I had a little chat with the nurse on Friday afternoon. I figured that there was probably still something going on even though they hadn't filled me in on it yet so I left her a message. I also needed to ask her how long we're supposed to continue with the ulcer medication. A couple hours later I called back & left her a new voice mail: "I'm calling to withdraw my question about the carafate, there's blood coming out of her G tube again/still. Call me." She called me back a few minutes later. :)
She said that the doctor doesn't see any good reason why the radiologist couldn't get the GJ tube in. She knew there was a possibility that she may get a GJ in the future when she & the surgeon placed the G tube, so I can't imagine that they would have put it in a location that would make a GJ impossible to put in. Hopefully we'll have answers and an action plan for that in the next week. We need NEED to do something different with this kid because I've had just about enough of her throwing up. If you think about the last time your child had the flu and vomited his/her little guts out and there was nothing you could do but rub their back, clean up the puddle & change their yucky clothes afterward, that's what we do 3 times a day here. Sometimes everything in her stomach just comes flying out and then she's done & happy and goes back to whatever she was doing. Other times, she starts to cry because she doesn't feel good, then she screams & cries the whole time she's throwing up and then feels better a few mintes later. The worst ones are when she throws up until her stomach is empty and then just keeps going. Her entire head will turn bright red, strange noises come out of her and she can't move or breathe until her stomach relaxes. Sometimes that goes on for several minutes at a time. So when I say that I'm tired of her throwing up, only part of that is because of the loads upon loads of laundry it generates.
Anyway, I also talked to the nurse about Raya going to Ohio for testing. Raya's doctor talked to a doctor at the children's hospital in Columbus and he wants to evaluate Raya. They study motility disorders there and are able to do highly specialized testing that the hospitals here aren't equipped for. He also agrees that Raya would benefit from a GJ tube.
Before we can go, they need to see her complete medical records including films from all the scans she's had done. Then there's the issue of clearing everything with the insurance company...SO it might still be a while before we go, if we go, but it at least makes me feel like we're doing something.
So that's it for now. :)
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