I hate vomit. I especially hate when Raya vomits and I don't know if it's dysmotility vomit or sick vomit. She puked at school on Monday and then finished emptying her stomach into a towel in the car on the way home. Once her stomach was empty, she was right back to her normal happy self. I fed her pedialyte all day Monday and she seemed to feel better than she has in weeks. Not that she seemed to feel bad the last few weeks, but she definitely felt better on pedialyte. By late that night when she had not had any more signs of possibly being sick, I concluded that whatever made her throw up was probably not viral and probably had to do with her motility issues.
Tuesday, she was absolutely delightful pretty much all day long. I didnt want to jump right back to her normal feed schedule with full strength formula just in case her stomach was still feeling sensitive. Instead of full strength formula, I did half formula and half pedialyte so it would be easier to tolerate. I also fed her at 75ml/hour for several hours instead of the usual 250ml feeds at 135ml/hour every 4 hours. She was in a great mood the entire day and aside from telling me a few times that she was tired, her energy level seemed normal too. No vomiting and only one poopy diaper.
Wednesday morning she was pretty tired and crabby when she got up. I accidentally woke her up by bumping her with my foot when I got out of bed because I didn't know she was on the floor by the bed. Oops. She wasn't very cooperative getting ready for school but once we were in the car, she was happy. I gave her 2/3 formula and 1/3 pedialyte and ran it in at 85ml/ hour so that she'd be able to get all of her fluids in for the day. When I left, she was happy as could be. I didn't really get a chance to ask her teacher all the detailed questions I wanted to about Raya throwing up at school Monday but I I did tell her that Raya was totally fine after her stomach was empty and had not shown any signs of being sick. The teacher said that by the time they got to the nurse's office, Raya was happy, dancing around, and chattering away like her usual self so she didn't think Raya seemed sick either.
She had another great day Wednesday. She played all afternoon, got her nails painted by her respite provider, and stayed happy & pleasant until about 5, which is later than usual. She had her evening meds, laid down on the couch and went to sleep (after demanding to snuggle with me and then telling me I had to lay on the other end of the couch). After she fell asleep and had scooted down off of the incline she was laying on, her shirt came up and I couldn't help but notice that her G tube was sticking out really far. If I pushed it back down, it would come back up. The balloon has plenty of water in it, so it shouldn't be this loose.
She mumbled in her sleep a couple of times but that's not unusual. Right as I was deciding it was time to go to bed, she was laying flat on her back on the couch and started erupting like a little vomit volcano. I grabbed her and rolled her over so she wouldn't choke and tried to keep it all in the blankets she was laying on and the t-shirts Donny was frantically throwing at me to catch puke with. She just kept puking and puking. I couldn't believe how much was coming out of her. For having only been fed at 85ml/hour, there was a TON of puke. Probably 6-8 hours' worth plus the tater tots she had eaten for dinner 6 hours earlier. Donny put her in the shower while I started a load of laundry and scrubbed the couch cushion that had gotten wet. We got clean jammies on her, threw a blanket down on the floor next to the clean/dry couch, gave her a puke bag just in case, and I got her late night meds and some pedialyte ready for her.
I didn't dare leave her in the living room by herself but I also didn't want to bother her since she was comfortable, so I did what any 7 month pregnant mom who didn't want to sleep on the floor would do: I threw a quilt over the giant wet spot on the middle cushion of the big couch and slept there. I gave her 50ml/hour of pedialyte all night long with a Farrell bag connected to her to vent her stomach. I think I finally went to sleep at about 2:00.
Once again, she's totally fine this morning. I'm at a loss. If it's not a virus, then why the heck is she suddenly having such a drastic decrease in her gastric motility? It's probably a virus of some kind, but if it's a virus, it's the strangest virus I've ever seen. There are virtually no symptoms other than her vomiting 2 days apart and not tolerating her usual feed rate. She's felt better in the last 3 days than she has in a few weeks, which I assume is due to being fed much more slowly and getting diluted formula instead of full strength. She hasn't had a fever at all and has stuck with her usual one poopy diaper a day. On the bright side, once she emptied her stomach last night, her G tube stopped sticking out like a turkey timer and looks much more normal now. Normally when she has a virus, I do pedialyte for 24 hours or until she no longer has a fever and then work back up to full strength formula at the normal feed rate as tolerated. How the heck am I supposed to follow that protocol when there's no obvious signs of illness to go from??
This kind of stuff is what makes me want to quarantine her and the rest of my kids for the entirety of cold & flu season. Parents of kids with normal digestive systems know that when their kid gets over a stomach bug, everything will go back to normal. Having spent so much of Raya's early life catching vomit, cleaning up vomit, explaining away vomit to strangers, and trying to figure out how to stop the vomit, all I can think about whenever Raya throws up is that it could be the start of another 18 months of uncontrollable vomiting and dysmotility. Before I had Raya, I didn't know that it was possible for a virus to cause a digestive tract to shut down. I had no idea that some people's digestive tracts just randomly shut down for no reason. I've been able to go along feeling like the worst was behind us and she's over the mysterious condition that made her vomit so much and required us to take such drastic interventions early on in her life in order to get and keep her healthy. I've felt like she's medically fine now other than her stomach being a little slow, and it's just a matter of finding food that doesn't make her sick and convincing her to eat it. Then something like this week comes along and I can't help but worry & wonder if maybe we're not as out of the woods as I thought we were. Even if it is a virus, it's possible that her medical history could make her more prone to longer-term complications from it than kids with normal digestion. In other words, any other kid that gets it would get over it and be fine but it might set her back to where she was 2 or 3 years ago and we'd basically be starting all over again. I can't really even put into words what that giant question mark feels like. (and it's probably best if nobody asks me the standard, "Is this something she'll grow out of or will she always need the feeding tube?" question this week) I am still incredibly grateful that her medical issues have not been imminently life-threatening like so many of our little friends, but setbacks and the fear of setbacks are never easy on a mother.
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