I love this time of year but I'm starting to think that we should just go into the month of October with low expectations. Raya's first October was just plain awful (i.e. vomiting blood for the 2nd month in a row, miserable, half the month in the hospital, etc.). Last year was exponentially better than that but still no picnic. I was reading back through last October's posts and realized that the only thing that's really changed since then is that Raya's list of suspected food allergies has grown. :) Other than that, we've pretty much broken even with progress towards oral eating. I feel like we've gone way backwards recently with all the foods we've taken away from her but her eating skills have improved and her willingness has increased so that's a plus.
I'm starting to wonder if corn is a problem too. She's been eating primarily corn products for a couple weeks now (Fritos, Puffcorn, Tostitos, Kix, etc.) since she's been wheat-free and rice-free (and dairy-free and peanut/tree nut-free and oat free...) so it's been disappointing that she's had a bad week this week. When I say "bad week" I mean she's been gassy (both ways), super crabby, tired all the time, needing her feed rate cut in half, needing to be vented more, telling me she's hungry which really means her stomach hurts, and her gastric emptying has been delayed. And the little dotty rash around her mouth has flared a little bit again, which could possibly be completely unrelated or it could be because I caught her eating a granola bar a couple days ago that she managed to get her hands on. I had hoped that in this house, she wouldn't start climbing on the counters to get into food but I walked into the kitchen this morning just in time to grab the box of Cheese Nips before she dug in. She was sitting on the counter and the crackers had been on top of the fridge. We might have to barricade the kitchen with the baby gate like we talked about before we moved in. Bummer.
Wednesday night I decided to vent her before I gave her meds at 10:30. I couldn't really see because it was dark in the bedroom but when I opened the cap on her G tube, liquid started coming out. I hurried and connected the bolus extension with the empty syringe on it and I could tell that what was coming up into the tube was not a normal color. There was a LOT of gas too. If she'd been awake, she would have thought all those "tummy burps" were hilarious. :) After I let everything come out that would, I gave her the meds and took the syringe of mystery liquid in the kitchen so I could see it. It was a shade of orange that I've never seen come out of a stomach before. The orange liquid was separating out and floating on top of the white liquid, which was also strange and something I'd never seen before. She had eaten Fritos for dinner 5 or 6 hours earlier but that was it. (and yes, I realize Fritos are not an ideal or healthy choice for a 2 year old but there aren't too many other options right now)
Yesterday was another off day for her. I walked into the living room in the morning and found the two little girls all snuggled up on the couch. It was adorable but not normal AT ALL for Raya to do that. They laid there like that for several minutes.
I reduced her feed rate to 335ml/hour instead of 600ml/hour so her feeds last about 45 minutes now instead of 25. She's not happy about that because she's gotten so used to not having to wear her backpack and throws a fit most of the time when I try to put it on her. Then it turns into a wrestling match. I also started using a Farrell bag again to vent her during feeds. It's quite the contraption. It basically turns a pump feed into a gravity feed by allowing formula to run up another tube and into a bag if there's too much pressure in the stomach for it to go in right away. Then as there's room in the stomach, it will run back down the tubing and into the stomach. It also allows any air to escape from the stomach during feeds which is helpful for kids who can't or don't burp. Raya can but seldom does. The only tricky thing about Farrell bags is that for Raya, unless it's hanging a couple feet above her belly, the formula will not run into her stomach. It backs up into the bag and stays there. Solution: hang it from whatever is closest. Yesterday, it happened to be the light fixture above the table:
In the car, we used the little hanger hook. It works great. :) I had parent teacher conferences for the big kids yesterday afternoon. Raya had fallen asleep on the way home from OT (which was a very different experience since the SPIO had gotten puked on by another kid the day before & was at someone's house getting washed) and slept for about 2 hours on the couch.
She woke up right when I needed to get ready to leave, which was good timing, but she was a mess when she woke up. She was angry, crying, kicking anyone that got near her, grabbing at her stomach when I tried to vent her, etc. Then I eventually got the extension plugged in and air & formula immediately started coming out. I half carried, half dragged her into the kitchen whilst trying not to spill the stomach contents on the nice carpet and drained what was there into a cup. She was throwing a fit, rolling around on the floor (which really complicates trying to drain her stomach) and just being a pill so I finally gave her chocolate so she'd hold still while I finished. She had about 2 ounces come out, which was 20% of the last feed she'd had, which had been 4 hours before that. It wasn't as bad as the last time this same scenario happened but she probably shouldn't have had anything left in her stomach. If she was comfortable and still had that much it wouldn't be an issue but she was clearly not feeling well. I took her to parent teacher conferences with me and she refused to walk so I had to carry her. She's getting WAY too big for that. :)
This no napping thing is starting to get to the both of us. She's always had a somewhat inconsistent nap schedule thanks to being at the mercy of her appointment schedule but she's pretty much stopped napping now. This is not to say that she doesn't still need naps. She's tired, I'm tired, we all just need naps. We started melatonin last night so I still have my fingers crossed that it will help but I'm not holding my breath. I thought for sure she'd go to sleep today since she had her daily poopy diaper a couple hours before naptime but no luck. Oh well, at least she's happy for the moment. :)
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