Bad news but who cares?

Okay maybe I care a little but just a little. Many of you know that Lila's primary insurance through the wonder of our unethical, incompetent health care system does not pay for any of her lung or breathing issues. She is covered by SSI disability which gives her KY medicaid. We were hopeful, after speaking with our case manager, indeed we were banking on medicaid paying between 15% - 30% of the costs of this trip. We found out today that the claim was denied. We can appeal and we will. And I think we have a pretty good chance. The doctor who looked at it said that he felt much of what they did could have been done here. Perhaps that's true. But it wasn't. We've struggled with this for nearly two years and no doctor was able to help the way they did. Ben and I said the same to each other that our only negative feeling amidst all the positive of this experience was that it seemed like some doctor here should have been able to do some of what they did. And in the end medicaid is going to save on hospital bills from this program. But that's logic and logic doesn't always seem to enter into the decisions of government agencies.

But I feel okay. We'll appeal. And really it doesn't change how I feel. I said it in the last post - I would have done anything to get her to where she is right now. Whether we get the help we were hoping for from medicaid makes no difference in my joy at how well she is doing.

All right. So back to some other things that we learned in Denver. We learned that her reflux is a very big problem in her asthma. She was on medicine for her reflux when they did the test to see how her reflux was and it was still really bad. Reflux makes asthma worse in two ways. One way is that as the reflux comes up, it irritates the nerves in the esophagus and the nerves in the lungs and trachea become irritated as well in a sympathetic response. The other way is that when reflux is bad enough which hers is, it can come up far enough to be aspirated into the lungs which also causes trouble. So they doubled her reflux medicine and surgery might be necessary in the future.

Also, a bigger deal to me, is that they figured out why she was passing out. It was connected to the reflux making her breathing bad. Evidently when your reflux is as bad as Lila's is, it can come up and actually make your trachea spasm, cutting off your air supply and making you pass out. I won't bore you with all the ways the symptoms match and how they figured it out exactly, but it fits precisely what was happening with Lila. It is so good to know and understand why that part of it was happening.

We have some tools besides the medicine for helping with her reflux. We will also be followed by a GI doctor who will help us keep it under control.

That's more of what we took away. I'll finish the wrap up in a day or two. I wish that I could find a way to post Lila's happiness at being able to enjoy being outside on the internet so you all could share in it and feel good about it. I hope that you will a little bit anyway. May peace be with you all.