He told us "she is your daughter. You have to be her advocate. If they won't listen to you or aren't helping you, you need to go where they will. I've had many patients unhappy with Children's find great success in Madison." I was happy to hear we have another option! Madison is far and I have no clue how we'd pull it off, but it would be worth it if we need it. I truly don't think we will though.
He agreed that the medicine wasn't working very well for her. Today was her first full dose (she's been taking 1/2 dose for a week to get her body used to it). It was like she was high. She couldn't talk right, was spacey, wouldn't make eye contact, and wouldn't answer questions. She gets so so cranky she's so tired (which we DO NOT Need). She's started napping good again though! :) However, we've noticed no change in her appetite and if anything a decrease in appetite since she's so cranky and tired. He agreed it probably wasn't working and to give them a call even though it's only been a week on it. We are going on vacation this weekend and I don't think I will give it to her. Unless I'd like our entire family and my family to be miserable!
We told him what CHOW was saying about an NG tube and he basically said no way. She'd maybe tolerate it if she were 6 months old, or tolerate it for 2 days, but there was no way a 4 year old should have an NG tube. Woohoo! He said in his letters from CHOW they sounded like they wanted to do a G tube also, but to us, they sounded like the complete opposite. So we are optimistic. Our doc told us to be nice, but to just tell them what we wanted, and not ask them. Patrick will call them tomorrow to let them know we don't want to continue the meds and we want the G tube scheduled. I'm nervous but happy about the prospect of this coming to an end.
The doc said his patients that have feeding tubes have had good progress. Many have lost Autism symptoms, or caught up developmentally. It's VERY common for Failure to Thrive kids to be developmentally delayed because instead of calories going to their brain, every last calorie goes to survival. I am hopeful that with some nutrition, Evelyn will catch up and maybe all this "autism" stuff is related. I would be beyond thrilled!
He said we need to follow up in the mean time with Endocrine who may need to do testing and growth hormones. Not sure how I feel about growth hormones. I'd rather see if she grows on a tube first
So that's that. We are going up north this weekend for my birthday (i won't tell you how old I am going to be). I am happy to get away and the girls are excited. Hopefully the week or two after that we can get in for the G tube and get it all squared away and used to it before school starts in the fall.
Thanks everyone for your love and support. I finally feel like there is a light at the end of the tunnel and this is all finally coming to an end! We may never know why she doesn't gain but hopefully we can help her grow somehow
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