So, like I posted on FB a few days ago, Noah has been having a really rough time tolerating feeds. Lots more vomiting, gagging with just a few oz of food going in, not digesting...... So after struggling with feeds for almost a wk and a weight loss of a pound I called into his Feeding Clinic at Cincy to see what they would like to do at this point. (yes I know it's one pound he has lost, to most kids, this isn't an issue, well Noah has not gained anything for over a 1.5 yrs..he will go up a a few ounces then back down...so it always bottoms out around 35-36lbs...which is still an ok weight for his height, but him not gaining anything in so long is becoming a problem.)
So, they call me this afternoon and we talk about it, and it was pretty much pointless. She asks about the pericatian, which is a med to help with vomiting and gastric stretching, making stomach able to handle more food. Well we have trialed this 3 times in the past 2 years, it's never worked for him. He continues to vomit the same amount we always trail ab 5-6 weeks and we cycle it, on 3 weeks off one. Well, she wanted to do it again, I told her we have tried in the past and with no results, why would this time be magical? Ok so I didn't it say it so facetiously, but that was my question, she said maybe he wasn't on it long enough. Well, I am calling BS on that bc she was the one that told me i wold notice a difference within 2 wks, of him being on it, well we did 5.5 wks. So, yea. I am not doing it again.
She had NO suggestions on feeds, seriously none, I told her I was hooking him up at night since he was puking so much during the day and we aren't getting in near enough cals, hence his weightloss, and she goes, "ok good I like that, keep doing that." What the what? I am calling them for answers and she is saying you're doing great, keep it up" umm, If we were doing so well, he'd not be in this slump. seriously our 20 mins of a phone call produce NOTHING. Her only advice was to call back in 7 days and if he was still struggling then they could talk about maybe doing continuous feeds.Sigh. really.....I am so glad I called. {I am rolling my eyes so hard my head hurts.}
One thing she ALWAYS says that drives me bat shit crazy is: "Maybe he has a stomach bug." They say this every damn time, every time......So apparently Noah has had a ":Bug" for the past 4.5 yrs of his life. It's amazing really. smh...I told her he was fine, playing, laughing, going to school, he isn't sick! She then proccedes to say that kids w craptasic motility that it can take weeks to get back to normal with their digestion....ok, I get it, but he ISN'T SICK! If he were, I wouldn't have called bc I know this already! I am not a tubie/motility newbie here! I am sooooooooooo tired of "well, maybe he has a virus" BS. It's like their go to when they don't know what to do. I am gonna smack my head on the phone if she brings that crap up again.
Then for fun I tell her when I vent him hours later, he still has food left, clearly undigested. She tells me "well it's not all food, there can be ounces of stomach juices in there." ok, I get it, I know this, but I can tell when food is being broken down and not. when his food comes out looking like it did hours ago when I put it in, well, it's not digesting....Now, I know I don't own a white coat nor have a degree hanging on my wall, but I am going to go out on a limb here and say, it's not digesting. heres an example. He ate lunch at school at 12. We get home from carpool 340, {carpool ugh, whole other story} I vent him bc he gaggy, out roars 135mls of clearly his blend from 12. {He doesn't get water after lunch, bc it's not in his protocol and lord knows they can't deviate from the dr orders.} He got bloused 5.5oz at 12.....
Maybe she was having and off day, maybe she was in a bad mood, but I am not expecting her to make my kid magically better, I really am not, I just wanted something from them. What, I really don't know, maybe something more of a plan, maybe look at his chart prior to calling me to realize that yes all the meds she wanted to throw at him, that we already did those, some years ago. Noah's been seeing them since he was 8 months old, they know him.....but today they failed. Again, I don't know what I was really expecting...just something more.
So here we are, not tolerating feeds, only handling 4 oz before he starts gaggin and saying he is full, and crying when he sees the syringe. "don't feed me, my belly already full." It kinda really sucks.
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