We are going where???

Makayla has been junky for about a month now. She has went through two series of Antibiotics and still wasn't normal. I talked to her pediatrician on Friday afternoon and he spoke with our ENT which suggested we come in today. But with Makayla being junky and our nurse being off this weekend, Dennis and I got very little sleep. I probably suctioned Makayla 100 times per night.  We got the appointment scheduled for 2:00 this afternoon. Her ENT scoped her tracheostomy and nose. What we found was that at this time was a lot of secretions but not an infection. We discovered that she is still refluxing (even though she is on medicine for it) and she is aspirating either her food, or her stomach acid.  I thought with the nisson, we wouldn't have this problem anymore, since this was the reason we were hospitalized, had surgery, and ended up with the tracheostomy back in July. My poor baby girl. We are having a swallow study and a G-Tube study done on Wednesday to confirm what the scope found. We also have an antibiotic on hold so if her secretions start to get darker green again, we will have some help. This will be a more long term antibiotic and it is used very often in patients with Cystic Fibrosis. So now comes the BIG news:

We are going to Cincinnati. The Cincinnati hospital is the best for people with CHARGE syndrome. Since her surgeries are fast approaching, it was suggested that this would be the best place for her. Being in a place that doctors communicate with each other, instead of me doing the communicating, a place that doctors are knowledgable about what is best for our daughter instead of the research being done by myself and all appointments will be on the same day every month! I will always want to know what is going on but I don't want to have to make all the important decisions for her. I'm her mom, I have emotions. I will never be the one holding the knife but when I make the decisions it feels an awful lot like it. We don't know for sure yet when it is going to happen. Makayla's medical information is being sent to them in the next couple of days. What I am excited about is that our ENT has agreed to do her tracheal reconstruction and fly to Cincinnati to do it!!! He also studied with a lot of the doctors there which lets me know he can help me pick the best ones. 

I am nervous. Today was a huge bomb dropped on us, all the way around. I have no idea how we will get to Cincinnati, how our other two children will be taken care of, how we will afford hotels and bills here at home. Please help us by praying for a solution so that we won't have to stress out about all of these things and we will be able to be parents to Makayla and be there to hold her hand when the surgeries are done. Also Dennis and I are so tired and emotional. I think the weight of everything has finally gotten to us.