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Holding steady

It's still hard to say if Raya's stomach weirdness this week is the result of an extremely mild and virtually undetectable virus or a sudden drastic decrease in her motility, but today has been a pretty good day. I chatted with the GI nurse yesterday in the late afternoon and she told me they've had several of their motility/GI kids' parents call with similar issues, but she said most or all of them had a low grade fever at some point and/or diarrhea along with the vomiting and Raya has not had either of those things, so I'm still not completely convinced that it's viral. However, there's also the dreaded possibility that a mild stomach bug has thrown her motility completely out of whack even though there is no longer any sign of a virus. (aka the complication we've always worried about) It really should be a law that all viruses should have to come with a fever so that parents like me would know whether their kid is sick or just having more GI problems.

She's had a good day other than being a little more tired than usual. I am attributing that to the fact that she has gotten just a fraction of her normal caloric intake all week since we've had to run pedialyte and diluted formula at slower than usual rates to keep her comfortable. I sent her to school without her pump on this morning because her stomach was still full of formula from her overnight feed, and because she was supposed to have feeding therapy after school. Her feeding therapist canceled last minute because of a migraine, but I figure that was probably for the best since Raya wasn't too interested in eating anyway. Sensory-wise, she's been a little out of whack this week and was not a fan of getting her massage & joint compressions at OT. You can almost always tell that something is off with Raya's GI tract by the changes in her speech. It's the strangest thing but it's absolutely connected. She gets harder to understand when her gut is acting up.

I accidentally made her puke today. I was trying to check for residuals to see if her stomach was still full of formula after school and the tube was blocked by potato chip goo. Usually if there's a little blockage like that, it doesn't bother her in the least bit for me to push & pull a little bit with a syringe to clear whatever is blocking the tube. Apparently her stomach is extra sensitive right now though because she started dry heaving. Then she kept dry heaving for a good solid 2 minutes but nothing came out so I'm guessing the formula had cleared her stomach by then. Lesson learned: don't try to clear potato chip goo or other food goo from the tube with a syringe when she's having a bad motility week.

I got a good chuckle out of her this morning. We were ready to leave for school and I heard her talking. I looked over the back of the couch and saw that she had tucked in some of her stuffed animals and was giving them instructions for while she was gone to school and saying goodbye to them. Stinkin' adorable.
Then I couldn't help but laugh and sigh at the fact that the majority of her stuffed animals have come from the hospital. The big lamb on the left (aka Momma Lamby) is one that she stole from a sibling. The raccoon came from her awful impedance probe overnight hospital stay in May. The small lamb is from an emergency endoscopy and first attempt at GJ tube placement, and the ugly parrot thing on the right is from her pH probe when she was 7 months old. Normally she has more than 4 with her at a time so I'm surprised there were only 4.

Hopefully she'll start to get some energy back when she's back on full strength formula tomorrow. Today she's been on 2/3 formula and 1/3 pedialyte with additional fluids as usual, and she's been at a continuous rate of 75ml/hour. I might cry if we can't get her back on 2 or 3 hour bolus feeds in the next few days. Having her go from tolerating a whole 8 oz feed in 30 minutes to not tolerating anything faster than 8 oz in 2 hours last fall was a painful setback. If what we're dealing with this week ends up being a motility problem rather than a temporary illness and we're stuck at 75 or 80ml/hour, that's pretty much going back to where we were about 2 1/2 years ago. Ouch. Fingers crossed that things will get back to normal (whatever that means...) very soon!

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