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The weekend

Well that weekend flew by. Raya and I spent Thursday night in the living room so I could keep an eye on her. She would get upset if I picked her up to take her to bed and it was a battle I didn't feel like fighting, nor did I have any desire to clean up tantrum-induced puke so we stayed on the couches. She, of course, hogged the big couch.
She got Pedialyte all night that night. I used the marvelous Interval function on her Zevex Enteralite Infinity pump to give her doses of 100 ml at a rate of 50ml/hour with a 1 hour break in between doses. It's amazing what a little extra hydration will do for a kid. She still had a low grade fever but was feeling a lot better so I fed her half Pedialyte and half Peptamen Jr all day Friday. I don't remember exactly when but sometime after business hours on Friday I noticed that she had a funky, nasty fishy odor coming from her stoma. That can be an indicator of an infection or bacterial overgrowth. I decided that since she didn't have a fever anymore and didn't have any other signs of infection, it didn't warrant a trip to urgent care. Our last couple visits there haven't been very good anyway so I avoid going there unless we have to. Another thing that's been going on with her this weekend is her coughing and sputtering all night long. It sounds like either post-nasal drip coughing or reflux coughing. Maybe a little of both. She hasn't had a runny nose or anything indicating post-nasal drip but you can't always tell. This morning, she had 2 poopy diapers in 2 hours and both of them were more runny than usual and a bit on the stringy side, which may support the post-nasal drip theory. She's got a frog in her throat this morning too. She's been jabbering non-stop all morning because her voice sounds funny and she likes it. Her temp was back up to 99.9 this morning but went back to normal after her nap. She's supposed to have 4 therapies this week so hopefully she'll be feeling up to it. She's been clinging to me all weekend, which is a nice change except when I have things to do. She's awfully cute with her little croaky voice saying, "want you!"
She's become rather opinionated lately. Her OT tells me that this is part of the next stage of sensory processing and it's because she's gaining a greater sense of self. She now has opinions about what she wants to wear, which leads to us leaving the house in flashy combos like this:

We decided to get out of the house for a while this evening (read: turn off the AC in a futile attempt to keep our electric bill from going through the roof) so we stopped at Little Caesar's for a $5 pizza (which thankfully can still feed all of us. barely.) and ate it in the parking lot of the library. We were going to eat outside at a picnic table by the little lake next to the library but it was still about 105 degrees so we opted to scarf it down in the car. Raya asked for some pizza but then took one little nibble and changed her mind. To further reinforce the fact that she's not feeling like herself, she sat quietly in her stroller for the entire 1 1/2 hours that we were in the library. SO not normal. She only took a couple books off of the shelves, never asked to get out of the stroller, never cried or whined, and half of the time she was holding onto the stroller with both hands. That was weird.

When we got home, she was in dire need of a shower so I hosed her down and took her in the living room to get her dressed. When I was drying her off, I noticed that her poor little belly seemed pretty distended again so I got the bolus extension & plunger-less syringe out to vent her. At first when I plugged it into her G tube & unclamped the extension, nothing happened so I decided to have her stand up. That got a little bit of air out but not much. She sat down and I told her to lay down but instead of laying on her back, she curled up into a ball. When I helped her roll onto her back, the tube got pulled towards one side and a HUGE belly burp came up. For the next couple of minutes, I kept repositioning her and the tube a little bit to see how much more air we could get out and by the time we had gotten out all that we could, her tummy had gotten visibly smaller. It made me sad for her because she never says her tummy hurts, even when I ask her if it does. Sometimes I think her tummy might be bothering her because of the way she's acting, but she never cries or grabs at her tummy or hunches over or does anything that you'd expect to see from a child with a tummyache. It also begs the question: how the heck does her belly get so full of air to begin with?! Okay, well she's swallowing air, obviously, but in the time that she got her 2 feeds this afternoon/evening, she didn't really eat or drink anything. She probably does have some post-nasal drip going on that makes her swallow more air than normal and/or aggravated reflux due to nasal congestion that's making her swallow more air than normal. This is when I wish we had some farrell valve bags to use while we feed her and maybe while she's sleeping just to let the air out of her stomach. And while I'm rambling aimlessly about Raya's congestion and such, here's another thing I'm a little worried about. When she was vomiting her little guts out Thursday night, she had it come out her nose and was coughing like she'd accidentally inhaled some. Now I'm a little worried that this croaky voice, nighttime coughing, and nasal congestion has to do with the vomiting. I still think she'll be fine in a few days because she does seem to have a surprisingly strong immune system but I don't like the idea that she may have a respiratory infection that's secondary to vomiting. She might not. But she might. I may never know. *sigh*


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