latest Uma update

I saw Uma for about an hour this morning. The new facility really is
wonderful. One of the physical therapists was in there with Uma when I
arrived and this woman was so good. I'm annoyed with myself because I
can't remember her name because she was so good and I want to praise
her. Anyway, she helped Uma get into a wheelchair and then she had to
take Uma's blood pressure to make sure that the levels hadn't risen or
fallen abnormally (either of which would indicate that she maybe she
was dizzy or not in the condition to be sitting up at the
moment--after spending so much of the last 40 days, okay MOST of the
last 40 days, lying down, her body needs to take some of these things
slowly) and the first time she took Uma's blood pressure it was pretty
high, but she'd taken it on Uma's right arm which is involuntarily
tenses up a lot, so it's not the best indication of her actual blood
pressure. Anyway, I think a lot of people might have taken that one
reading and then been like, "oh well, you're not ready for this, back
into bed," but this therapist then tried to take Uma's blood pressure
on her other arm, and then when Uma struggled with that (because she
really dislikes the blood pressure machine, the tightness makes her
uncomfortable and fidgety) the therapist decided to stop using the
machine and to manually check her blood pressure with one of those
handheld pump things (sorry, I don't know the technical term, but
"handheld pump thing" should suffice), and finally, after several
attempts, she got a good blood pressure read and then she let Uma stay
in the chair for an hour. It was just so nice that this therapist went
to all of the effort to make sure that Uma was safe.

There was a moment this morning when I saw a look of embarrassment on
Uma's face--the physical therapist was helping her into the chair and
Uma drooled a little bit on the woman's shoulder and then Uma saw it
and quickly wiped the drool away with her hand before the therapist
even saw the drool, and then Uma quickly looked at me, like, "did you
just see that?" and then she looked at the therapist, like, "did SHE
just see that?" and this quick flash of embarrassment flashed across
her face. I just mention that because I feel like it's another strong
sign of Uma being "there." Because if she wasn't "there," she wouldn't
care whether she drooled on some therapist's shoulder, or whether
anyone saw. But she DID care. (and i feel like Urp is going to be mad at me when she gets out of this and reads my blog again and finds out that I fucking wrote about her drooling on MY BLOG) (but i think this little anecdote should help give people hope) (and we need people to continue hoping, urp!) (so i'm totally cool with you being mad at me, down the road) (because that's not what's important right now--what's important is that we keep sending you as much energy and good vibes as we can possibly muster)

Uma definitely has a long road ahead of her. It's going to be tough
and she is going to need to stay strong. That's what I've been praying
for and visualizing today. For her to fucking stay strong and to keep
that strength. For her to focus all of her anger and frustration (and
boredom, even, because it's gotta be boring to be in that hospital
room day in and day out and not be able to talk), just to focus all of
those feelings on the right side of her body, to focus all of that
excess energy on getting all of her muscles strong again. Thank you
for your continued prayers! Please keep them up! Honestly, I know they
have helped--even the doctors say that patients who have people
praying for them do better than patients who don't, they've seen it
time and time again. Whatever you believe, however you want to phrase
it--I believe that putting good energy out into the universe, good
focused energy...it works, it helps. And Uma could definitely use a
boost right now. So keep her in your thoughts...THANK YOU, and love to
all of you. HUGE love to all of you.

Okay, here's John's much more detailed update:

hello again to everyone,

i am so grateful to all of you for everything you've
done for us, for uma. in the face of all of these
insults to life, we've passed through that phase of
her recovery. one of my least favorite things to do
is use a worn out phrase to express myself...but it's
not MY fault that it's worn out and it happens to be
the absolute truth - we could not have done this
without you. i don't believe she would be where she
is, given the circumstances, without everyone's love
and contributions.

so much has happened these last few days. it's hard to
keep things in order.....

we left st. v's with a lot of activity - the air
crew showed up with a stretcher and all the ward was
moving. so many nurses came out from their patients to
say good luck and goodbye. mary, the case worker,
cried TWICE saying goodbye and gina, the pastoral
counselor, gave both of us a heart-shaped stone. i
think she was the hardest of all to wave goodbye to.
we left before visiting hours began and i'm glad of
that in a way. sitting in the waiting room of an icu,
you really get to know the people who are worried,
scared, angry about what has happened to their loved
one. they all knew that we were getting ready to go
and i had said goodbye to most of them the night
before. just knowing that, for some of them, their
loved may never make it out of st. vincent's was too
heavy for me to face, to see in their faces one more
time.

a lear jet goes about 650 knots at 41,000 feet. we
landed in columbus, ohio and in colorado springs for
fuel. when i found out we were landing in colorado i
called my sister sharon and she met us at that little
airport for a little bit of time. she came out with
her youngest son, jacob and they got to sit in the
plane with uma for a little while. good. everything
about the flight and the transfer went extremely well.
the pilots radioed ahead to colorado and ordered three
pizzas. i said, "wow! each of these pizzas cost
$7,000.00. but you get a free coupon for a lear jet
and stretcher!"

let me back up a bit - 2 weeks ago monday, if you
recall, we were cleared to leave ny. at the last
minute dr. h changed his mind saying, "the dilation of
her ventricles cannot be explained because of possible
shrinking of the brain due to atrophy/stroke. she's
just not draining well and we need a shunt." this
after waiting a week to see if we needed a shunt.

yesterday morning (monday again) he said to me, "the
ct scan from sunday reveals that her ventricles are
the same size as they were BEFORE the shunt surgery.
if she were staying here we would revise the shunt -
do it again. it's also possible that they are enlarged
due to shrinkage from atrophy/stroke.......the
important thing is to get her back to california...."
he also said that he is not particularly happy with
where the shunt ended up in her brain. it is only one
to two centimeters into her LEFT ventricle - but the
shunt STARTS on the right side of her skull. the way
i read this is that they overshot the mark and ended
up not where they wanted to be. to reverse the joke, "
but this IS brain surgery" aren't you supposed to be
able to aim something that you're feeding thru
someone's skull? and, if not, SHOULD you be putting
something thru someone's skull?

to know that 3 weeks were almost completely wasted
there and that they have insalled a questionable shunt
is of enormous pain to me - not to mention what uma
might be suffereing as her "level of csf pressure is
twice what it should be".

so ----- there is a new ct scan being taken tomorrow
morning at the new hospital. in addition to this, they
have all the pertinant ct scans on cd rom from st.
vincent's. my gut and my newfound experience informs
me with an horrific weight that she will feel better
and improve better once the inside of her cranium is
the way it should be. in so many ways the helplessness
seems to continue. i hope and pray the new view of her
condition by the current doctors will add up to better
care for her. i never in my imagination thought that i
would hear completely divergent views about uma's
health from the SAME doctor just one week apart.

that being said - the new facility is, so far, really
kind of amazing. today we had a speech therapist, a
physical therapist, a neurological rehabilitation
doctor and his physicians assistant, a respiratory
therapist, a vascular doctor, TWO social workers, and
a case worker tend to either uma or me or both of us.
these people ALL seemed to know what the other team
members (that's what they call themselves) were doing
and when they would be doing it. EVERYONE seemed
concerned and motivated to get her up and running. i
already mentioned the ct scan tomorrow but there is
also a 'new patient' team meeting wherein all the
above mentioned people plus a psychologist will meet
and discuss uma's case. i had a 45 minute interview
with a social worker today who asked me what her life
is/was like, who she is, what she likes to do, how she
behaves - she wanted to put a human to the facts and
figures. i kind of feel like, if uma doesn't get
better here.......well, you finish the sentence.

despite my my thanks and all the
progress she has made, i feel i owe it to you to tell
you what is going on with her right now. first of all,
the road ahead is going to be very, very hard.
sometimes i get confused watching her or interacting
with her - today when the doctor asked her to stick
out her tongue and did it himself to show her how, she
smiled a fake smile at him. this happened twice. when
he asked her to hold up one finger, she used a finger
on her left hand to press a button on the bed railing.
yet, in new york, when the speech and swallow
therapist put apple sauce on each of the four corners
of her mouth she grabbed each dollop with her tongue
as the therapist mimed it for her. and, today, twice,
as she was seated in her wheelchair, she was drooling
from the right corner of her mouth and i said, "hey,
uma, you wanna wipe your chin" WITHOUT miming it or
indicating it in any way - she immediately wipes her
chin. i don't know what to make of this except to use
the broken radio analogy again - when the wires have
been damamged they may work sometimes and not at
others - until you repair it.

and, later, watching her in such an obviously agitated
state - bouncing or jerking her left leg contiuosly or
itching all over her face for 20 minutes in a row- or
watching her struggle in coughing fits for minutes at
a time, apoplectic with struggle and lack of air and
watching the nurses suction her - it's just too much
sometimes. all i do is hold her hand and/or her
stomach, gently rub her head and tell her, "i know
this is hard but you're doing well......it's almost
over, breathe slow" etc. i hope that DOES help her in
some way but, sometime, i'm just not sure.

right now her right arm is spasmodic all the time and
curls up involuntarily and with great tension, fingers
askew and taut. she constantly leans her head to the
right and just appears to be so weak. and i don't know
if this is because she's been in bed for 6 weeks or
becuase she's suffering from hydorcephalus or both.

i was told today that most acute in-patient rehab
lasts 2 to 4 weeks. but i need them to understand
that, just becuase she is THERE at a rehab facility
does not mean that she is READY for rehab. i must get
them to seriously and immediately address this
ventricle problem. i'd hate to have them spend four
weeks on her and see some improvement and then kick to
out-patient if she's suffereing from a condition that
could be seriously improved with the correct medical
procedure. i reaally hope that after tomorrow's ct
scan they tell me something useful. i grow less fond
each day of vague, 'wait and see' phrases.

so - that's where i am tonight. mixed. i have great
gratitude for being here and great concern for her
future. i feel confident that they will do a good job
with her rehab here and i want to have that confidence
in the neurological diagnosis as well.

if you can, please continue to pray for her. i know it
works.

all my love and thanks,

john



(the photos are all from march 12th, this last one is of uma sleeping really soundly after a long day)