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March 2, 2007

Uma Update

Hello amazing people:

I haven't sent out an Uma update in a couple of days because I've been so busy with the fundraising (there has been so much activity!) and I wish I had time right now to send out individual thank yous to each and every one of you because the response has been so overwhelming and generous and amazing. Thank you so much for your donations and for spreading the word. There is a list of all of the donors at theumafund.blogspot.com, please let me know if your name is missing from the list or if you want your spouse/partner listed with you, and I will make the corrections. We will definitely be able to pay for Uma's air ambulance to bring her home, and hopefully donations will keep coming in! There is so much good in this world and we've seen a lot of proof of that this week, so: thank you, thank you, thank you!

John sent out some thank yous to his email list as well, and in case you're not on his list, I'm going to pass his message along here:

EVERYONE,

WITH MY WHOLE HEART AND MY WHOLE SOUL I THANK YOU FOR
YOUR LOVE TODAY AND EVERY DAY, AND I THANK YOU FOR
YOUR DONATIONS. IN EVERY WAY, YOU HAVE MADE IT A
POSSIBILITY THAT UMA CAN GO HOME AGAIN. I CAN'T REPAY
YOU WITH ANYTHING BUT MY THANKS AND LOVE AND SO I GIVE
THEM COMPLETELY.

love and thanks,
john

Uma's friends Erica and Anna are both at the hospital with John right now, which is great. As far as Uma's health update goes, I'm going to copy and paste both of the updates that John sent out yesterday (below), but I'll start with a quick update of my own, since I talked to John this morning.

Uma has not had the shunt procedure yet, and we're not sure whether or not she's going to have it. Basically, they were scheduled to put the shunt in, but then one of the doctors in Uma's team of doctors decided that he didn't think she needed the shunt, and there isn't really a reason to rush the procedure, so they've decided to hold off on the shunt and watch her intercranial pressure for a few days and if things look good and her ventricles decrease in size, then they won't do the shunt. But if her pressure rises and the ventricles stay the same size, that would indicate that she will need the shunt, and they would then most likely do the procedure on Monday or Tuesday. So right now we are waiting. All of this is explained in John's emails below, but the emails are from yesterday and I just wanted to let you know that we're basically still in the same place today: waiting to find out whether or not she needs the shunt.

Uma still can't speak because of the damned tracheostomy (okay, it's a good tracheostomy because it allowed her to have the ventilator and breathe and all, but still, we think she's ready to breathe on her own and talk to us!) and we are hoping that they finish weaning her off of the ventilator soon, and start speaking again. I know that this simple act of being able to communicate will mean so much to her and will help her spirits immensely. It must be so freaking frustrating to be lying in that bed and not be able to talk. Especially because hospital time works completely differently than real world time. Minutes sometimes feel like hours. When we get the trach out and she's able to talk, it'll be huge. Huge!

But in the meantime, we need to keep visualizing Uma's continued progress and send her some good vibes and good thoughts. It's hard to be in California, away from her hospital bed. I just want to give her a big smile and tell her that she's going to get through this. But I was thinking, all of the energy that we have collectively put into the universe for Uma--all of the prayers, all of the good thoughts, all of the visualizations--they have definitely helped, they have definitely manifested themselves in change. There's no other way to explain some of the medical changes that have happened. When Uma had her stroke on Day 14, the doctors said it was so bad that they gave her a 20% chance of surviving the stroke. Then, a few days later, her neurological signs were so good that they said that while she definitely had a stroke, it wasn't as bad as they thought it was... and now her improvements are so good and they don't see any damage in the area where the stroke occurred and they are saying that maybe she didn't have a stroke at all. However the doctors want to explain it, I don't see any other explanation other than THAT IS A MIRACLE. So let's keep up all of our visualizations and good thoughts and prayers. Because they work.

Also, so many strangers have emailed me after having read about Uma on my blog, and so many people have been moved by her story and all of the support, including an awesome man named David Nathan Schwartz, who is himself a survivor of brain trauma. He has a one-man show called My Brain Tumor: A Mind Expanding Comedy, that's running at the Elephant Lab Theatre in Hollywood and was supposed to close on Saturday, but he's graciously offered to extend the run to Sunday night and Sunday night's performance (at 7pm) will be a benefit for Uma, all proceeds going to help pay for her medical expenses. David doesn't know Uma, he doesn't know John, he doesn't know me--he just wants to help out. After the performance, there will be lots of wine so we can get all boozy and I'm probably going to make a little speech about Uma and talk about her progress, and if you're available on Sunday night and want to see an awesome play and be in a room full of people hoping and praying for Uma, come on out. Tickets are thirty bucks and can be purchased here:

Uma Fest!

Okay, much love to all of you, and here are John's updates from yesterday:

UPDATE #1, sent March 1, 2007, at 7am:
good morning everyone,

i was too exhausted to write anything last night.
apparently there are limits to how much anxiety,
wating, prayer, home-sickness, and helplessness a
person can tolerate in a month.

uma is ok. they did not perform the shunt procedure
yesterday. there was a discrepancy between the head
of neurosurgery and the cheif resident about the size
of uma's ventricles. so they waited and did another ct
scan yesterday afternoon. relative to the previous
morning's ct scan there was no change. what they were
hoping for was a reduction in the ventricle size which
would indicate that her brain is processing more of
the cervical spinal fluid. so.....we wait for them to
decide what they're going to do.

the list of frustrations grows longer - i spent the
better part of 4 hours on the cell phone yesterday
with vaious "agencies' re: her medi-cal. each person i
spoke with had an opinion which differed from the last
person i spoke with. i was also informed by the case
worker here in ny that, now that uma has been here for
30 days, she is considered a ny resident and therefor
the hospital will file a medicAID application for her
to make sure THEY get paid for their services and
that, maybe, she would just do her acute in-patient
rehab here at st. vincents. prior to this conversation
i was informed by cedars sinai that, though the head
of neurovascular surgery has agreed to take her,
unless medi-cal is approved (which can take up to 90
days), they won't receive her.

there is only one feeling worse than seeing uma
immobile in that bed for a month and that's the idea
that we would not be able to go home for a long, long
time. the despair i felt was different than the first
part of this month when she wasn't even conscious. she
is just lying there, hurting, actually hurting now
from a month of pneumonia, catherization,
constipation, immobility, and questionable cranial
health. i've reached a limit here and i would greatly
appreciate your thoughts and prayers for me as well.

uma's friend, anna, came yesterday and stays 'til
friday. erica arrives again today and stays 'til
saturday, i think. i have to be out of the borrowed
apartment by tomorrow night but i think i've found a
place to stay with uma's friend, adam.

as soon as i'm done with this email i'll call a man
that our friend dan knows about his private leer jet
which he rents to university of pittsburgh hospital as
a flying icu. he said he'd be able to work our "fuel
as cost" and maybe some other discounts for us. (if we
have to fly closer to sea leverl due to pressure on
her head, fuel-at-cost will be a substantial gift!)

i hesitate to say any news about uma regarding her
shunt because i just don't know what they'll do. there
has been conflicting information about that for the
last four days and i think we/i just need to be in a
season of prayer and waiting and, hopefully, peace
about it.

suffice to say that, at some point, hopefully soon,
they will either perform the shunt or declare her
shunt-free and then continue on with weaning her from
the ventilator (she continues to make progress there)
and the tracheostomy and get her out of icu and moving
a bit more. the more mobile she is (even a wheelchair
at time during the day) the better off everything will
be for her in terms of nutrition, elimination, and
infection.

yesterday i was telling her about the plane ride and
how it's going to cost about $20k or so....she started
to cry and i said, 'no, no it's ok....listen! erik set
up a fundraising site and in two days we've received
over $15k!.....from over 200 people, some of whom we
don't even know!....and lot's of people (i named some
of them) have gone on hikes around the l.a. mountains
and, when they got to the top, the yelled your name
and for you to get well and come home soon!" so then
she cried some more.....i cried too but, really, i
think she needed to cry. she seemed to be in a better
frame of mind after that - smiling a bit more and
laughing sometime with anna and me. it seemed like
her spirits rose a little yesterday which was nice.
she and i had what i believe were some really nice
moments together about 45 minutes before the close of
visiting hours. she fell asleep listening to brahms
and samuel barber and a quietly left the room.

that's a nice thing to pray for, i think.....for her
to quietly leave that room too. you all know most of
the particulars - her health issues, paperwork issues,
transportation and a new facillity in l.a. - so,
please, from my heart i'm asking you to pray, in you
own way, for her to quietly leave new york just as
soon as is humanly (or otherwise) possible.

and, for me, pray for patience.

love,
john

and here's UPDATE #2, sent March 1, 2007, at 1:18 pm:
hello,

i went in and told uma the news - that in five to
seven days we would probably be on a plane to l.a.
this seemed to brighten up her spirits.

her friend erica just arrived so now erica and anna
are here. i may take some time now that they can both
alternate visits (and alone time for uma, too) just to
take a nap or a walk.

the doctors have decided to wait, probably over the
weekend, to give her the best chance of not needing
the shunt. they will monitor her neurological signs,
looking especially for lethargy or reduced
movement/response, and, take another ct scan on sunday
nite/monday day,review that and make a decision. it
would be great if she didn't need it but it's not the
end of the world if she does. if she does need the
shunt, they can do that on monday or tuesday and,
barring any complications, she would be ready to go 2
to 3 days after surgery.

i feel good. i know the road is long but i can see the
road down there at the end of this tunnel now. god is
good. you all are good. uma is good and getting
better.

i won't stop writing to you or asking you for prayers.
.....for instance......still there is pnuemonia,
blood, weakness/paralysis on her right side,
possibility of stroke/shunt/rebleed, rehab,
depression, etc.

but, for now, i feel a huge sense of gratitude and
relief and i thank you and god and the doctors here
and uma for all the effort.

much love,
john

Posted by bonnie at March 2, 2007 11:40 AM

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Posted by: Beth at March 4, 2007 5:48 AM

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