Tummy Troubles and Temper Tantrums

Quinn is having a hard time with her stomach again. The way it has been since last month, is we give her multiple small meals throughout the day by mouth and then feed her through the J at 50 ML / hr overnight (2 cans). This has been working out for us. some days we have an issue, but it's resolved within 24 hours usually. But this past week has been TERRIBLE!!! Ok, maybe not THAT bad, we are still at home afterall, but it's the behaviors that i'm having an issue with.

It's obvious when Quinn's stomach and intestines are not working as well as they should be. She gets very bloated, very tired, very cranky and she has issues pooping. I have been having to wake up and turn off her feed because at night, she wakes crying about her stomach hurting her. OR wake in the morning with the christmas tree all pushed out and all her stomach contents and bile in a pile on the bed. She tells me all day long that she needs to be vented, that she ate too much and that her button is itchy. This causes it to get irritated because she won't stop messing with it. The very funny weird and sucky thing about this is that she acts like she is starving all the time, usually only when her stomach is messing up! And this is soooo AGGRAVATING for me because YES, i want to feed my skinny child who thinks she is starving. and Do I? Sometimes because she is hungry, but this causes even more issues! She eats, then bloats again and then the cycle continues over and over again. I try and give her t hings that are easy to digest, but I'm not even kidding, she is all in my face about food! i have to hide myself from eating in front of her! I am not starving her. I swear to goodness I am not starving her. Her stomach bloats, she gets in a lot of pain, she cries and it just seems that her entire health takes a bad turn when her motility goes to crap. and I just don't know what to do about it. Sometimes, i WISH i had a child who hated food. Or at least a child who only ate when she was hungry, but Quinn lives by food, she is motivated by food. she practically worships food. And yet, it is like a poison to her. I hate telling her no that she can't eat. I am the food Nazi. Mealtimes in my house are NOT fun, but not because I have to force my child to eat, but because I have to force her NOT to eat. And I don't know how to deal with this. We spent the first year trying to get her to tolerate foods and eat and drink enough to counteract the constant vomiting. The gtube was put in, not because she wasn't eating, but that she wasn't eating enough to sustain adequate health. The past couple years have been spent trying to keep her off the feeding tube so she can eat eat and eat some more and she DID eat, eat and eat some more, but she STILL needed the extra calories through the gtube. and now we are dealing with this slowing down of her intestines and she still just wants to eat and I think the drive to eat is even stronger than ever and I have to tell her no.Who tells their skinny, underweight, child that they cannot eat?

These behaviors surround around food. Anything that has anything to do with food, Quinn involves herself in. She has even gotten to the point of coming up to me in this cute little puppy dog eyes and this cute little mini mouse voice and says, "mommy, do you still love me?" and  I say "of course, sweetie, i will always love you." she says "well then, could you get me a snack?".... This was cute and worked the first couple of times, but now she does it EVERY DAY, MULTIPLE times a day! Now she comes up to me and says "mommy, do you still love me?" and I tell her, "yes i do, but I'm not getting you any food" and she runs off crying. I feel like all I'm doing every day is scolding her, all because she wants snacks and food and I can't give it to her! Literally, i give her a sandwich, she bloats up,  I tell her to wait for it to settle, she tells me 5 mins later that her tummy hurts and she needs to be vented. I vent her. then she says she feels better and wants to eat some more food. I tell her no, and that she has to wait. she goes and plays, 10 minutes later she is in my face about wanting food again and this cycle continues! it's like she is obsessed with wanting this food that her body doesn't allow her to tolerate! I give her motility meds around the clock! I give her mirilax every night she doesn't have diarrhea. I vent her, I hook her up to her j tube. this just doesn't stop! I don't understand this!!!!

The strangest thing about our predicament is that when she is NOT having issues with her stomach, she is NOT so obsessed and driven by food. How is it that when her body refuses to work properly, and when she is suppose to be full (according to all the textbooks, early satiety should be common), she is begging for more food! I want her to eat. I want to see her eat and be happy with the amount she eats. i want her to eat the amount her body lets her. I want her body to let her eat an amount that sustains proper nutrition. If i could just get one of these wants, I'd be happier. Right now, I'm frustrated. i'm frustrated because i don't understand how to punish a kid who throws fits because mommy said she can't eat. i'm frustrated because I can't eat in peace without my skinny child begging me for pieces. i'm frustrated because I can't go to a Bar B Que or restaurant without coming home having to deal with her huge stomach ache. I'm frustrated with myself because sometimes, I feel that just letting her eat, and be in pain is better than having to deal with a temper-tantrum-screaming 4 year old at that one moment in time. i'm even more frustrated because her stomach motility is entirely inconsistent, which makes for dealing with her hunger even harder. One week, she can eat 3 meals and 3 snacks, one week, she can't even handle one meal.

Every time I am invited for dinner, I seriously hesitate because I just know ppl will want to feed Quinn, Quinn will take advantage of this and other ppl don't understand that this tiny child shouldn't eat so much. I literally MAKE my family and friends touch Quinn's stomach to see that I am not joking around about this. When Quinn's motility is bad, Her stomach gets rock hard. THEY don't always have to hear about how she complains, bout the cramps, about how she will be walking and just double over in pain from her stomach. about how she cries out because her "butt" hurts her. They don't have to wake up to beeping alarms or wash sheets at 3 am because there was too much pressure in her stomach and so all this bile and puke leaks out. They don't have to wonder if seizures and lack of oxygen is because of how much she might have eaten this day. At least not always.

So, for right now, at this very moment, since I am unsure of HOW to deal with this, since her stomach is obviously acting up, starting tomorrow, I'm putting her on only J tube feeds and liquids throughout the day for one week and continuous oxygen to see how much better we can get this situation under control. and if she does well, that's how i'm gonna keep it, for my sanity and for hers. (maybe, I honestly can't stand not feeding my child. If i wanted this job any easier, I'd probably just keep her completely NPO for a long period of time, but I want her to be able to eat.) Joe, my boyfriend, is amazing. These kinds of decisions were really hard for me to make on my own because I always feared if I was truly making the right decision. Having Joe around, someone who sees what I see, someone who understands my frustration, who can take a little of the weight, someone to make suggestions and come up with a plan of action for the coming week, that matters. That matters a lot. So Joe, if you are reading this, THANK YOU!