We got home on Sunday afternoon. They never did find any reason for the pain. In fact they think her motility is "great". ??? Now it hasn't been happening all the much recently but I've WATCHED this child bloat up with feeds. That's not normal! Maybe she was acting normal during the test, but I don't think that's conclusive enough to say she's completely normal. Ugh.
So we went home with a new formula, which has been a pain in the butt to get. They sent us home with a 3 day supply, which has lasted almost 5 days since she's not really tolerating this one any better. And we still don't have more. I ordered it from a pharmacy that takes WIC, but they didn't order it when they should have (called me 2 days later to verify) and now it won't be in until tuesday. We did find 17 cans at the Kroger pharmacy but our coupons are for 24 cans. I don't want to "waste" cans because they didn't have enough for an entire coupon. Our nurse called around and found a smaller, local pharmacy that has a customer that said she'd donate her extra cases to us. Whoo-hoo! I guess her child is on a different formula now. So that will hold us over until the order gets into the pharmacy.
Charlie's CP clinic appointment is on tuesday. I'm definitely going to bring up the issue to them. I'm so tired of this. I hate that she's in pain. And we keep fighting to feed her, as if putting a few lbs on her will make her all better. Even IF we get her to gain, she's still going to scream. Keeping her fed is not the only issue. I'm seriously at the point where I want to say, "to hell with it" and have them put in a line. My little girl deserves to live without pain.