Tube Feeding Woes

It's getting very frustrating keeping Quinn practically NPO. It seems that the erithromycin isn't doing much more than just the Reglan was doing. though she is able to tolerate 35ml/hr without much problems, if i go any higher than that rate, we tend to fall into some minor issues with gut pain and bloat. Nothing like what it is though when i put her on just solids. I do tend to give her tiny amounts throughout the day if I can. Stuff like popsicles, lollipops, some juices and etc. But meal times for me have to be about the most heartbreaking. She looks at my food and practically begs for it and unfortunately for her, I usually have to say no or just give her a teeny tiny bite. but it's never enough. I've been dealing with some massive temper tantrums. I feel like we are rolling back into the terrible twos. I'm talking kicking, screaming fits. And it does usually involve meal times. She's sitting in the corner right now throwing another massive fit because she says to me as I'm preparing her tube feeding "I want real food!!! I don't want that!!!" and i have to tell her that I can give her a little tiny bit of real food, but we have to put the feeding tube on. And well, that started it. The massive fit has been going on for about 15 minutes. and she is punching her backpack saying "I DON'T LIKE IT!!!" No, she isn't like this every day, but days like this make me want to dig a nice deep hole in the dirt and bury that damn thing. I hope that one day, we can find some way to make it to where she can eat something.

I've been so sick for the past few days. finally, i'm feeling better, but i think i passed my illness down to Quinn. She has been sleeping all morning! like just falling asleep on the couch, which is so not like her, it can only mean one thing... the booger is fighting off something probably this virus. I hope it doesn't kick her butt.

She had her swallow function study done with the speech therapist. She feels that Quinn's swallow is good, however her oral motor function is not that great. She STILL pockets her food, thrusts her tongue, and lacks coordination in chewing. Even though I do nothing but work with her on her swallow when she CAN eat. But at this point in time, since she's unable to eat anyway, there's really no reason to worry about her oral motor function. if it sucks, it really doesn't matter. as long as she is safely swallowing liquids. So she is scheduled to have a Modified Barium Swallow Study on the 7th. i really HOPE that she is swallowing liquids safely as i would HATE HATE HATE to take the ONLY thing that we can give her away.