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Friday, March 1, 2013

Score one for delayed gastric emptying

I knew I was premature in my excitement over the vanilla Elecare "pudding" that Raya's been eating. I wrote a few days ago about how she's decided that she likes drinking small amounts of vanilla flavored Elecare formula. Then I had the idea of using thickener to make the formula into a pudding consistency so that she'd have something she could actually eat that has some nutritive value, as opposed to the Smarties & DumDums that she pretty much won't even touch anymore. She LOVES her Elecare pudding! Since I started giving it to her a few days ago, she has gotten to where she will eat the equivalent of 3 oz of formula in "pudding". On top of that, she takes enough small drinks of the vanilla Elecare formula to total about 2-3 oz per day, so in all, she's consuming orally as much as 5-6 oz of formula. That is HUGE for her, and very exciting for us. {here comes the "but"}

BUT. {why does there always have to be a but??} We've been reminded that Raya's stomach does not empty solid food very well. You wouldn't think that a rather runny pudding consistency elemental formula would have THAT hard of a time moving from her stomach to her small intestine but apparently it is. Last night, she ate about 2 oz of her pudding (a few bites at a time over the space of an hour) for dinner. After dinner, she started her evening formula feed and then went to bed an hour later. An hour after she had gone to bed, she woke up crying. Not sad crying, yell crying. Pain crying. I left her in her bed for about 15 minutes because sometimes she will stop and go back to sleep, but since she hadn't stopped, I got her out of bed. She seemed like her stomach was bothering her so I tried to ask her if her stomach hurt. She was not in a state of mind to be able to communicate with me at all. I rephrased my question 20 different ways and never got so much as a nod from her. I think I was annoying her by asking. :)

I decided to vent her stomach to see if that would help her feel better, so I sat her down on the counter in the kitchen and connected a leg bag to her extension tube. (I learned the hard way that when she's not feeling good like that, it usually means there's more than a 60ml syringe can handle so I don't use a syringe to vent her.) I wasn't surprised to see formula coming out but I couldn't believe how much came out. I had to detach the bag (which is supposed to hold 9 oz) and empty it before reattaching it to vent her some more. I got 7 ounces of Neocate + Elecare pudding goo out of her stomach, plus a whole bunch of gas. No wonder she didn't feel good. It had been over 3 hours since she had eaten the 2-ish ounces of her pudding, and 2.5 hours since her formula feed had started. There shouldn't have been 7 ounces of food/liquid in her stomach. That means that in 3 hours, only 3 out of 10 ounces had left her stomach, and that is definitely more than she should have had. A couple ounces would have been okay, but 7 out of 10 is too much.

Normally when she wakes up like that, she calms down after I empty her stomach. This time, she kept crying and the meltdown kept going. Not only was she crying and having a fit, but she was climbing on the counters trying to get to something. What she was looking for, I don't know. I tried to figure it out, asked her if she was looking for a bunch of different things, plucked her off of the counters 3 or 4 times, helped her down when she was trying (extremely unsafely) to get down by herself, and she just kept on melting down. She got upset at me when I helped her down and climbed back up so she could get down herself.

To make things even more fun, she has wicked reflux when she's upset. I'm 99% sure she refluxed clear up into her nose at least once. That sucks. Nasal reflux is not good.

Thankfully she's had a fabulous day today. She woke up at 5 soaking wet and cold because her diaper overflowed, but after I cleaned her up, she took a nice nap in my bed and drank 3 ounces of vanilla Elecare for breakfast. We had a GREAT session at OT for the first time in about a month, and she had a pretty good feeding therapy session too. We brought some of her Elecare pudding with us and she did a good job eating it and then played food games on her therapist's iPad.

When we came home, she had a really good nap and has just been in a good, happy mood all day long. It's a nice break from the rough patches she's had this week. Now if I could just get the GI office to call or email me back...

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