Ok so a lot of you have been wanting to know where we stand as far as transplant goes...Well to be truthful we really don't know at this point. We are still fighting with the hospital and insurance company to come up with a solution. We have appealed the $300,000 cap for transplants, to no avail...they refuse to raise it. I mean honestly three hundred thousand for a transplant come on who are they kidding? That was nothing when it came to Marshall's transplant and well I guess the hospital doesn't want to get stuck with a 4.2 million dollar bill again....Oh well maybe they shouldn't charge so much for necessary procedures!!! Anyway the hospital is looking in to the Louisiana medicaid picking up some of the bill, not sure what is going to happen there. I have been so freaked out about this and after talking to the financial personnel at the hospital in Minnesota, she didn't leave me on a positive note stating that Medicaid just won't pay at an accurate rate....meaning that they probably won't cover enough for them to still accept her as a patient.
In desperation I emailed Dr. Wagner
I have heard from the financial people today they have yet to get in touch with Louisiana Medicaid. I tried to get Blue Cross to up their LM for transplants, only to be denied again. From talking to Beth in Minnesota, she doesn't think that LA Medicaid is going to cover the transplant. Or that our medicaid will not pay at accurate rates. Basically it looks like there is not an option for us, my question to you is where do we go? Do I need to start looking at doctors here in New Orleans? I know that Dr. Yu at Children's hospital had done FA patients before, But I am scared to death...I don't even know what kind of questions to ask them?
I haven't completely given up hope but I need to start preparing for something else, her counts are showing that a transplant will need to be done soon. I don't want to be needing a transplant and not have any idea of where to go?
Any advise that you can give me here would be of great help!
Thanks,
Kelly
His reply was:
Lets see how this works out. I'll talk to finance people. However, if we need to refer you elsewhere which I hope not, then I find you a place. Lets not give up yet. John
That helps a little bit to know that he will do what he can and then he will find us a place for transplant. I just trust him. He knows what doctors are going to work with him and who is not.
I know what his plea to the hospital will be, he is hired to do research in this disease and if the patients are unable to come to him, how can he do research!!!
I'm going to try for the next two weeks to not think about any of this. Tuesday is Mardi Gras and then Wed. I need to get all 5 of us packed so we can get out the door Thursday morning. We are driving. I didn't want to take a chance on putting Amelia on a plane. Besides we have more fun driving and it's not that far of a drive, and with the new car I could drive it cross country I love it so much!!!
I will probably be out of touch for two weeks. I am not sure if I will bring my laptop, besides who will have time for updating when we will have so much fun stuff to be doing. And once we board the ship our cell phones will be turned off till we get back to the port!
But when I do get back to update be prepared for lots and lots of pictures and for the first time I will get to use my new waterproof camera.
I sure hope I get over this cold/sinus infection before we head out the door on Wed.
Well I'm off to check on kids, they have been in their rooms for a while so I am glad I have had a little bit of peace and quiet for a little while, I know it won't last in this house.
The snow stopped it was coming down pretty good but the ground was way to wet for it to accumulate. I took some picture I'll put up later.
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