UPDATE FROM MY MOM:
I spent several hours at the hospital on Wednesday, mostly just sitting with Uma while she tried to sleep. She was exhausted from not having slept much the previous two nights because of her cough, and it had been a busy day of therapy. And it was very difficult for her to rest because she was still coughing. We must pray for that cough to be healed so she can get the rest she needs and build strength for her therapy.
I just want to share a couple of impressions. First, a very special moment: she answered a question by looking at me and saying "Okay" in a very clear voice. I was so startled that I forgot John's rule about not making a big deal about such things, and I did act surprised and delighted to hear her voice. It was such a beautiful sound. Uma is, indeed, coming back, but yesterday I saw how very difficult this process is. Spending a few hours watching therapists and nurses come and go every 15 minutes or so made it clear that John and Uma are in a world where there is no peace and no quiet. At one point, when it seemed things were slowing down, John laid down with Uma to help her fall asleep. For about five minutes, it was amazingly quiet, though hospital sounds in the background never stop. But those few moments of quiet were very precious. Maybe this is why Uma cried when she heard the sound of rain on a meditation CD that I played for her while John was taking a break at Starbuck's. I tried to reassure her that she would hear the sound of rain again. She listened for about 10 minutes, then took off the headphones. She'd had enough. I love how clear she is about what she does and doesn't want.
Imagine living in this hospital universe 24 hours a day and trying to maintain any sense of privacy and dignity. Imagine a very private, dignified woman like Uma trying to accept that she has no choice in this, that she must submit to all of this care in order to get well--yet she must also find a way to maintain her sense of autonomy and dignity and self-will. Sometimes this very basic human need works against her in her therapy, yet she must assert herself--even if it comes out in a lack of cooperation--because that is what keeps her sense of self intact. She is so fortunate that John understands this so well and is such a strong advocate for her in every way. But John needs a lot of support, because he is not getting much rest either, and he must keep his strength up to be able to do what he is doing for Uma.
Leaving the hospital yesterday, I appreciated my ability to walk to my car, to watch the sun go down, to go home and eat the home-cooked dinner that was waiting for me, to do simple things for myself that I take for granted. It's not fair that I can do these things and Uma can't. But that's just the way it is, and I guess it doesn't help anyone to feel guilty about it. What we can all do is treasure our everyday lives more, wake up every day with gratitude for what we have--and keep praying for Uma to get it all back.
UPDATE FROM JOHN:
I've been spending the night at the rehab where there
is no internet so I didn't write yesterday. My day
goes like this - get to the hospital about 10 am,
observe all the therapies, make comments and
ask/answer questions, consult with the doctors, eat
somthing and then at about 4 all the activity stops.
Usually there is someone visiting so I see them and
answer their questions and talk for awhile. At about 7
Uma and I are alone and she is usually asleep. I lay
down next to her and nap or pray or look at her.
Sometimes she wakes up and we watch a dvd until she
falls back asleep. I talk to her sometimes, tell her I
love her, remind her that this is all temporary. Then
begins her 'sleeping' time. Colleen Kane brought a
nice cot by that folds up and fits in the closet so I
usualy sleep on that with my head at her feet so I can
look at her face and more easily hold her hand at
night. I'm just a little too big to sleep in the
hospital bed all night. I stay there until about 5 am
and then go home to sleep some more. Wake up about 9,
gather myself and go back.
For the last two nights she has had a very thick cough
that crops up about every twenty minutes. I ususally
use the suction machine about 10 times a night to keep
her as clear as possible. This has continued into the
day too and today they did a chest x-ray and began
more fluids and are restarting the cool mist and
respiratory therapy to try and break up the
congestion. It's really awful seeing her cough like
that all the time. Here we are, 60 days out from the
aneurysm STILL dealing with pulmonary problems. It
severely impacts her therapy because she just can't do
much on such low energy and little sleep. I ride the
doctors and they respond. They are moving just about
as fast as they can I think. I brought it to their
attention yesterday and today the new action begins.
Yesterday in ST the therapist was having a slow hard
time, as usual (not Uma's fault - I'm working on it).
She was being asked to match little cards which had
either pictures of household items or pictures of
animals on them. No response. She was asked to trace
her name on a piece of paper. Some response. She then,
with a laugh, picked up the pen and began writing a
word and what looked like drawing a picture of a face.
At the time neither I nor the ST could figure out what
she did. It hit me later that the word was "good" and
picture was a caricature of the therapist (a very
distinctive face). And all this with her left
hand......tiny little circles for eyes and a face and
mouth. Almost forgot to say, this is the only
therapist that talks to Uma like she is five years old
and always says, "Gooooooood Umaaaaaaaa!" in a real
sing-song voice. I stepped in and explained to her why
she is in the situation she's in - the damage etc. -
and that we need to rebuild her brain just like we
would rebuild a broken arm. I told her I would "count
the numbers out loud with her so you won't be alone
and won't be the only one here doing this silly
exercise". I followed, while pointing to the
corresponding number on the page, with "one..." and
she SAYS "two" .....we then proceed to start over and
she says very clearly, "one, two, three........eight"
with me, in order, no hesitation at all. Then we try
the animal/household item cards again and she finishes
the exercise very quickly and with not a little
At one point yesterday, while helping her in the
bathroom, she looked up at me and, even without her
speaking valve on, clearly said, "go away".....so I
hid behind a curtain and watched her shadow to make
sure she didn't fall off the toilet. And last night in
bed she began to make some sentences but stopped after
a few words - seeming to not know what the next word
was that she wanted.
Today, again while helping her in the bathroom, she
began to cry and said a couple of sentences that
contained some words in order but mostly non-sequitor
words. The context was unmistakeable - why am I not
able to do what I used to....or very similar to that.
In moments like that there is no end and no limit to
the love and comforst I have for her. Just as
unmistakeable to her in those moments is the knowlege
that she is not alone and never will be in these
trials and, for whatever it's worth, that I can feel
how hard it is for her, that it is temporary.
She is following commands better every day, making
transfers from bed to the wheelchair almost by herself
and, in fact, refusing help a lot of the time even
though she still needs it. She ate soup, potatos, and
milk today - no problem at all, and this while having
her tracheostomy completely blocked off. And at speech
therapy today she asked, in about a half-complete
sentence, "do you know why...." which was very clear
and then, "(something) don't..." and then "talk?".
The ST fumbled with a lengthy answer and soon lost Uma
again. I stepped in and told her very clearly what had
happened to her and what was happening to her and what
will happen to her. This helped a lot and we
continued. (gotta do something about that ST. Her
accent is so thick sometimes I can't even understand
her. If that isn't the definition of irony.....)
And today she got a bag of blood because she is
slightly anemic and they are going to be upping her
fluids to help with the urine and the cough and
sometime doing that can cause greater anemia. It's
interesting signing a consent form for blood. The
doctors have to tell you that there is about a one in
a million chance that she could get HIV or hepatitis
or that she could have an alergic reaction. And, along
with the blood, she gets tylenol and benadryl to ward
off the allergic reaction. So, now, she gets keppra
(antii-seizure), pepsid (anti-ulcer), heparin (blood
thinner), Detrol LA (and bladder spasm), tylenol
occasionally. Since they removed her PIC line on
Monday she had to have a separate IV installed in her
right hand. I put the mit on so she wouldn't see it
and pull it out with her left hand. And they are
watching and waiting for her heart rate to come
down.....we'll see what happens with that.
on and on and on and on and on.........the days and
nights just spill over each other like waves on a
beach - me, the bouy, chained to the bottom with
sometimes not enough length of chain.
It has come to my attention that the staff are
focusing on strengthening her left side to compensate
for the right side - rather than on restoring the
right side. They told me today that the discharge date
is April 17th from in-patient therapy. This is four
weeks. .........now I know much more what to expect.
I'm pushing so hard for work on the right side - they
resist - I push harder and they respond. But I realize
now that we will be doing this kind of thing for a
long time. Erik and I were brainstorming the other day
about what to do when she is discharged. Probably we
will augment any county arranged out-patient therapy
with something elsewhere or at home. It seem to me
that, the stronger she gets, the more work she can and
will want to do. This one hour a day for each therapy
is probably appropriate for her condition now but she
can do more later and we will provide that for her no
matter what it takes. Her personality and mind and
will and life are still in there and they are coming
OUT! We will honor this with every known and
still-as-yet-unknown opportunity for her to regain
everything she lost. I've never had to do this before
but I can't imagine anyone more qualified to get all
the help they need.
Meantime, for the prayful/thoughtful/visualize-ful,
she REALLY needs to sleep at night and REALLY needs to
be DONE with respiratory problems. Take a deep breath
and pray for her. If she can't sleep or breathe well
she's not truly getting the fullest therapeutic
experience here....and with just 3 weeks left this is
I know that I'll need help when she comes home. There
will be times when I can't take her or maybe can't
pick her up from out-patient therapy.
I plan to keep up this schedule 'till about the first
week of April. By then I really hope the staff and she
and I have the kind of relationship and patterns
established that I can work at home and spend some
time away from the hospital.
Keep her in mind, please. Before this facility, the
intrusive and acute side of medicine had a lot to do
with her recovery - but couldn't have done all that
was necessary without the prayers and thoughts of so
many hundreds of people. Now, we're a little bit more
on our own so-to-speak. It's kind of up to her, some
therpists, and our love to bring her back. Please
continue your love for her.
Feel free to email me anytime. When I'm down during
the day (and this happens each day) I like to get on
my cell phone and check emails.
All my love and respect to you all,