Thursday, December 07, 2006

Oy.

Okay, so here's what I know thus far:

They went to the specialist in Shreveport, and he has referred them OUT, to an ENT practice in Baton Rouge (ear nose & throat). Seems utterly illogical to me, seeing as how the original description, via Earl K. Long, was as I stated to y'all at the very beginning --- BRAIN tumor, in addition to the outward facial tumor(s), pressing down on 8 of the 15 major nerve branches IN her brain, and involved in every single major blood vessel INSIDE THE BRAIN.

But now, all of a sudden, the specialist wants somebody ELSE to focus on the OUTER tumor, as if the brain tumor isn't as important. Susan is following his directives, at least until they hear something from the ENT group.

The Medicaid should kick in very soon, hopefully.

I'm still pushing the Tulane clinic, because I think that they would be able to offer far more options and better technology/specialization in Lee's disease. They have an entire CLINIC just for neurofibromatosis, which seems far more logical to me than this ENT thing.

It's all a clusterfuck right now. I'm hoping that we'll know enough after the ENT visit to finally commit to a plan of action for Lee, and that Lee will know then what she wants to do, and will actually follow through with it.

Y'all are beyond amazing, y'all are the reason that I still believe in doing these projects. I'm just so glad that I have so many wonderful people in my life who are willing to allow me to try and help people who really need it.

So.

I don't know as of today how much money we're going to need, with the Medicaid kicking-in, or if what's already accrued in the bank is enough or too much. If it isn't needed directly for the actual surger(ies), however many there may be at this point, it will most assuredly still be put to a good purpose in Lee's physical therapy and aftercare, which is generally exhorbitant, especially if it's not covered by the Medicaid. IF there is any money left over, I will refund it to you all in proportion to what was donated, or direct it to whatever charitable institution that y'all deem necessary. The checking account is still in Susan's name, so once we know what the next step will be, we will most certainly have a conversation as to where the rest of the money should go, if it is not needed to cover Lee's medical expenses.

Okay. So that's what I know as of this morning. And yes, it's very consternating, it's aggravating, but so is life. I just wish that I could hog-tie Susan to a chair and get ALL of the details out of her; most of our conversations are granted less time than it takes for her to hustle a carton of xmas decorations across the Fred's floor. Getting a straight answer out of Lee is like nailing Jell-O to a tree. Hopefully, by the time of my next post, I'll have much more definite information for all of you.

With the wonderful options that have been offered, from UAB to Tulane to people who have been willing to drive Lee cross-country to any hospital necessary, I've been so hopeful that Lee would be able to take advantage of the kindnesses and medical help offered. Please, do not think that we have cast these offers aside like so much junk mail. I've printed them all out for Susan and Lee, I just don't think that they've had time to properly consider those options in comparison to what is being offered here at home, or if they have, perhaps it is just a matter of real-life constraints that keeps them from responding.

Ironic, really, that communications would be so troublesome for me, but such is life, or at least MY life, it would appear.

Again, more news as it happens. Thank you all so much.

1 Comments:

At 10:53 AM, Blogger Anntichrist S. Coulter said...

The stalker of the above comment has been removed, because she can't take a fucking hint. I wonder if the Connecticut Attorney General actually follows-up on stalking complaints...

 

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