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Date: Sun, 03 Feb 2002 16:48:37 -0500
I had a note from Beth,Chris' step mother, early this morning that
I just picked up. David and Heather are Chris' cousin and his wife
that they were hoping would get there in time to have a good visit
with Chris. Sounds like it happened. And it sounds like Chris' wit
is still with him! David and Heather got here safely last night
and had a terrific visit with Chris. He's slowing down and it's
getting harder and harder to see him. There continue to be funny
moments, though. His dad told him yesterday that he's proud of him
for being so strong and Chris mouthed the words "get over it." We
roared; it's so typical of him.Beth I'll keep you posted as I hear
more.
Jane
Date: Sun, 03 Feb 2002 18:31:18 -0500
I have gotten a few off-list messages expressing concern for Chris.
A few people have asked me if Chris had a Marfan-experienced surgeon.
I don't know, except that I believe the surgeon is the same one
with whom he'd had successful surgery to replace a major portion
of his descending aorta in1999. I don't know that for sure. He has
referred to his doctor as "my doctor," and hadn't ever
mentioned getting a new doctor. Chris did say in an e-mail before
his surgery that he had utmost confidence in his doctor.
One person wrote and said that the picture of Chris seems to show
him smoking a cigarette. This was, no doubt, a question resulting
from our recent discussion about whether or not people diagnosed
with Marfan should quit smoking any more so than people without
Marfan. Chris did used to smoke, yes, but in e-mail to the list
in April 2000, he said that he quit in December of 1999, after his
aortic surgery. He wrote,
"My middle name used to be chimney. At the tender age of 32,
I have managed to smoke a pack a day for fifteen years. I thought
I was Holden Caufield, proof that all teenagers are idiots. :)
"I had a big part of my Descending Aorta replaced last September,
and although I had no lung complications, it definitely was not
easy. My lung didn't re-inflate as fast as it was supposed to -Instead
of 12-24 hours, it took like five days, and I think I was still
having trouble when I left the hospital. Couple that with the lowered
hemogloben count, and it was one miserable experience. I didn't
quit right away, I still smoked until December, trying to hold the
number of smokes below ten a day. But it is a pesky addiction, and
I decided I had to go cold turkey. (I used the patch).
"Kudos to your son! [the mail was a reply to someone else whose
son was trying to quit - Chris was lending his support and encouragement]
It is not easy, no matter how you cut it. Beside the patch, there
were two things I found helpful. Reece's PB cups (frozen), and peanuts
in their shell. Last week I bought a yo-yo. Instead of stepping
outside, I yo-yo. You have to find something to replace the habit."
-Chris Paulsen
I, too, have these questions -- why Chris?? Why is this happening
to people who are aware of their Marfan syndrome and are doing what
they can to minimize the risk to their health and their lives? Why
Georgia's uncle, who was also aware and under care? I have two self-centered
reasons for asking these questions: One, I want to know exactly
what I can do to make sure I stay healthy and get the best care
I can, and two, I am going to miss Chris's humor and his willingness
to help fellow Marfan people oh so much! And I don't understand
why it has to be this way.
Jeanette
---
Date: Sun, 03 Feb 2002 22:36:23 -0500
Jeanette and others, I was telling a friend today about about Chris
and
Georgia's uncle and said I wanted to throw my Marfan's away. When
I know
people have taken care of themselves and still have tragic results
it makes
me realize I don't have all the control over my destiny. About 14
years ago
I worked in pediatrics ICU as a social worker trying to help parents
make
sense of why their child was dying. And I came up with there is
no sense to
it. And the way I survived that job (which I loved) was to believe
that
people die when it is their time to die. It doesn't have to make
sense it
just happens. I hate it, it scares me for myself and for those I
care
about,but I can only do so much and then it is out of my hands.
Thinking about Chris,which I have done so much in the past couple
of
weeks,has made me really look at my own mortality,even more than
before. I
am thinking about "what if I were to die today,would everything
be in
order?". I am rethinking my will, before I leave the house
I think about
how I am leaving it-are there dirty dishes in the sink?Is there
enough cat
food for several days? I am getting overzealous in having things
in a state
where anyone could come in and get my "affairs" in order.And
I believe this
too shall pass. Everything is bigger than life and it is sometimes
getting
in the way of life. For me, it is good to make sure my legal affairs
are in
order, but no one is going to care in the long run if my bed is
made or
not. (It's that same thinking that mothers tell us to make sure
we wear
clean underwear in case we are in an accident.) Am I the only one
being so
frantic about life issues? Just wondering... Jane
Date: Mon, 04 Feb 2002 18:41:34 -0500
I received e-mail from Beth this evening. She says she read again
to Chris the list of names of people they've gotten to know from
Marfan-List, so he knows we care and are thinking about him a lot!
Here is an update on his condition: >The new critical care doctor
(the one we've loved for two years retired last Thursday--go figure)
came in this afternoon while I was there, and asked him all the
questions we ask--can you breathe? are you in pain? do you want
anything?--and Chris gave the doctor the same answers he gives us:
yes, no, and nothing. That leads me to think he's telling us the
truth. He started fiddling with the NG tube (which he hates) and
Pete said, don't touch that, and Chris swatted him and gave him
the finger--with that sly, rotten-kid look I adore. He's still in
there. Everybody left to take Grandmama to her motel and Chris and
I watched M*A*S*H together. That's one of our faves. Kind of crosses
the generations, you know. > >Beth
Date: Tue, 5 Feb 2002 13:37:31 -0500
Thanks so much to all of you for loving Christopher. You have given
us a
tremendous gift in the last few days by letting us know how well
he has
also loved you. It is a comfort to me to write about him to you.
Yesterday Chris had a most amazing rally of strength and energy
and we had
a lot of fun with him, but this morning he is sleepy again. We are
meeting
with the critical care team this afternoon to hear their latest
thinking. The original prognosis we got on Thursday was 48 to 72
hours,
and he's obviously a heck of a lot stronger than the surgeon thought
then.
Here are a few of the things you asked; I'm happy to talk about
him. Chris
is 33. He grew up in Michigan, Texas, and New Jersey, got an BFA
in
computer-assisted graphics and photography from Ramapo State College
(after
a hilarious sightseeing trip through a few other institutions of
higher
education), and moved to Portland, Oregon, where the hiking and
beer-drinking were the best to be had. He has always loved computers,
so
he got a job at Kinkos and worked his way up the management ladder--taking
out time to have an aortic dissection in 1997--and then moved to
Maui with
Kinkos. Paradise is actually a horrible place to live, rather than
vacation, so when Pete and I moved from NJ to Atlanta in 1998 Chris
moved
here with us. He works for Xerox, running the Document Center for
the Bank
of America. Last year he did an intensive high-tech second bachelors
degree at DeVry Institute to get IT certification (he graduated
summa cum
laude a month before his surgery).
He asked Santa for pots and pans and dishes for Christmas so he
could (as
he put it so poetically) get the hell out of Dodge and set up housekeeping
again once this surgery was over.
This is his second aortic repair and replacement surgery. The first
was
two years ago. Robert Guyton was the surgeon on both and he's supposed
to
be one of the best. We've been pretty impressed, and Chris says
Guyton
knows almost as much about Marfan as he does. The reason this surgery
got
so big is that they had to combine this one with the one
that was supposed to be in two more years, the abdominal one. He
had an
angiogram right before his surgery that showed too much deterioration,
so
they had to call in Dr. Smith, the abdominal vascular surgeon. I
guess
he's famous, too, but we don't know much about him.
The operation took a long time (13 hours) because they had to get
rid of
all the scar tissue from the 1997 dissection. It went really well,
though,
and they were pleased, even though they had pumped Chris so full
of fluid
while he was on the heart bypass machine that they couldn't close
up his
belly. A week later, after being covered with the surgical equivalent
of
Saran Wrap and looking a lot like a pregnant woman, he went back
to the OR
and they closed him up.
In the next few days, though, he developed what the doctors eventually
named pancreatitis. He had horrible fevers and nothing ever came
back from
the culturing to identify its source. The surgery was so complicated
they
just bumped around inside Chris and the trauma to his pancreas caused
an
abcess. He really was hanging in there, and everybody thought about
Jan 20
that he had finally turned the corner and was going to survive
(pancreatitis isn't something that responds to medical intervention)
when
his kidneys started to fail.
His kidneys weren't really what was wrong, though. He was having
another
dissection, this time of the ascending aorta, and a flap of it has
blocked
blood to his heart muscle. They can't fix it because there's too
much
damage to his heart, there aren't enough strong vessels around his
heart to
hook a donor heart to, and they can't hook his heart to a machine
because
they say any surgical intervention would be homicide.
He is (more or less) comfortable, not in a lot of pain, and they
tell us he
will go to sleep and into a coma before the potassium will puild
up enough
to stop his heart.
Chris's web site http://www.westga.edu/~wmaples/paulsen.html
has something
he wrote about four years ago. That's a much more cynical Chris
than he is
now. I told him yesterday that that stuff about food for worms was
a lie
and he nodded at me. He knows it's not true. We rest on the promises
of
God and are thankful for the comfort of friends like you.
Beth
Date: Mon, 11 Feb 2002 21:42:33 -0500
Dear friends, We are all more tired tonight than Chris is, I think.
He is watching the Olympics with his brother Steve and we are headed
for bed. This up-and-down is exhausting. Chris had a tough night
but a pretty good day. His feet are beginning to swell again, which
in the past has meant his kidneys aren't doing too well. He ate
some yogurt this morning but, even though it had Georgia peaches
in it, it wasn't the most successful culinary moment of the week.
I had brought some sliced oranges to the hospital for his brother
and Chris nearly grabbed them out of my hand. That was really fun.
He loved them. And don't think orange pulp doesn't look wierd making
its way through an NG tube! ;-) Take care. Thanks for loving Chris.
Beth
Date: Thu, 14 Feb 2002 09:16:41 -0500
Dear friends, There is no logical reason that Chris is still alive
and we continue to marvel and give thanks. Because he has become
more alert, staying awake for longer periods of time, and because
his vital signs have sort of stabilized, Chris asked to have his
feeding tube reinserted and the doctors agreed. It was removed a
couple of weeks ago, before his dissection, because his pancreatitis
made it so difficult for him to digest even whatever that white
stuff is that he was bloated and miserable. It now seems (although
no one will say so with certainty) that he may have outlasted the
pancreatitis, since he hasn't spiked a high fever in about ten days,
so the nutrition might help him get stronger. It is horribly confusing
to us, because we are not sure what his "getting stronger" will
mean since it can't reverse the heart damage. After the procedure
to reinsert the feeding tube yesterday he was again confused and
sleepy and last night asked me to make sure I got "good stuff for
the train trip." I was glad for a (small) laugh because someone
on the unit died during our visit and a lone woman wailed with all
the tears of the world and there was only one of the wonderful nurses
on our unit to walk her out. Pete and Steve and Grace and Sarah
and I managed not to cry ourselves and Chris was (unfortunately)
with it enough to correctly interpret what was going on, but the
absolute funniest nurse on the whole unit, Joel, was suctioning
Chris's vent at the time and he kept up his usual patter and we
all took deep breaths--as much for ourselves as for Christopher--and
prayed that the poor woman wouldn't be alone for long. We thank
you as well as our friends close by that we are not alone. I begin
to wonder sometimes how anyone else can stand this waiting, and
if you want me not to tell you about it everyday, please let me
know and I'll stop. Beth
Date: Fri, 15 Feb 2002 22:37:33 -0500
Dear friends, We have been overwhelmed by your generosity and continuing
love and support for us all. Thank you feels like a pallid response
compared to our feelings. Your reassurances and comfort feed my
soul, particularly when you tell me about yourselves. I am saving
your messages so I can respond properly when I have more time. For
now, please accept corporate gratitude. Now I have a different request.
I always print out and take to the hospital the e-mails that are
to Chris himself and I generally edit the ones you address to me.
If you drop him a short note to our address--particularly if you
have something smart-mouthed or funny to say--he will love it. He
can't read much, just a paragraph, and I space them out during the
day, but as we say in the mountains, by all means keep them cards
and letters comin' in! Tonight Pete told a friend that Christopher
is too weak to get well and too strong to die. It is so true I can
hardly bear to write the words. Today we ran around after doctors--unsuccessfully--to
get another reality check. The critical care team is stretched beyond
its normal limits due to the retirement of its chief (the interim
is really the chief of surgery), so each one we see introduces him-
or herself to us for the first time, and Chris's surgeons are avoiding
us. Even his primary nurse confirmed that suspicion today because
she told us they are so painfully uncomfortable with moments like
this. We have an appointment to talk with the thoracic surgeon Monday
morning. We'll see what he says. Chris is still pretty much holding
his own, but even turning over--or being turned over--in bed exhausts
him. The pressure monitor in his left ventrical is still showing
much damage and they plan another echogram for Monday. They are
waiting to reinsert the feeding tube until after that. They put
the NG tube back in so he can drink (today he asked for Red Rock
ginger ale, which has the strongest bite on earth) and eat little
bits of Italian ice (a big favorite) and pudding (not so successful)
and ice cream (sometimes). When he drank the Red Rock, Kathy (the
nurse of the century) worried because his eyes watered. We told
her that was the whole point. When I gave her some, her eyes watered
too and we all laughed. She's great. Tonight he had tomato soup,
which he loves, but it didn't stay down. He assured me, though,
that it tasted great both directions! I roared. I guess when you
don't have any acid in your stomach vomit isn't as bad as normal
or something. Thank you again for all your wonderful care and support.
When I got breast cancer this summer, Chris told me I should join
an on-line support group and I said, gee, I have so many friends
here who've gone through it I don't need to. But he said, maybe
not for you, Beth, but for other people who don't have the same
network you have. He was only partly right. You all have taught
me volumes and I thank you. Goodnight. Beth
Date: Mon, 18 Feb 2002 16:34:55 -0500
Dear friends,
Pete and I met with Dr. Guyton, Chris's heart surgeon, and Dr. Ahmed,
a
critical care attending, this morning and here is the gist of what
we
learned. You'll have to bear with me if I describe something wrong
since
most of you know far more human (and especially cardiac) anatomy
than I do.
I'm working with the remnants of high school biology here, since
I did one
of those ridiculous honors programs popular in the 60s that allowed
me to
design my own undergraduate program so I got a degree without a
single
credit hour in either math or science. I'd sue the university but
I'm too
busy.
Chris's heart is pumping about 15% as well as it should because
the
dissection has blocked blood to his body and to the right ventricle
(I know,
I said left before; I was wrong). Both the ascending aorta and aortic
valve
are severely damaged. He is nevertheless stable beyond what anyone
has
anticipated and is, as I've told you, completely alert and fighting
like
crazy. Today they did another echocardiogram and learned that not
much has
changed from the last one.
They anticipate scar tissue might begin to make the right side of
his heart
get harder or stiffer or something like that. (It hasn't so far.)
The
heart won't start squeezing blood again, but it might not be so
stressed
every time his heart beats (now with the assistance of the milranon,
a heart
drug). If in two weeks he continues to be stable and get a little
stronger,
and if they think he has a 25% chance of surviving the surgery,
then Dr.
Guyton will replace his aortic valve with a pig valve. It's better
than a
mechanical valve because he couldn't tolerate coumadin (blood thinner)
and
it won't require anti-rejection drugs (I personally wondered if
Chris would
thereafter swear off bacon, but I didn't ask). If he survives the
surgery,
he will need six weeks to recover in the hospital and six to twelve
weeks in
a rehab hospital and he will have a much, much more limited physical
life
than he's had. Guyton was pretty cool about saying he's glad Chris's
work
is intellectual rather than physical. Then he told us about his
own father
who lost the use of both legs and one arm to polio at age 24 and
still went
on to write the still-standard textbook on physiology (and we already
know
Dr. Guyton's father raised 8 sons who also became doctors).
An important factor in all this is Chris's ability to get some nutrition
to
get stronger. Since the last time he pulled out the feeding tube,
they've
had him on IV nutrition and now they're putting the feeding tube
back again.
They're still puzzled why he's having such a hard time digesting
even that,
much less keeping semi-solid food down. There are three possibilities,
each
of which has a tentatively hopeful outcome. One, this is the remnants
of
the pancreatitis he is apparently surviving. Two, there is a kink
in his
intestines which are, you will recall, still pushing his belly out
so he
looks like some pregnant woman. Three, maybe during the surgery
they nicked
the vegus nerve that controls intestines and stuff, but nerves can
regenerate. There's no way to test for which of these diagnoses
is right,
because all the tests are too stressful for somebody whose CVP (central
venous pressure) jumps off the scale when someone just turns him
over in bed
or he coughs up some monster booger (or gets suctioned) or he drinks
killer
ginger ale.
That's the best-case scenario. The worst-case scenario continues
to include
multiple nightmares, all of which end in heart failure.
We are trying to bear in mind that crack Alan Greenspan made a few
years ago
when the stock market was soaring about the dangers of irrational
exuberance, but it is hard not to draw hope from this. Chris was,
as you
can imagine, a bit stunned about the long-term consequences, but
gave us two
thumbs up.
Beth
Date: Wed, 20 Feb 2002 17:13:01 -0500
Dear friends,
Chris has had a couple of slow days in a row. He is very weak and
sleeping
a good bit. The feeding tube is back in and Kathy gave him a small
amount
of that canned-milk-looking stuff today. We are keeping our fingers
crossed
that it gets his GI tract going again.
I wish there were more to say. Chris's brother Steve comes back
from NYC
tomorrow and that will be great and his mom returns on Saturday.
He
continues to delight in your messages to him. He's not even interested
in
the news from Lake Woebegone (or Decatur, as we prefer to call it)
until he
reads his e-mails.
Have a good evening,
Beth
Date: Fri, 22 Feb 2002 06:21:58 -0500
Chris was a little more alert yesterday afternoon than the last
couple of
days, although his central venous pressure is still alarmingly high
and his
kidneys are slowing down because his heart is so weak. They are
trying a
new blood pressure medicine and--perhaps, if that works--some kind
of drug
that works sort of like dialysis. His brother comes back tonight
and his
mother tomorrow. If any of you read this before you go to work this
morning
(or to bed if you're on the other side of the world!), drop him
a little
note. Just a sentence or something that I can print out and take
with me.
He loves hearing from you.
Well, I knew it had to happen and yesterday was the day. I ran home
in the
middle of the day because Chris wanted Swanson's chicken broth (it's
the
only brand he'll allow in the kitchen--did I tell you he's a cook?)
and,
since I too am sick of hospital food, I ate a little lunch and ran
back to
the hospital. I was on a short time frame, though, because we had
an old
friend from out of town coming to the house at 3:30. I left Chris's
room at
3:05--more than enough time to get home--and proceeded to forget
where I had
left my car in the parking garage! After 76 days of going at least
once and
sometimes as many as three times a day, I just knew I'd do it sometime.
Took me 45 minutes and much crying into the cell phone leaving messages
on
the answering machine (Pete wasn't home yet), but I finally found
it and got
home for long enough to see our friend a little bit before he left.
Now
that it's over, it's pretty funny, but I don't recommend it. From
now to
remind myself where I've parked on I'm taking a little memo recorder
that
the girls gave Pete for Christmas some years ago and he's never
used (he's
supremely organized).
CU
Beth
Date: Fri, 22 Feb 2002 21:45:17 -0500
Dear friends,
Today was a discouraging day. This morning Chris thoroughly enjoyed
all
your e-mails (thank you!), a couple of cards from family and friends,
and a
few mouthfuls of a sinfully good chocolate milkshake (the rest is
in the
freezer waiting for him to want more) before beginning to get very
tired and
occasionally disoriented. He spelled out very carefully on his letter
board
that I should remember to give him directions to the party. Kathy
and I had
a good laugh about that one and kept asking him where the party
should be.
Here? Kathy suggested. No, I said, Maybe we should have it at our
house?
No, Chris shook his head. How about Trackside (his favorite local
bar),
then? I said. Two thumbs up! Later in the morning, when he woke
up and was
himself again, we told him about the conversation and he laughed,
too. Then
some of his friends from school came to visit and he told them he
was having
a very good time since they have good drugs here. And he wasn't
a bit
disoriented when he said it!
About that time he was squeezing this cool stress-relieving gizmo
that his
Aunt Dottie got him last weekend--you know the kind that's like
a kid's
balloon full of sand? They're wonderful to squeeze and play with.
I asked
him if I could play with it and he reminded me that he had given
me one for
Christmas. That was amazing to me, since that was about four Christmases
ago, and I had forgotten all about it until that moment. I wore
the thing
out and now I wish with all my heart I still had it.
The rest of the day went downhill from there. They tried three times
unsuccessfully to put in an arterial line, now that they have him
on
medicine to keep his blood pressure up (irony of ironies for someone
who's
had to take blood pressure medicine for years!) and you know how
ICUs want
to know every piece of information instantly and they want to monitor
all
their efforts every minute of every hour. The first two times they
tried to
put it in his left wrist, since he is right-handed, but his arteries
are so
spongy it didn't work. Then they tried his right wrist and that
one worked,
but the pressure reading was all wrong (even I could tell it had
the same
number--25--as his central venous pressure) so they knew they'd
gotten a
vein instead of an artery, so they took that out. The sedative they
gave
him for the procedure made him sick to his stomach and they finally
let him
sleep for a while. A couple of hours later a wonderful young resident
(he's
from Guatemala--right next door to Honduras, where our daughters
Grace and
Sarah are from!) managed to find an artery and put the line in the
first
time. Thank God. This evening all the lidocaine or novocaine or
whatever
it is had worn off and both his wrists hurt. It breaks my heart.
Then,
just as Pete and I were leaving this evening, he had an episode
of what the
nurse called v-tach and, although I watch "E.R." faithfully,
I can't for the
life of me remember what that means. I only know it's not good.
She was
calling the doctor as we left.
I am deeply thankful that Chris's brother is arriving tonight and
his mother
will get here late tomorrow morning. He has surprised us before,
and I
wouldn't put a damn thing past him, but we treasure every minute
with him
more every day.
Beth
P.S. One of you (sorry I forget--maybe it's Jeanette) wrote him
a message
about yourall's caffiene discussion. I've given it only desultory
notice
myself, but whatever one of you wrote to him about it cracked him
up.
Thanks.
Date: Sun, 24 Feb 2002 08:13:39 -0500
Good Morning!
First and again, many thanks to all of you for holding Chris in
your prayers
and for praying for us. We know that it makes a difference.
Some of you are on other lists maintained by Chris' mother Diana,
his
brother Steve, and my wife Beth. This offering this morning is to
add my
take to an increasingly confusing situation.
Three of Chris' body systems are now seriously compromised. He rarely
breathes on his own. He is almost consistently supported by the
ventilator.
His heart is working very hard but would not continue to do so without
the
medications. His digestive system has not yet begun to work on its
own so
he receives nutrition from both an IV and from a feeding tune in
his small
intestine.
Basically all these aids are provided because he is still aware
of his
surroundings and still interactive with those who come to visit
him. He is
still Chris and when he is awake, it is wonderful and fun to be
with him.
Even in this arena, however, he sleeps more and occasionally when
he is
awake he is in that limbo land between sleep and full awareness.
His
confusion is often, though, a source of great humor when he is fully
awake.
Earlier this week he wanted directions to the party. We worked with
him to
determine that he wanted directions to a local pub. When awake later,
he
agreed that that was where he wanted to go. I don't blame him.
A consultation with his thoracic surgeon early last week gave us
some hope
that another surgery to correct the dissected aorta might be possible
but I
don't think Chris has the strength for that surgery anymore.
On Saturday his abdominal surgeon examined his distended intestines
and
talked about a minor procedure to drain fluid so as to decrease
the
swelling. This will make him more comfortable but will have little
impact
on his recuperation.
The one thing in all this is that Chris has an indomitable will
to live.
Right now that is his most important asset. In the past 11 weeks
that will
has often pulled him through. We are standing with him in his fight
and
will do everything we can to assist him.
Your prayers and love are a key part of all this. Again, I thank
you for
your care and ask for your continued work.
Pete P.
Date: Mon, 25 Feb 2002 07:06:04 -0500 Dear friends,
Chris is failing, but he still has some good moments. As usual,
even his
moments of disorientation are more often funny than frustrating
or sad. But
his times of being breathless or choking or vomiting are more wrenching.
All the clinical indicators are alarming--his central venous pressure
is 45
and his heart beats 140 times a minute and the ventilator is up
to 18. They
are going to aspirate some of the fluid that has collected in his
belly to
see if that will take some pressure off his heart and lungs, but
we know it
will come back.
He had some really good visits yesterday from friends and from his
boss, who
keeps telling him how much she hates his temporary replacements.
I have a
couple of good e-mails to take him this morning, although he's increasingly
so tired he reads them in shifts, a few at a time.
Pete and I have requested another meeting with Dr. Guyton, the heart
surgeon
and the critical care attending doctor of the week (I told you the
chief of
the service retired) because there's no way he's going to meet the
clinical
criteria they set out for us last Monday. We'll let you know what
they say.
It's good to have Steve, Chris's older brother, here with us and
it's a
little spooky but kind of fun to see Chris's truck drive up and
down the
driveway. We've started the engine a few times and renewed the insurance
and license, but it hasn't been driven in 81 days. His mother Diana
is
staying at an inn a block from the hospital and she came over last
night for
a drink and we had a good time.
Thank you again for your faithfulness to Chris and to us in these
hard days.
I learned from Chris a long time ago how surprisingly real is the
virtual
world on the internet, and you have proved it to me.
Beth
Date: Mon, 25 Feb 2002 13:57:46 -0500
You all have been so terrific about sending us funny stories that
I was
rehearsing them to myself in the shower this morning. Then I realized
I had
forgotten to tell you the funniest one from Decatur in recent days.
Here
goes--I warn those of you with gentle spirits that it's a bit graphic.
Most of the time when Chris drinks stuff he drinks too much too
fast, no
matter how much we say, Take small sips. Wait a minute before the
next one.
Stuff like that. He's not dehydrated, he just wants something in
his mouth,
you know? Then, when he drinks too much too fast, either the NG
tube gets
clogged or it doesn't drain fast enough and then he vomits, always
with this
funny, little-kid "you caught me" grin on his face after
he stops gagging
and getting suctioned and everything. On Saturday night, he did
it again,
and our second-most-favorite nurse in the whole world, Toni, who
works
weekends, was using one of those huge syringes to flush out the
NG tube and
get it flowing again. She drew back some of the stuff in the tube
(use your
imagination) and accidentally got a little air in the syringe, so
before she
squirted it back in the tube, she tapped the plunger end of it on
the back
of Chris's bed to get the air out, but she tapped too hard and everything
in
it squirted up on the ceiling and some of it fell down on all of
us! It was
in our hair and on Chris's glasses and on the pillow and we all
started
laughing so hard that Chris told me to shush because there were
sick people
in here! Poor Toni was laughing as hard as the rest of us and she
stood on
a chair and hung onto one of those hanging things from which they
suspend IV
bags and washed off the ceiling light and she was laughing so hard
she
almost fell.
Okay, I told you it was graphic, but I guess you all know hospitals
all too
well so maybe you can enjoy it too.
Beth
Date: Mon, 25 Feb 2002 18:53:20 -0500
Dear friends, Before I tell you about our meeting with the doctors
today, I want to tell you something that happened yesterday afternoon.
I respect and honor your very appropriate ban on discussion of overtly
religious matters, so this is a bit edited. (I have told Jane Harris
the whole story because we share with her the same faith commitments,
and she is welcome to share it with you if you ask her.) Yesterday
morning Chris spelled out the name of a friend of ours who teaches
with me. When Pete and I got to the hospital Diana and Steve told
us he wanted to see our friend Stan. Stan came to the hospital and
we had a long and wonderful talk about healing and wholeness, not
miracles or cures, and we rubbed Chris's feet with lotion like I
do all the time. I learned it at the foot clinic of our homeless
shelter and Stan works at another shelter, so he knows how to do
feet, too. And we talked and talked and it was the most peaceful
and--oddly--joyous conversation I can remember in days. Shortly
after that, last evening, Chris began to be more and more sleepy
and less and less able to wake up or to stay awake when he wakes
up. Today he's slept pretty much the whole day. No one can be sure,
of course, but it's almost as though Stan was able to give Chris
the permission to let go without giving up. That's been such an
important distinction and I adore Chris for it. He's never wanted
to give up, and what you all have told us is that he's given you
that same courage and strength of will. Letting go is different.
It stems from trust rather than from despair. We met with Dr. Guyton
the heart surgeon and Dr. Bailey the critical care doctor-of-the-week
today. It was already obvious to us that Chris was not going to
meet the clinical criteria they had set for him last Monday and
they confirmed our impression. Dr. Guyton, world-famous heart surgeon
that he is, said words I shall never forget: "I was wrong." He told
us that, if Chris were his child, he would begin to cut back on
the milranon that is making his heart beat so hard and the I-forget-its-name
blood pressure medicine that is keeping his blood pressure up but
is now damaging his kidneys, which are already compromised. On the
other hand, since Chris can't participate in this conversation himself,
we must honor his wishes the last time he expressed them, and those
are that he wants to fight as much as he can. I loved Dr. Guyton
for that. Dr. Bailey told us about losing his own brother two years
ago and having to make similar decisions as ours. He too was wonderful.
We decided both to honor Chris's wishes not to give up and to keep
him comfortable and free of pain or anxiety in the face of multiple
system failures. There is nothing we can do to prevent the inevitable,
but we will not cut back on his current medications. Tomorrow they
will insert a drain in his abdomen to drain the fluid that is collecting
there because of his heart failure (aspirating it would do no good
because it would be back in 24 hours). We will not increase any
of the medications, though, so his heart will continue to fail.
His lungs will continue to fill with fluid but we will not turn
the oxygen up past 55% because higher than that would damage his
lungs (it's at 45% now). Potassium will continue to build up in
his blood because his kidneys are failing and that will probably
be what stops his heart. They were keenly aware of how broken their
first crystal ball is--they told us on January 31 that he had 48
to 72 hours--so they refused to speculate about how long it will
take. They did say, though, that in a couple of days, if he is really
unconscious and not going to come back, we can consider reducing
the heart and blood pressure medicine. Even if my conversation with
Chris yesterday is the last one we have, I am profoundly grateful
for the last three weeks we have been given as a gift. One of us
is with him around the clock, in case he wakes up. Thank you for
being with us through this. Beth
Date: Wed, 27 Feb 2002 08:25:03 -0500
Dearest friends,
We will go to this hospital this morning and have a short time of
worship
with our pastor and then the doctors will begin to cut back the
medicines
that are no longer helping but are hurting Chris. We don't don't
how long
it will take, but we will stay with him--just as you have stayed
with us
through this 82-day journey. We will have a memorial service here
in
Atlanta at Central Presbyterian Church on the second Sunday afternoon
after
he dies--we expect that will be March 10. About a month later, we
will have
another in Warwick, NY, a place very special to Chris and many of
his
friends.
As I think of the ways you all know this path all too well yourselves,
I am
profoundly grateful for your empathy and kindness and energy and
love for
us. Chris has given us many, many gifts in 33 years. You are the
most
recent one.
Beth
Date: Wed, 27 Feb 2002 13:54:17 -0500
Dearest friends,
Chris died peacefully today at 12:30 p.m. His mom and dad, his sisters
Grace and Sarah, and I were with him, as were Kathy
the-nurse-of-the-millennium and about half the ICU staff, including
Dr.
Bailey. Chris died knowing he was surrounded by the love of family
and
friends and the gracious, loving mercy of God. You were all with
us in
spirit and we felt you almost tangibly. Thank you.
There will be a memorial service on March 10 at 4:00 or 4:30 here
in
Atlanta. Other arrangements remain to be settled. I think we have
agreed
that memorial gifts should be made to the NMF, but I will let Chris's
brother Steve tell you that for sure, since he is responsible for
that.
Thank you for loving us through this.
Beth Paulsen
Date: Wed, 27 Feb 2002 16:08:46 -0500
My friends and I have a tradition of sorts where we toast the life
of our
friends or loved-ones upon their passing with a shot of something
strong.
Please raise your shot glass in the air (literally or figuratively)
and join
me in a celebration of my brother's life that ended today, February
27,
2002, at 12:30 in the afternoon. He was at rest, peaceful, and surrounded
by family, doctors, nurses, and all of us in thought and spirit.
In lieu of flowers, Chris wanted us to arrange for donations to
be made to
the National Marfan's Foundation. You may make checks payable to
National
Marfan's Foundation and send it to them at 382 Main Street, Port
Washington,
NY 11050. Please indicate the gift is in memory of Chris Paulsen.
Donors
receive an apropriate acknowledgement and recognition in the NMF
Newsletter
"Connective Issues". The NMF's site is www.marfan.org.
I will be constructing a memorial site at
http://proscenium.home.mindspring.com.
QUOTATION: What a piece of work is a man! How noble in reason, how
infinite
in faculty, in form and moving how express and admirable, in action
how like
an angel, in apprehension how like a god-the beauty of the world,
the
paragon of animals!
ATTRIBUTION: William Shakespeare (1564-1616), British dramatist,
poet.
Hamlet, in Hamlet, act 2, sc. 2, l. 304-8 (1604).
"And yet to me," Hamlet adds, "what is this quintessence
of dust?"
The passage was set to music in the 1968 stage show Hair.
The Columbia World of Quotations. 1996.
- Steve
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