionally sniffing my kid's belly puke in order to determine if the belly puke is mostly formula or solid food. I think there's a reason nobody tells you these things beforehand.
The idea of doing another GES has come up in the past 3 months, but most likely it would come back WNL again because that's just the way tests always seem to go for us. And like I've said over and over again in the past 3 months, when you can get half of the feed volume back out of the stomach 4+ hours later, the kid has DGE. Period.