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March 7, 2007

Uma Update

From EriK:

hello friends...there was lots of good activity and progress for Uma today, so much so that john actually sent out three updates, one in the morning, one in the afternoon, and one in the evening. i'm not going to say much here because there's plenty below for you to read from john, but i will say that tomorrow, Thursday the 8th, is John's birthday! So wish him a happy one if you get the chance. ( john.ballinger@sbcglobal.net )

Also, a quick update on the fundraising front...I finally did the math this afternoon, after having not done it for several days, and we've managed to raise almost $37,000 in the last eight days!!! HOW CRAZY AND AMAZING IS THAT? There have been donations made by over 450 people, many of whom don't even know Uma. All of the love is inspiring. It really reaffirms for me that we can do anything we put our minds to. It's true. We can. And nothing should stop us from dreaming big and pursuing those big dreams because life is fucking fragile. If we recognize how fragile it is, we can either live in fear and or we can become stronger in the face of that fragility. I choose "stronger." Like, the other day, the part of me that's a hypochondriac started worrying that a canker sore I had might actually gum cancer, and I worried about it for a few minutes and then I stopped myself and I was like, "DUDE, seriously, no time for that--get the fuck over it." And then the other night, at the theater fundraiser for Uma, right before I went out onstage to thank the audience for coming, I had a moment of I-hate-talking-to-crowds nervousness, but then I told myself, "um, just go out there and talk to them, how hard is that?" And then I was fine. Both of those examples are little things. I guess what I'm trying to say is that Uma is going to need a lot of strength to get through this next chapter of her life--the rehab chapter--and she needs strength from her friends and family too, and I know we're all going to be ready to give that to her, and thank you for that.

Okay, that's all from me tonight. Love you all, and now here are the updates from John!

UPDATE #1:

hi everyone,

uma had a shunt put in yesterday and, after a few
hours in the recovery room came back to the icu and
seemd tired but alert and fine. the dr. said it was a
'fairly uneventful surgery.....that her ventricular
pressure was twice was it should be (21cm vs. about 9
or 10cm) and that this confirms that she needed this
intervention.....that you should be able to travel by
the weekend.'

i checked with the chief resident and he confirmed
that the shunt was placed where he wanted it.

i was able to go with her down to the operating room.
it was nice to be there right up until the moment they
took her back. the whole OR team was very good with
her. somehow, when you get behind those restriced
areas, all the personel of suddenly extremely
professional and compassionate. i have faith that she
was very well cared for.

right now i'm sitting at the starbuck's across the
street from st. vincent's. there is no internet where
i'm staying in brooklyn so this is the next best
thing.

i'm getting tired. marie has organized a schedule of
visitors that began yesterday and this is a really big
help. i find that my level of exhaustion is so high
that i can literally sleep sitting up in the waiting
room or find a short couch somewhere. i got a nap
yesterday for the first time in about a week and it
was great. i felt much more able to be there for uma
and deal with all the legal and medical things as
well.

i hope uma isn't in too much pain and that she feels
better. i spoke again with dharshi last night and she
informed me that it takes aboue a week or so to get
the ventricular pressure down to normal levels so not
to expect that she will suddenly be complete.

please, if you can, if you still have the energy, pray
for her - that this shunt will be a forgotten thing
soon, that it will function without infection, that
she will feel better, that she can go home soon.

i'm going up there now to see her.

all my love

john

UPDATE #2:

hi,

uma was taken out of the intensive care unit today and
put in a regular hospital bed and room. she is now off
of all monitors and only has her abdominal feeding
tube, catheter, and tracheostomy.....no more wires
attached. she still gets moisture from a tube in her
trach. to help break up the residual pneumonia, but,
other than that, she's a regular hospital patient now.
i have come back to starbucks because both the
occupational therapist and the physical therapist are
working with her.

i know it may seem like, to some of you, that there
are still alot of things attached to her....but there
are no machines, no monitors, no incessant beeping of
alarms from other patients monitors, no constant
movement around her bed as the nurses attend to the
other icu people. its very quiet in her new room.
there is one other person in there and she is leaving
today. and....i don't know if ever told you all
this..in the intensive care unit, they don't allow any
chairs. they need for people to be able to exit the
bedside very quickly in there so chairs are banned.
but in the regular room, i get a chair. after about 15
minutes of being in there with her and in that chair,
we were holding hands and both fell asleep. i don't
know if i can express the relief, the feeling of some
normalcy, some distance from the danger, the mark of
progress. exquisite.

so that's the update. i'm going to try hard to get in
touch with dr. h and see when we can go back home.
whatever he says, we'll do but i need to know to make
all the arrangements.....AGAIN.

more soon.

UPDATE #3:

hello all,

i'm so tired - i hope i spell ok.

today we moved her out of the icu and into a regular
room. in physical therapy she sat on the edge of her
bed by herself, extended her right leg (that's right,
her RIGHT leg) 5 times on command while seated. she
then sat in the recliner for about 3 hours before
tiring.

the doctors said they could feel better about the
placement of the shunt in her brain. it is 'past
midline, just into the left ventricle' or whatever
that means. i think it can be moves fairly easily
later (if any surgery is easy) but it is draining and
functioning.

i need to bring to everyone's attention a bit of a
problematic situation. i need to ask everyone,
especially those closest to uma, not to, under any
circumstance whatsoever, tell anyone where she is
going in los angeles. this is a favor to me and to uma
from a legal standpoint. i know it's odd to say in
this forum but, believe me, it very much needs to be
said and, please, complied with.

that being, regrettably said, we move on! and she
moves on! even her RIGHT SIDE! keep your prayers and
thoughts with her please. this is a great transition
we are in right now....kind of like the transition you
might make after having rowed a canoe across the
indian ocean and are now heading for the himilayas to
climb mt. everest. she's a long way from home and a
long, long way from the uma we are used to seeing and
relating to. oh, she's THERE, don't get me wrong, but
she will travel far before there is good function in
key areas.

more tomorrow, which is my birthday. i can't think of
a better present than knowing that uma is progressing.
but, tonight, i feel every hour of my, now, 44 years.

much love and thanks

john

Posted by bonnie at March 7, 2007 11:19 PM

Comments

Posted by: Helen at March 8, 2007 10:40 AM

Posted by: DebC at March 9, 2007 3:26 AM