Excuse my while I vent....

OK back to fucking reality....
This is the letter that I just received from the financial coordinator from Fairview/University of Minnesota....

3/3/2010

Hello Kelly,

We spoke briefly on the phone on Monday and I wanted to do a follow up email with you regarding the insurance benefits for Amelia.
I spoke with Blue Cross of Louisiana Transplant Case Management this morning in regards to the limitations on the Transplant Specific Lifetime Maximum.
As you know under the Blue Cross policy there is a major medical lifetime maximum for Amelia of $5 million, however there is a Transplant Specific Lifetime Maximum of $300,000.00 which would include all of the transplant stay and post transplant stay for all services and all providers with UMMC, Fairview.
Unfortunately with the estimate for an Allogeneic BMT for Pediatrics, I would not be able to financially secure based on the $300,000.00 for Amelia.
Also you had informed me as well as the Transplant Case Manager at Blue Cross that the Employer Group is unwilling to allow for more transplant coverage.

I did contact the prior authorization dept. at Louisiana Medicaid today and they informed me for any non emergent out of state services to be approved medically, a Referring Dr. with Louisiana MA would have to write a letter of referral with supporting documentation for Amelia to come to UMMC, Fairview and this would then be reviewed by the Louisiana State Review Board to see if they would allow for coverage for Amelia to come to UMMC, Fairview for transplant services.
Unfortunately UMMC, Fairview and most likely all other providers of services (UMP, Home Health, Pharmacy) are not enrolled with Louisiana Medicaid and would not be able to bill for services rendered.

The medical approval and financial approval are two separate processes, so if Louisiana MA were to approve Amelia to come for BMT at UMMC, Fairview each provider of service would have to negotiate a contract with Louisiana MA for payment and every provider of service would have to approve the agreement with Louisiana MA.

I have sent an email to the BMT Coordinator and I will send the email to Dr. Wagner as well.
At this time I would not be able to financially approve any services for Amelia at UMMC, Fairview other then an initial consultation.

If you would like a letter regarding our financial requirements to secure an estimate for transplant for Amelia I can definitely put that together for you and send to you through email. Please let me know if you have further questions regarding this email.

Thank you,

Beth

Beth Beamish
University of Minnesota Medical Center, Fairview
Transplant Financial Case Manager

So in an effing nutshell....She is not going to transplant where the best doctors are...period.
We don't know when and we don't know where..what we know is that her counts keep falling and she needs a bone marrow transplant before something really serious happens!

Keep praying, please keep praying!!
I promise I will get back to the vacation, after all I will need the great memories to take me away from this hell of a night mare.

Well it was a very busy day today. Ty went to the doctor today and he is healing...We go back in three more weeks and he will probably schedule a MRI on the knee. The only problem with that is we might not get the best results considering he has metal in there and it might make it difficult to see what is going on in there. A big part of it will depend on him and how it feels when he starts to put weight on it. So the news there was rather encouraging. Friday we are off to talk to an attorney, we have been contacted three times from Allstate insurance (the lady's ins.)We just need to cover all our bases and will not settle anything till he is back at work!

After we finished with him at the doctor we headed to get Amelia from school. We have been putting off getting them done, not for any particular reason. Just the less you know the happier you seem...well so I thought that would be the case. Anyway off to get the blood. One stick was all it took with very little digging. I wasn't planning on getting her results till tomorrow, but our pediatrician called from her cell phone. That right there in its self is a heads up!!!! He counts were not the best at all. They all took a turn down ward!
Platelets 23 {normal should be well over 150}
White blood cells 3.5 {normal here is usually between 5-7}
Hemaglobin 9.5 {normal here is 12 and above}
ANC 770 {to fight infections it should be 1000}

I emailed the specialist in Minnesota, NOT THE NEWS I WANTED TO HEAR FROM HIM!!!
this was his reply:
" recheck in a week. Obiviously I hope this is temporary but if not up I might need to activate the donor search. I'll hold for now John"

My head is spinning once again my world is being turned upside down, not the words I wanted to read. I can't stop crying my stomach is in all kinds of knots, my heart aches. I know we have to do what we have to do, but I am scared to death here. I don't want to see my baby suffer and I don't want to loose her!!
I can't let her see me crying!

It's also been an emotional night as we have learned of another FA adult patient who lost her battle unexpectedly today. She will truly be missed in the FA community!

I will pull myself together and storm the heavens with lots and lots of prayers! I have to go for now I can barely see the keyboard. I will try to give a better info update tomorrow.