12/6 Update (Hey, that's my lucky number, 126): The Unluckiest Possible Fucking Update Ever (Keep hope alive!!)

Sorry about the annoying headline... Sorry if you thought this blog was all about good news.... Here goes...

I've been sending the following email around to doctors that I've been in contact with. Here's the latest. Btw, if you thought this was just about saving toes and fingertips, you're going to be in for a pretty big shock.... still, we're looking for help from all avenues. We'll do anything (ANYTHING) to save her hands... if she can save a foot, that'd be a miracle. So read the letter... its right there...

Thank you for your help so far concerning Jamie's medical situation.
We have some updates, and, apparently a new and accelerated time
frame. As such, we would appreciate hearing from you as soon as
possible (though we recognize that it is Saturday night, so if you can
respond by Monday's close of business, it should be ok).

Jamie's plastic surgeon at Seton visited Jamie for the second time today and this time he did some cutting and tests to determine how deep the necrotic
tissue lies. (The first time he visited, he had only seen pictures of
Jamie's hands and feet; after that visit, he told us that Jamie would
lose both hands and have two BK apumtations)). Today, he cut into her
palm and her leg too in order to determine the status of Jamie's
tissue. [ED NOTE: Don't worry, she didn't feel it... lots of pain meds... or no pain receptacles there... ugh] He found some blood in addition to liquefied muscle and some water-blister-type fluid. (I observed his tests). His
recommendation is, again, that we have two BK amputations and the
removal of all of her fingers/thumbs and a portion of her palms (all
for both hands).

After making these large (probably half-centimeter deep, two centimeter width/length), he recommended that we proceed with surgeries on her hands and feet in order to remove the dead tissue AND that we have the surgery on or before this Wednesday in order to avoid/prevent any future infection. He says, and we agree, that we're now hoping to have only below the knee amputations (instead of above the knee). We want to avoid above the amputation at all costs. We also noticed that below the black tissue is live, pink tissue, for what its worth. This condition (pink tissue under black tissue that was cut off) was clear on some parts of her palms and her legs.... They didn't do this for every black spot, just a few areas.

Our concerns are these:

(1) with this new, accelerated deadline, it appears that we won't be
able to get as many opinions as we'd like. We wanted to physically
transport her to Dallas to have you and your team evaluating her
before we make some cuts. Is it possible for you or other partners of
yours to observe her in this short amount of time?

(2) we also want to make sure that other methods aren't going to be
overlooked - skin grafts, muscle transplants, etc. We feel like we are being
given the safe and conventional answer that would ordinarily apply to similar
cases; Jamie's is apparently very unusual, so we are afraid of being given
the traditional treatment when she could qualify for something more novel
or unusual.

(3) We're also a bit bothered by this new accelerated deadline. Earlier,
we had all the time in the world to wait for demarcation to occur. We've been
told that there isn't much more good that can happen by waiting, but I'm
feeling like we don't have time to get other opinions about not having time...
Is the concern about infection as pressing as this doctor let's
on? Can we feasibly transfer her to another city without risking
further infection and/or sepsis?

I'm not certain about any other issues that I should be raising or
questions I should have, but you can only cut once and we're feeling a
bit rushed to make a decision and we're not entirely convinced that
this decision is the correct one. As always, we appreciate any
information that could assist us in this critical and life-altering
decision. Please do not hesitate to contact either me by email
(schanbaum@gmail.com) or 2142268090. You can also contact my mom,
patsy, at 5124686654.

Best regards and thanks for everything.
Nick Schanbaum
---------------------

So that's where we're at now. At some point over the past few days, our worst case scenario became our likely result. We're exploring every option and will go to any and all lengths in order give Jamie the best possible functionality and require the least amount of amputation.

And, since you're probably wondering, she's doing really well mentally and truly enjoys the visitors she's been getting. For some reason, she's handling all of these waves of shitty news better than I could ever imagine.

Keep your fingers crossed that this one doctor is wrong... or you can pray that we'll find a doctor who can offer us some sort of hope... some treatment that is unusual but promising... we're looking for a miracle, but we'll take an unlikelihood at this point.... I'd settle for an improbability.

We (and I) need to be even stronger, more resolute, than Jamie... and she's been impossibly strong. I've got my work cut out for me in that regard, but Jamie is an amazing person and is doing amazing. Lets keep hope alive and see if we can find a miracle.
-Nick