Hello friends, family, rockstars:
It's six in the freaking morning and I'm wide awake because (1) I still can't get used to New York time and (2) I've been thinking about how much Uma has improved this last week and it's exciting. Her daily neurological improvements are like our new caffeine. (Except everyone in the waiting room is still getting plenty of actual caffeine thanks to Adam Day and his daily hot chocolate runs.) (Thank you, Adam.) (Seriously, I was kind of already a hot chocolate addict before Uma's damned brain aneurysm, but now it's, like, nuts.) (Like, five hot chocolates a day doesn't sound unreasonable at all.) (And Adam, I think you've even gotten Nithi hooked on the stuff too.)
Okay, three things: (I'm gonna start with a thank you, then give you an Uma health update, and then I have a fun thing for you to do for Ums.)
1. First off, thank you to everyone who sent us suggestions and offered help re: UCLA and other rehab facilities in Southern California. We're still talking to people and following up on leads and figuring out exactly where Uma's going to do her neuro rehab, but I think we've made some headway and hopefully we'll know where Uma's going to be soon. John's really in charge of making all of the phone calls—I'm just sorting info--so if anyone has any more leads, let me know and I'll pass it on to John. We still have a little bit of time to figure out where her neuro rehab is going to be—it looks like Uma will stay here at the ICU in New York for at least another week, possibly two more weeks—but we'd like to get this matter settled soon. (Not just to get the NYC hospital caseworker off of our backs, but also because it'll be nice to know that we've gotten Uma into a fantastic facility close to friends and family—that'll be a relief.) Again, thank you for all of the legwork many of you have done for us.
2. Uma can't talk to us yet, but she is completely off of all sedatives and she is very alert. We are pretty certain (we continue to HOPE) that she is aware of what's happened to her (i.e. that she had a damned brain aneurysm burst) and of the fact that she's in a hospital in New York City. And she seems to remember us; the way she looks at each of us—John, Nithi, Erica, Marie, Adam, me—definitely shows signs of recognition. She will squeeze our hands in response to things; like, for instance, when we asked her if she wanted us to make a deal with the nurses to get a television wheeled into the ICU on Sunday so she could watch the Academy Awards, Uma's eyes opened really wide and she squeezed my hand tight, which I took as a definite "hell, yeah"—we've spoken to one of the nurses, Fernando, and he said that he would make it happen, so as long as he pulls through with the television set, Uma will be watching the Oscars from her hospital bed this weekend. Which will be pretty rockstar.
Uma isn't responding to the doctor's morning neurological exam yet. But the operative word in that sentence is "yet." The exam basically consists of the doctor asking her to hold up a certain amount of fingers and Uma complying; the thing is, Uma has definitely held up different amounts of fingers for us throughout the day today (the way I just phrased that makes it sound like she's been holding up other people's fingers, but it's almost five in the morning so forgive any awkwardly worded sentences), she just hasn't done it for the doctors, and I have a feeling that maybe she's being stubborn and she doesn't want to "perform" for the annoying docs who keep poking and prodding her head—after all, this is the same woman who once tried to sneak into a movie at the AMC Burbank (I was with her, so I'm guilty too) and when we got caught she tried to get away with our crime by pretending not to speak English or comprehend English--so I could fathom her not showing the doctors how many fingers she can hold up merely because she thinks it's a ridiculous thing for them to ask of her. But passing these simple neurological exams is important—it's huge—so we've asked Uma to comply with the docs and hopefully she'll get those fingers going for them tomorrow.
Some other details about Uma's progress: she's been smiling a lot, which is awesome to see, and today it looked like her smile was getting a little bit bigger and fuller. (Hello, Angelina Jolie.) For the last few days, her smile has mostly been on the left side of her face, kinda crooked—but today we saw some of the right side of her mouth smiling with the left. She's also scratching her face and pushing her right leg off of the bed—both signs that she's feeling more sensation throughout her body. At one point today, we saw Uma lift her right hand with her left hand and look at her less-mobile right hand. She started poking and prodding at it with her left hand. As if she was really realizing that there was less sensation in that right hand and she wanted to poke it back to life. We told her not to worry, maybe she can't feel that hand right now, but the rehab doctors are going to help her with that. She seems to be more and more aware of what she's going through, and sometimes she looks sad. But those sad moments are tempered by the joyful moments she's been having with all of us. Those moments when she smiles, or even laughs at something one of us has said.
Uma has started her occupational therapy—which means that they are putting splints on her arms and legs to keep them strong (since they aren't getting so much movement these days) and a therapist came in today to help Uma perform some basic arm and leg exercises, to get the blood on the ride side of her body flowing a little bit better. It's good to see that they are starting her on rehab while she's in the ICU, hopefully she'll have a headstart when she gets into her real rehab facility.
The doctors are also working on weening her off of her ventilator, weening her off of her tracheostomy, weening her off ALL of the tubes she's on. The trickiest tube to ween her off of is the ventriculostomy (the draining tube in her brain); she definitely can't travel to a rehab facility until that tube is gone, daddy, gone. (Which makes sense because who really wants to travel with a tube sticking out of their head?) The doctors have said that Uma could potentially travel to her rehab facility while she's still on the ventilator and some of the other tubes (the key thing to get rid of is the ventriculostomy), but the safest way for her to travel would be independent of any freaking tubes, so that's what I'm visualizing right now: the doctors successfully weening Uma off of every last stupid tube that's sticking into her body.
Okay, that's today's update (or, yesterday's update, I suppose). It's amazing to see the changes and improvement Uma makes every day and I'm sure she's tired of all of us telling her how amazing she is, but whatcha gonna do?
3. A REQUEST (something fun):
It's been awhile since I've given all of you an Uma task to do, and I'm sorry for being a slacker. But I've got a task for you now, something to do this weekend.
I was thinking…now that Uma is so awake and so alert, it would be nice for her to really get a sense of how many people are out there rooting for her, praying for her, sending her good thoughts, visualizing her health. I know that there are literally thousands of people out there, all over the world, doing little Uma dances and hoping—HOPING—that she will get well soon. We've been showing photos to Ums in her hospital bed, but we only have a certain amount of photos here in New York to show her and I'm sure she's tired of looking at the same damned photos, so here's my very simple request:
I want you to make a Photo Card. In other words: take a photo of yourself that contains a message to Uma.
(a) In the photo, you should be holding a piece of paper. The piece of paper should have a short note to Uma written on it. This is where the "card" part of this weekend's activity comes into play. The key thing is that your message to Uma be short. A simple "Uma Get Well Soon!" will be much easier to read in the photograph than a long-winded love letter.
(b) Feel free to make your note pizzazzy; i.e. feel free to color it, to illustrate it, to bejewel it. Whatever. (But if you're like me and you're really bad with coloring and illustrating and bejeweling—don't let that hold you back: you can also feel free to just stick with words.)
(c) Once you have this photo of yourself holding a short note to Uma...scan it, or upload it, or do whatever it is that you do to get it onto your computer, and then email the photo to me. If you could get your photo to me sometime this weekend, that would be great—but there's no cut-off date. As I receive photos, I'll print them out and get them to Uma. It'll be nice for her to have a visual representation of all of the love that's out there, all of the love that has been flowing her way since we started on this journey a little over three weeks ago.
(Note: I was talking to my friend Thyra tonight—Thyra's never met Uma, but she's been following Uma's progress and thinking of Uma and hoping for Uma every day—and tonight Thyra said something along the lines of: "When Uma gets through this, she's going to be so weirded out by me because I'm abnormally excited to meet her." But I think that's cool—it's cool that so many people who don't even know Uma are thinking of her and sending her love, so please feel free to participate with your own Photo Card for Uma even if you've never met her. The more photos, the better.)
Feel free to pass this email on to anyone who might not be on my email list who's been thinking of Uma. Feel free to repost this email on your own blog or on MySpace. Let's spread the word, we're going to give Uma something to hold and to look at, we're going to collectively show her how much love is out there.
Thank you so much,
xoxo
Erik
Subscribe to:
Post Comments (Atom)
1 comment:
Okay. I have to read the rest of this... but...you have Marie. Take advantage...
By the time she leaves you can have a color coded, chart in ascending order of whateveryouvanthinkof for rehab instead of "some leads and info."
Just sayin'. :)
-gab
Post a Comment