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And now we wait

Raya got to go visit her friend Bobbie yesterday in Drawing Station 1. She was very tough considering how difficult it always is to find a decent enough vein to draw blood out of. We used to see Bobbie outside of the clinic and Raya always had this look of, "I feel like I should know you but I just can't put a finger on it..." Well, as soon as we walked into the draw station & I sat down with her in the chair and Bobbie turned around in her lab coat, Raya remembered where she had seen Bobbie before. :) Then she tried to tie the tourniquette around Bobbie's finger just like Bobbie had tied it around her arm. It was cute in a sad sort of way. :) There were tears shed while Bobbie tried to get the needle to go in but she never really fought to get away like she used to. That in itself is kind of sad too but hopefully she's starting to realize that fighting it only makes it worse.

I don't remember the name of the other labs that they were running but it had something to do with liver enzymes and possibly pancreatic enzymes, and of course the fasting blood glucose test. I'm anxious to find out the results. Mostly, I'm just curious to see if the last high glucose was just a fluke.

So in other news, I talked to the nurse yesterday and she said that the doctor does want to pull the GJ and switch to a G tube for a while, but she wants us to wait until she gets back in town in 2 weeks. I understand that, but UGH! Now I get to sit around for 2 weeks and speculate about what will happen when we no longer have the reliability of the J tube to get Raya's meds in, not to mention running 900ml of formula into her stomach, which hasn't had more than 250ml in it during a 24 hour period since October. I'm trying to think positively, but I just can't help but think that this may be a bad idea.

My biggest question is what if the vomiting starts again? She'll stop wanting to eat again, we'll have to guess whether or not we should re-dose her meds if she pukes them up, we'll have to go through the trial & error of what rate/intervals to feed her & how much to feed with the pump or bolus with a syringe, I'll be doing 235 loads of laundry a day again, our house will smell like Peptamen puke, which I can guarantee you is worse than Neocate puke, and I'll have to start carrying barf bags in my purse again. Or she'll surprise us and tolerate it just fine. Only time will tell. So for the next 2 weeks, these are the thoughts that will be keeping me awake at night. :)

I also asked the nurse about the possibility of doing a separate J tube so she'd have 2 tube sites. (Obviously we don't WANT to subject her to another surgery & recovery and have another tube site to take care of, but if having the GJ insterted through the pylorus may have caused the problems she's having, then maybe having the tubes be separate would help.) The nurse said that having the separate tubes would probably not cause the same problems she's been having but again, that's more permanent (like going from the NG to the G) and that it would be a step in the wrong direction for us. I agree with that, but if we do the G tube for a while and the vomiting resumes and it doesn't go well, then I might just push for separate tubes. It doesn't mean we would have to use the J tube all the time and it doesn't mean we wouldn't still be working towards the goal of weaning her off of the J tube for all her feeds, but it would still give us the security of being able to get her meds in and have them stay in, and the security of being able to keep her hydrated if there's a problem. If she just has the G tube and gets sick or something, even putting pedialyte through the G tube wouldn't keep her hydrated if she throws it up. Well, I'm getting ahead of myself again, but I guess that just gives you an idea of what it's like inside the mind of a tubie mom. :)

Now for something exciting. Last night the boys went to Fathers & Sons outing for church so the girls and I went shopping and then went out to dinner. We went to a very strange restaurant where the food is a fusion of Mexican & Asian. It's good, but interesting all the same. Anyway, Raya was sitting next to me in the high chair and kept pointing at our food and grunting/whining that she wanted some (she doesn't use words, just "uh! uh! uh!" while she reaches towards what she wants). I dipped my fork in the refried/pureed black beans and then gave her a taste. She ended up letting me put about 15-20 little tiny tastes in her mouth for a total of about 1/4-1/2 tsp before she finally gagged & had enough. It was nice to see her "like" the taste of something. I realized when we got home that I needed to take off the drainage bag & flush the G port because the beans were kind of clogging the port from draining gastric fluid. :) She's making progress but still has such a very long way to go. I had always thought that our biggest obstacle was Raya finding the desire to eat but now I'm realizing that there's a huge difference between wanting to eat and being able to eat. The ability and desire to eat enough calories to maintain weight gain is a whole other ballpark! SO yeah, we've got a long way to go but if nothing else, we know where we can find black beans that she'll eat a half teaspoon of. :)


  1. Goodness, pair the mind of a tubie mom with the mind of a heart mom and we'd be a serious force to be reckoned with. Or have spent seriously too much time thinking about all the what ifs/what thens/what nows. Good thing there's only 24 hours in a day.


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