The Daughter Chronicles

Saturday, April 06, 2013

Mia's stomach problems: Continuing down the rabbit hole (so to speak)

When last I checked in about Mia and her tendency to vomit, she had been put on a new formula (which didn't work) and the doctor had ordered a gastric scan to see what was what. Let's pick up the story there, shall we?

Over Spring Break (the second week in March), I took Mia to the hospital for said gastric scan. They put a radioactive dye in her formula (yummy!) and put some into her stomach and then let her lie there for about an hour while they watched what happened. A few days later, the doctor called and said that, yes, her stomach empties much more slowly than it should. I mean, I could have told them that, but they used SCIENCE! to confirm it. Yay, SCIENCE!

The doctor prescribed erythromycin to help clear her stomach more quickly. Some of you (those who have no actual life, I would imagine) might be thinking to yourself, "But Greg, isn't erythromycin an antibiotic?" Correct you are! However, a side effect of erythromycin is that it's a "gastric agonist," which means it helps the stomach digest things faster. How handy is that? (On a side note, Gastric Agonist was the name of my punk band in college.) One of Mia's therapist's sons (phew!) actually took it a few years for the same reason, and it helped him quite a bit. So we got some erythromycin and fired it up!

Yeah, it didn't work. She had a few days during which she managed to get three complete feedings in her, but over the first week, I think she had two (2) vomit-free days and four (4) with vomit (on the 7th day, I didn't feed her the third time because we had an Ice Cream Social at Norah's school and I didn't want Mia to vomit at the event). So I called the doctor, and a few days ago, back we went!

I hadn't spoken to the doctor about the actual gastric scan, but she said it didn't show WHY her stomach wasn't emptying as fast as it should, just that it wasn't. SCIENCE! She then suggested that we need to slow down the rate at which we fill her stomach. I don't really think her vomiting has anything to do with the speed at which she's getting the food - last Sunday I didn't feed her after about 1 in the afternoon, and she threw up around 5 in the afternoon. She had four hours to digest with nothing going into her stomach, and she still threw up. But I figured we'd give that a chance. More than one person has suggested feeding Mia at night, because then you can do a ridiculously slow feeding and it doesn't interfere with her life at all. We object to this for a few reasons: One, Mia likes to figure out how to take things off, and we fear she'd figure out how to pull the tube out of her stomach. Unlike other kids, you can't explain to her that this is for her own good. Two, I posted these pictures on Facebook a few weeks ago, because they were very cute:

Mia sleeps in a fetal position and moves quite a bit during the night. We fear that she'll do something to the tube running out of her stomach and detach it that way, not even deliberately. So night-time feeding is, we think, out. On Thursday we sent her to school and they fed her very slowly for 5 hours. When she came home I fed her for another 4. She only got ~550 ml of formula into her, which is far less than the 800 or so that the doctor wants. She's only awake every day for about 12 hours (maybe she'll need less sleep if she gets more food, but right now, she really needs it), so basically we'll be feeding her constantly. But we're willing to try. Then, yesterday (Friday the 5th), we got about another 500 ml into her ... and she threw up. Good times! So today I'm feeding her the regular way, which means she's not going to get very much into her. On Monday I'll call the doctor again and tell her what's what.

The doctor has decided to give her a new kind of formula which is just blended food, but we haven't gotten that from the medical supply place yet. She's also going to do an endoscopy to see what's going on inside Mia. We'll see what happens with that. I'm convinced her brain is telling her stomach the wrong thing - maybe telling the wrong sphincter to close so that the food comes up instead of going down. The brain is a weird organ, and who knows what Mia's is telling her body. I think the only way we're going to get her to stop vomiting is the get the neurologist involved. But that's a rant for another day! I'm perfectly happy with the doctor's last suggestion, which is hospitalizing Mia for a few days to check her out thoroughly. Maybe I can convince her that that's the way to go. We shall see!

So, a lot of stuff going on with Mia and her digestive system, and none of it working. Mia: The Perfect Metaphor For The American Government! Whoo-hoo!

(Oh, that was just mean. It's an insult to traumatic brain injury sufferers everywhere!)

Tune in later for ... progress? Wouldn't that be nice?


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