The Story of Leigh

This is the story of the end of Leigh's life told in journal entries and emails that were sent.
I put it here so it will stay safely in Cyberland, where it won't get lost.
It was very difficult to handle these pages of the story again.

I tried to put it in chronological order, but I am quite sure I failed in a few places.
I posted it all on the same night and tried to make it readable the opposite way a blog is usually read, that is the end of the blog will be the most recent part of the story.

One day I will attempt with the help of others to write about her beautiful and brave life.

Last Tuesday night Rob and Leigh sat in their new hot tub celebrating life and talking about their future. I was three hours away, in Folsom, preparing for another celebration. Wednesday was my mom’s 80th birthday.
While I shopped and lunched with Mom in Folsom, Leigh collapsed, stopped breathing, and her heart quit beating in Whitmore. Rob was with her when this happened. They were having lunch at home. I can only imagine what his next few moments were like. Thinking that she may have choked on something he cleared her airway, called 911, called Richard and yelled, “Come now,” and then began CPR. He was trained as an EMT in the Army Reserve, thank God. For the next 15 or 20 minutes, he kept oxygen going to her brain, while they waited for the paramedics. She was taken to Shasta Regional Memorial Hospital in a helicopter.

She is on life support.

When I came back to Barbie’s from shopping with Mom, she said, “ Sit down.”
I hate those words.
I said, “You are going to tell me something bad, aren’t you. Oh, no, I know you are going to tell me something bad. Oh, no. Oh no. Don’t…”
I drove back to Redding, screaming and crying all the way.
I am dying for Leigh. I love her as my own daughter. I can’t stand to see her there with all those tubes… Bless her precious, sweet heart. She is so brave and strong. She is so kind and stoic and calm and, and loving.
The feelings I have for Rob are exponentially more severe. This is my baby boy and he is frightened and hurting and crying and I can’t do anything but cry with him. I feel so helpless and impotent and useless.

September 25
Not much has changed. The doctors say to be patient, but that is a very difficult doctor’s order to follow. Her body has to heal itself, and nothing else can be done other than the antibiotics and the life support.
She opened her eyes today but her pupils are fixed and she doesn’t track, so the nurses and doctors in the ICU don’t give the event much importance, but we celebrated. We are grasping at straws, here.
When Leigh came to them she was “Moment to moment” so they let us in whenever we wanted, which was all the time. Now that they have her somewhat stabilized, they say they are going to start following the ICU rules. I have a plan to bake them my killer chocolate cake so they will like me enough to let me in whenever I come.
There is something called a coma scale. It starts at 3 and ends at 10. (I am learning so much.) Leigh came in at 3 and is now at 4 and they expect her to stay there for some time.
Rob is still beating himself up with guilt over what he thinks he didn’t do right. He says he accidentally blew barf into her lungs when he was giving her CPR. (Nurse said that is normal.) He said he stopped giving her CPR when the paramedics got there and they didn’t start it right away. He said he wanted his lunch early. (If he hadn’t been there he would have come in an hour later and found her dead.) He said he was grouchy at lunch. He just wants Wednesday back. He just wants Leigh back. He keeps whispering into her ear, “Leigh, I love you so much. Please come back to me, Sweet Baby, and I will take care of you.” It is tearing my heart out. I want to rock him like I did when he was little.
I am in awe of the power of a circle of friends. Thank you for your words of encouragement and your prayers. It means more to me than you’ll ever know.

Scan results bad.
They are saying 70% of her brain hac been damaged
They are wondering if her vessels to her brain have shut down.

MRA tomorrow.
Everything is tomorrow.
I don't think there is a tomorrow.

Rob is saying he is finding it weirdly interesting to sort of stand outside his body and watch himself unravel.

I don't know what to do.

He is such a realist. He says he knows Leigh is dead and somehow feels he is betraying her by not letting her body go.

Policy--Politics--Waiting
Waiting

The following are Rob’s Words

Thursday, September 22nd

I want to apologize for delivering this information by email. All of
you deserve a personal phone call, but I can not do that right now.
I have devastating news about my wife, Leigh Guinn.

Yesterday at noon, I was having lunch with Leigh in our living room
and while we were sitting down to eat she had a sudden, massive heart
failure. There was no warning.

I called 911 and administered CPR for 20 minutes while waiting for
the helicopter to arrive. She received two shocks with a
defibrillator, the fist administered by our volunteer fire
department, the second by the medivac paramedics. They were not able
to stabilize her prior to transport.

The nurse aboard the helicopter was able to get drugs into her system
to stabilize her heart and they provided breathing assistance with a
bag. They took her to Shasta Regional Medical Center where she was
attended by emergency room doctors and nurses. He condition did not
improve.

She was moved to the ICU at 1:45PM and hooked up to life support.
They ran a full body CT scan, MRI on her head, EKG, EEG, installed a
catheter in her heart, performed a heart endoscope, a spinal tap and
pumped her full of antibiotics and a variety of heart medicines.

Her doctors have determined that her heart is barely working, is
enlarged and is very weak. They are conjecturing that her heart may have been attacked by a virus and damaged it to the point where it will no longer function. In addition, she aspirated fluids into her longs during resuscitation and has pneumonia.

She is in a coma and the doctors are concerned that she may havebrain damage. Her doctors are characterizing her condition as moment-to-moment and grave.

Her mother is at her side, her father and brother are flying in from
Oklahoma and my family is at the hospital waiting for news. I will
be at the hospital until there is a resolution which I will share
with you all by email.

Please pray for Leigh. She is my life. Rob
--------------

Leigh's heart is enlarged and is permanently damaged. The degree of
the damage is unknown but a heart transplant may be necessary if that
option becomes available to us.

Her treatments are massive antibiotics to fight the bacteria they
found in her blood, heart medicines to increase the ejection factor of
her heart, steroids to reduce the swelling in her brain and increase
her batting average.

She is located in the ICU "Shock Room" which is center stage. It's a
large room with all the equipment for the most critical patients.
They tried to move Leigh yesterday but she complained by turning blue
so she remains right where she started when she came in 5 days ago.

She is on life support which is a combination of protocols, machines
and treatments which do all the work for her except make her heart
beat. She is on a ventilator that assists her breathing, she is being
fed by a tube in her abdomen attached to a machine that delivers light
brown pre-chewed food directly into her upper GI, she is on a bed that
inflates and deflates to keep moving her around to prevent her skin
from breaking down, she has wraps on her legs that squeeze and release
over and over to prevent blood clotting, she has a catheter to remove
waste, she is laying on a pad with coolant running through to reduce
her core temperature, IV lines to deliver medicine and fluids, a main
line in he femoral artery with a valve they use to take her blood and
has no fewer than 9 IV bags pumping a complex lifesaving cocktail into
her body around the clock for which I can't wait to see the bar bill.

I now have undeniable proof of Leigh's natural beauty; she carries
this burden so well.

Leigh's chest x-ray looks like the insides of a laptop computer. The
nurses go over the x-ray with me each night. I can always spot it
right away in the line up because hers has the belly ring with a big
star on it.

Yesterday and today, Leigh has again showed slight signs of
improvement although no 'purposeful' signs of life in her brain. She
has a cough response when they slide her suction tube down her throat
and she opens her eyes slightly when stimulated. However, her eyes do
not track and do not work together. She has another MRI scheduled on
Monday to determine if the swelling in her head has gone down and to
try and determine the amount of brain damage that has occurred. On
Monday, she has to show her neurologist that there is a trend towards
improvement.

Her heart has not improved.
----------------
I stayed by her side all night last night to help her study for the
biggest test of her life on Monday. If she passes it, then we get
more time to fight.

So, we have two hurdles to clear in the proper order. The dark,
mysterious hurdle of her higher brain functions and the surgical and
chemical hurdle of managing her damaged heart. Both of them seem
impossible to clear and they are telling me that together they
represent a Mt. Everest like obstacle.

Aren't lots of people climbing Everest these days? That's what I
heard.

Some of you have asked about me. I'm OK. I'm eating, getting at
least 4 hours sleep each day and I'm hovering over her bed announcing
changes in her temperature, heart rate and ejection factor to her
nurses. I tell everyone who comes in the room who she is and things
about her life so they will know who they are treating. I figure if
they don't leave in tears then I'm not doing my job. I've been told
that everyone in the hospital knows who is in the shock room.





Hello:

A few weeks ago, I was in San Diego CA working with a customer of ours.
It was Friday, last day of my site visit, and Leigh was flying her
airplane down from Redding CA, which is about 700 miles north of San
Diego, to pick me up. She took great pride in the fact that she was a
pilot. She had recently received her instrument rating which would allow
her to fly through the clouds with no visibility out of the cockpit, just
by looking at the gauges and instruments in her airplane.

As the day wore on, cloudy skies persisted and I began to wonder how she
would fare. Flying solo in instrument conditions is no small feat and
doing it for the first time by her self would be a significant event.

At around 3PM, I wrapped up my work and headed for the small airport that
Leigh would be flying into. When I got there, I spotted her airplane in a
tie down spot and I began looking for Leigh. I saw her walking towards me
from a few hundred feet away across the parking area. Her eyes were fixed
on me and she had the biggest smile on her face. She looked up at the
clouds and looked back at me and she radiated pride in her accomplishment.
I could tell she could not wait to tell me all about it. It was wonderful
to sit with her on the flight home and listen to her talk about what it
was like.
---------------------
In 1995, Leigh had only been together for about a year, and we were broke.
The business I had started in 1991 was struggling and Leigh and I worked
long days and long nights together for little more than hope. Since hope
did not pay well, we took the most valuable thing we had, a Toyota
mini-truck, and sold it to pay the rent that month and have some money for
other things like food.

We were very lucky in that we had help available if we hit bottom. If we
had told either of our families the true state of our affairs they would
have heaped support on us in an instant. But I have a stubborn streak and I
was not going to ask for help until we exhausted every resource available.

When I told Leigh we had to sell the truck, she said, "That's a really good
idea Bobby" and smiled at me. She didn't have the slightest bit of concern
on her face. I wondered if she understood what I was trying to tell her or
maybe she was in some state of shock or denial. I said to her, "Right about
now, you must be really thinking about what you've gotten yourself into by
marrying me". She told me that she had faith in me, knew that I would work
it out, and besides all that, she was having a really great time with me and
our dog Scarlet so it didn't really matter if we did not have a truck.

Her love for me and her belief in me made me fearless.

I also knew, at that moment, that she was too good for me. But I also knew
that she was too good for anyone else either so I might as well have her.

---------------------
Tuesday, October 11, 2005.

Leigh and I were married on June 24, 1995. It was a grand affair at this
giant resort in Scottsdale Arizona that her father put on and Leigh and her
mother and friends planned. I was informed early on that it did not have
anything to do with me; I was just supposed to show up on time and do as I
was told.

From my perspective, it all seemed like so much 'sound and fury' but all I
had to do was go with it and then I would get to come home with Leigh as my
wife. It was a lot of fun, very exciting and while being the center of
attention was not at all something I was comfortable with, standing next to
the center of attention made me feel good and proud. They say that your
wedding day is the happiest day of your life but it was not the true for us;
we had hundreds of those yet to come.

My Uncle asked me a few days ago if I remembered the song for our 'first
dance' as husband and wife and I had to admit that I could only remember the
band. I did remember thinking it was a very melancholy choice for 'our
song' but keeping to my role in our wedding, I said nothing. It was a song
by the Samples. He told me I should go back and listen to it.

Donor Corography

Something I have learned: Tears don’t just run down your face. They also go straight out and spatter your glasses with tiny pinpoint teardrops.
The organ donor swat team is here. They don’t think Leigh’s organs will be acceptable. They have perhaps been compromised by oxygen deprivation, just as her brain is. They don’t want to put sick organs into a person who is already sick. However, since we are in need for her death to be as meaningful as possible, they are proceeding as if her organs will be acceptable. Right now, the processes of matching tissue, locating recipients, lining up carriers, prepping the possible recipients, and prepping operation rooms is going on.
The choreography is amazing. There is no wonder the waiting list for people needing organs is so long. Leigh will now have to expire within an hour of the removal of life support. After that her organs will surely be of no use to anyone else. Each organ has a time frame of how soon it would have to be placed into a recipient.
Her corneas and skin will still be able to be used. We will be cutting her hair and giving it to “Locks of Love.”
Leigh still looks beautiful. How anyone could look so pretty with all of those tubes and wires, I don’t know. She looks quite peaceful.

For the last two days, Leigh has not responded to me or my voice. A nurse says she's probably blind. There will be another MRI tomorrow.I woke up this morning and for about 4 full seconds I thought everything was normal. Then it came back to me like stabbing knives and fists into the belly.
Results of the MRI show damage to much of her brain. The EEG shows little brain activity on the left side only.
Rob went shopping for her and got her some pink hightops and some socks. They have a boot that they alternate between her feet to keep her tendons from shortening. Rob thinks the tennies will be better.
I am wondering why we are concerned about her walking again. I'm losing hope, I guess.
Another neurologist has been called in.I'm thinking she was dead when she hit the floor.

The third neurosurgeon said that Leigh's chances of living a meaningful life from this point on are zero to none.
Hug everyone you love, because at any second they could fall over dead.