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February 16, 2007

Uma Update

The latest from Erik.

Thursday was a rockstar day. Uma is making progress. Lots of progress. She is not out of the woods yet--we still need to visualize the rest of the blood draining from her brain area, we still want the swelling in her brain to go down, we still want her to start talking, to smile, to laugh, to fully Wake Up!--but she is definitely moving in the right direction.

John and Nithi and I had been saying all day that we felt like Uma was being more responsive than usual--that she was moving more and that she was focusing her eyes more--and then when the doctor brought us out into the hall for the day's update, that's the very first thing he said to us: "she's more responsive today." It's always nice to hear the doctors affirm something you hope and believe (and know). The second thing the doctor said was that Uma isn't following his commands yet (emphasis on the word "yet"). I like to think that she's just being stubborn because she's not the type of woman to really follow any random dude's "commands." I'll have to remember to tell her that Dr. Herschfield is a pretty cool guy.

They haven't done another CAT Scan yet (the next CAT Scan is scheduled for sometime today), but they assume that the edema (I'm not sure if that's how you spell it or not) is the same as it was the previous day ("edema" is the swelling in her brain) (when the doctor first used the word "edema," we were all like, "um, huh?" but we didn't ask him what it meant until he'd used the word about ten times and then we all felt a lot better listening to him talk because we suddenly understood what he was saying), which is to say: swollen but stable and not swelling any more. The fact that the edema isn't getting worse is definitely a good thing. But we want that swelling to fucking go away, so let's keep visualizing the swelling going down and the tissues in that part of her brain reforming and coming back to life. There's a chance that the swollen part of Uma's brain is dead, but since she's young there's also a good chance that the rest of her brain can compensate for a little bit of dead brain. And hey, anything is still possible at this point, so there's also a chance that the swollen part of her brain is still alive and let's keep visualizing THAT too. (Life is filled with possibilities--that's one of the things that I'm really starting to learn from all of this--sure, life can suck and your loved ones can get brain aneurysms and be in comas and all, but nothing is freaking impossible. Uma proves that simple fact every single day.)

It was mostly just the three of us at the hospital--John, Uma's dad Nithi, and me--Jason came by for a while too--and we all got to spend a lot of time alone with Uma. When I was in there with her, we held hands for about thirty minutes. Which is totally something I'm going to make fun of her for when she's all better because she is so not the hand-holding type. At least, not with me. And I think that our thirty-minute hand holding session today might have been the longest amount of time we've ever touched each other in all of the years we've been friends. At one point I asked Uma, "Is this okay? Do you want to let go of my hand?" And then she squeezed my hand even tighter. It was a definite response, a definite "no, I do not want to let go of your hand." And her eyes are much more focused today, which is really wonderful. Earlier in the week, when she first started opening her eyes, they didn't really seem to focus on anything, but now you can tell that she's looking at you. Now you can really see Uma there.

Uma's left wrist is restrained to the bed so that she doesn't reach up and pull out any of her tubes and at one point while we were standing there, holding hands, I noticed that Uma was staring at her wrist restraint. And this wasn't an idle stare, this stare was like: "why the fuck am I wearing a wrist restraint???" And so I asked Nancy the nurse (my favorite nurse, the one who yells really loud) if Uma had to wear the restraint and Nancy yelled to Uma: "DO YOU WANT ME TO TAKE IT OFF, UMA!?!?" Uma squeezed my hand tight and I told Nancy that was a yes. So then Nancy yelled out: "OKAY, UMA, BUT ONLY IF YOU PROMISE NOT TO PULL OUT ANY OF YOUR TUBES, OKAY?!?!?" Uma squeezed my hand tight again and I told Nancy, "she promises." So then Nancy loosened the restraint and Uma definitely appeared relieved. She looked tired and I told her it was okay to take a nap if she wanted to because we'd all still be waiting for her when she woke up. Uma closed her eyes for a few minutes, but then she opened them up again--she never closes them for very long because I think she wants to know what's going on around her.

At one point, I saw Uma move her right hand up and over several inches until it was resting on her stomach. This is HUGE. It may sound like a little thing, but I swear to you it is something to celebrate. The right side of her body is the side of her body that was affected by the aneurysm and this was the biggest movement I've seen her right hand make. All of these little big moments give me more and more hope, and they should give you more and more hope too. Uma is feeling all of our love, all of our support, all of our prayers, our visualizations. Our little acts of anarchy and visualization. Our wicked dance moves. They're all reaching her in that hospital bed and they're making her stronger. So let's keep it up!

A couple things you can do today (or tomorrow) (or the next day) to help keep Uma at the forefront of your thoughts:

(1) Share one of your favorite Uma anecdotes in the comments section of TeamUma.Blogspot.com.

(2) Go to 2220 Beverly Blvd. in Silverlake, where the fine folks of the Bootleg Theater have started up an Uma Prayer Wall--I think it's the main wall right outside the theater, there's a big green heart in the center of the wall so you shouldn't be able to miss it--and spread some Uma love with your sharpie. Consider it guilt-free vandalism.


Here's John's email update from Thursday:


there has been a different answer today than two days
ago. inexplicably, uma has begun opening her eyes and
moving her limbs (even on the right side) more than i
have seen since i saw her at our hotel on jan.31st.
when she hears your voice she looks at you. she
reaches for the rail of the bed with her left hand.
she reaches her left hand up to look at it. she raises
her eyebrows. her left leg moves all the time. i saw
her right hand (remember, this aneurysm/stroke
affected the left side of her brain which controls the
right side of her body) move at least five times today
and once, when i was rubbing lotion on her right arm,
she very briskly pulled it back from me.

she looks very irritated whenever i use the suction
tool to clear her mouth. (how very uma!) and she
routinely squeezes you hand with her left.

the ventriculostomy continues to drain more and more
clearly. it has a yellow tinge to it now (as opposed
to red) which indicates the continued breakdown of the
excess blood from the aneurysm. if this doesn't clear
up as soon as they'd like, she will be fitted with a
permanent shunt which would draw the blood from her
cranium to her abdomen.

she is much more relaxed and responsive today and her
dr. said that he is much more optimistic than he was
two days ago. her breathing is even and slow now -
she's not fighting it today. when i asked him again
about the angioplasty he said that many blood vessels
were reopened and that, in fact, there is a
possibility that the swelling is due to the re
infusion of blood in those areas.

tomorrow is the next catscan - this would correspond
to about a 72 hour period after the stroke. of course
we will look very much forward to another 'different'
answer then as well.

one of the last things i did tonight, after having
lots of time alone with her today (!), was catch the
focus in her eyes and i just smiled so big! you know
when you can be looking at someone's eyes but see
their whole face, too? and you feel there is some
connection there? that's what i felt and the left side
of her mouth rose up and her eyes crinkled ever so
slightly. (this mouth motion differed markedly from
the wince i saw yesterday - she was relaxed). wherever
she is in her beautiful but horribly beat up brain, i
think there was a warmth that was given and received
on a very basic human level.

a rehabilitation person came in for the first time
today to measure her for a splint for her right arm
which will provide passive resistance to it for
awhile. she hasn't been moving it that much and they
want to get started on that.

so - yesterday i felt like a ghost. i asked you for
your help and i am so grateful for all the emails and
calls i got today. i got help and so did uma. and it's
so nice to give you all some good news.

we've all been praying so hard and sending her so much
love (strangers email me to tell me they have yelled
for uma to 'wake up!') and i believe its important to
really celebrate the good news. it's a brave thing to
do when you think about it because tomorrow could be
bad news again. but still.....if you CAN smile, you
SHOULD! please have good smile for our girl tonight.
she's so brave and is working so hard against this.

i want to tell you that i truly think she's on a very
long road with all of this, but that she is not alone.
we are all with her however long it will be. to think
that she is out of danger is not wise right now. to
know, in all of our hearts, that she is doing better
is very wise. just before i left tonight i heard the
nurse say to the doctor something about her
intercranial pressure being up and they began working
on it.

we want her swelling and intercranial pressure to have
gone down
we want her awareness, her uma-ness to emerge as soon
as it can, specifically that she can, very soon,
follow a simple command and breathe on her own.
we want her to be able to avoid a permanent shunt.
we want no more stroke, no more vasospasm
we want no divisiveness against all of the bonds she
has chosen in life.

however loudly or boldly you pray for these things,
give a prayer of thanks just as loud, becaus this IS
the direction we want her to go in.

reading your emails and feeling all the love and
prayer and support in so many different ways....AND.
seeing uma the way she was today has made me feel like
a brand new copper-top battery. in some way, i can't
wait to see what she'll do tomorrow.

all my love and gratitude,



Okay, time for bed. Lots of love to everyone,


(Previous updates are here, here, here, here, here, and here.)

Posted by bonnie at February 16, 2007 8:58 AM

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Hey Bonnie...it's Beth. I changed my blog and email. :)

This is GREAT news!! Brain stuff freaks me out...understandably since my best friend when I was 4 had a brain tumor and a blood clot developed around it and burst...and he died. It's good to hear stories of people who seem to be making it!

Posted by: Beth at February 16, 2007 7:08 PM

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