Moving Forward

The filter is in, but I was mistaken. It is not a Greenfield filter,
but some other kind. It is not permanent, that is, unless you leave
it in for more than 2 months after which is becomes permanent. It is
unclear to us if they will be removing it, but it is not harmful to
have. It essentially sits in the artery before the lungs and breaks
up any clots that happen to flow that way. Right now they believe the
clot originated in Karyn's right leg, though no one seems overly
concerned since they were small. Once we can get physical therapy
going and are able to begin doing all the range of motion exercises,
this should no longer be a concern.

The third drain that was installed is now able to start receiving
antibiotics directly which will mean that the infection is being
attacked from three areas. We have yet to hear from the ID team about
how she is responding to the treatments, but her neuro status is
improving each day, albeit very slowly. She is still confused at
times and is slow to remember some details, but at other times she
surprises us by how on top of it she is. Still, she has trouble
speaking because she is so sick and worn down. I can't believe how
much she has endured though and she continues to be a real trooper.

There is not a day that I show up to the hospital where I don't turn
into her room, see her and go into shock that that is Karyn there in
the bed. And everyday at some point, I will see a picture of Karyn
when she was healthy and I can feel how much of a hole is left
without her here. Hopefully sooner than later we will be able to
start filling that hole again and be able to enjoy her company here
where she belongs.

Never a dull moment....

Karyn got her 3rd drain put in today to reduce the pressure on the
left ventricle. Once the procedure was over, she slowly began to
improve. By the time I got there at 4pm, I found her wide-eyed and
looking around the room. Until now she's had a terrible kink in her
neck and I was surprised to see her moving her head around again. Of
course, the best part was being able to talk to her for more than a
few minutes. She is still confused and is quite tired from all the
medication and antibiotics but it appears that she is slowly improving.

One unfortunate thing that we learned today is that an afternoon CT
Scan revealed small blood clots (PEs) in her lungs. This is a very
common thing that happens to people in her condition that don't move
around much, but nonetheless, I didn't like hearing it. The treatment
will consist of low doses of blood thinner, but also the installation
of a Greenfield Filter. This will break up any clots before they
reach the lungs. Jim will find out tomorrow if this is the temporary
kind or the permanent kind.

Other than this, her vitals are good and she is fighting a good
fight. I should add that the treatment of antibiotics to her head is
not a common practice at all. It is something that is very cutting
edge and UCSF is one of the few facilities that do this. As it is
now, it is not done by a nurse, it must be a resident and it must be
done in the ICU. We know this is going to get her home sooner and
with each day we see progress, our spirits get lifted.

~Julian

News From Yesterday

First of all, when I showed up yesterday afternoon Karyn woke up and
we were able to spend about a half an hour talking. Though her
responses are few, she is definitely showing me that wonderful person
that she is. Soon afterwards they brought dinner which she completely
gobbled up....this is all good news, the improved cognitive state,
the appetite (which she never lost) and the fact that she is not in
much pain. In fact, yesterday at 4pm she had yet to have any pain
medication and has not complained of headaches in a couple of days.

As some of you may know, Jim and I met with Dr. Parsa at 6 yesterday
to go over the situation and the plan. The bottom line is that we
want to get her infection-free so that she can restart taking the
Temodar chemo while the tumor seems to be slowed. To do this he
intends to install a new drain in the left side of her head which
will alleviate the swelling in the left ventricle. They are not sure
as to the cause of this swelling, be it tumor or infection, but we
are confident here that it will turn out to be infection and we need
you all to think that right along with us. Once the infection is
under control (and the Infectious Diseases doctors take cultures
every day to determine this) then we can stop the IT administering of
antibiotics, close off the drains and begin standard IV delivery of
the treatment.

The most optimistic guesstimates of when she might be released will
be sometime next week though the situation is such that no one can
really predict when she will be cleared to come home. One thing is
for sure though, we do not want her to to come home prematurely---we
want this infection eradicated. Right now she is being overseen by a
whole team of very competent doctors who monitor everything that is
going on and truly are dedicated to helping her through this.

We sure do miss her here though, that's an understatement. Just think
of all the little joys you have. The little things that just slip
into days ---- things we often take for granted. Think of how much
joy Karyn would have to be sitting here helping me type this, the sun
shining in the window and the two kids screaming and asking for
breakfast....I wouldn't miss it for the world.

~Julian

The Treatment Continues...

It's been a slow weekend here at UCSF. Karyn is doing well
considering what she is going through but is still quite tired and
spends most of her time asleep. The Infectious Diseases group has
identified three infection types for which she is being given five
kinds of antibiotics, including some heavy lifters. Because of the
way she is receiving two of these (directly into the infection site)
she will need to remain in the ICU for at least 4 more days, but most-
likely much longer. In 2-3 days we should find out if the infection
is responding to the treatment and whether or not they need to make
any adjustments to what they are doing.

The care in ICU is top notch and she is getting all of her needs met
right now. I happened to show up this morning to the physical
therapist coming in to sit her up and try to help her stiff neck. We
got her to sit and eventually straightened her head out. It's a bunch
of little steps right now, but each one in the right direction is a
good one.

I will update again when we know more, but for now we are settling
down for a bit of a wait.

~Julian

ICU

Karyn is in ICU and getting large doses of 4 kinds of antibiotics. She is stable yet sleepy. More news as I get it. ~Julian