Three weeks after you went into the hospital…
It’s 5:00 am when Dr. Haq (the pulmonologist) calls – He must have a
surgeon, anesthesiologist, and our permission to perform to perform a
broncoscopy. There is a clot of blood/infectious mucus that is too large
to suction from the lungs. The doctors can take fiber optic pictures
thru the intubations tube. This surgery will remove large clots and
allow oxygen flow … oh how we take our breathing for granted.
When the authorization has been signed and we are waiting a “code blue”
is announced over the P.A. system, a nurse brings us back into the hall,
just outside your room. In the room we can see Carl performing CPR and
bagging oxygen into your lungs.
It feels like a long time, but after maybe 2 minutes we hear “I’ve got a
pulse!!” Apparently the chest compressions jarred loose enough clotting
from the tube to allow precious oxygen to revive your life. Surgery is
scheduled for 7:00 AM and you’re stable when you go up to O.R. Dr Haq
says “We will do our best, the rest is in Gods hands.” When surgery is
over you look better than you have in the three weeks your stay has
lasted.
Mom and Dad brought you into the E.R. on March 12th, you
could not breathe. Leslie and I arrived the next day… the doctors did
not know if you would live. With the oxygen mask alone you were
receiving enough O2, but were unable to expel the CO2. We spent our
first night sort of fighting to keep the O2 mask on your face.
Breathing was such a struggle, and the carbon dioxide poisoning was
increasing so you were intubated on March 15th. As
uncomfortable as the tube through your mouth looked, it had to compete
with the tube shoved up your nose. The ventilator controlled breathing
was easier than the O2 mask. Sedation with depravan kept you from
fighting the ventilator, it was a drug induced coma. You were in
restraints to keep you from pulling the tube out of your throat. Even so
you managed once to remove the tube once or twice. I fought with you to
prevent this once.
You were getting nutrition through the tube up your nose; a “central
line” was placed to serve all IV needs. A drain tube was inserted in
your right lung and blood and mucus constantly flowed into a collector
on the floor. Fever spikes had been as high as 103.9 degrees; the nurses
would pack you in ice. Heart rates at 109 – 160 beats per minute,
normal resting heart rate of 67, your average 130 bpm for this marathon
of running for your life. What a great and strong heart!
After the first week Dr. Jahmal gave us a print out from the internet
page ards.org, Acute Respiratory Distress Syndrome. Mom, Les, myself,
Nancy (social worker) Dr. Jahaml & Dr. Che met to try to understand the
battle you faced. Acute respiratory distress syndrome - your lungs no
longer exchanged oxygen. They told us you would probably die, maybe a
27% chance to live. The treatment plan involved ridding the body of the
primary cause of ARDS. In your case it was pneumonia initially caused by
a strep virus and sepsis. The cure… high doses of antibiotics, rest and
time.
In order to save your vocal cords the ventilator was relocated from your
mouth to your trachea. The NG tube thru your nose was removed to a tap
in your stomach (a GI tube) for nutrition. Even this was complicated as
your blood wasn’t clotting, but eventually the doctors controlled that
and the tracheotomy was performed.
On April 15th a second drain tube was required for your left
lung. From the X-ray it looked like air may have been entrapped. But,
when the tube was in place a full liter of fluid drained into a second
collector.
After five weeks “deprevan” the paralyzing sedative used to prevent your
body from fighting the ventilator was discontinued and you started to
come out of the semi coma state. You were shocked, scared, and didn’t
understand the tubes, pumps, or ventilator. Beginning to eat ice and
drink water and being conscious of it were very different. For instance
there were times when you would be allowed to eat ice but, not drink
water?? We didn’t always understand why, except there was concern that
water could aspirate into the lungs, and that would be a disaster. You
began to write a little now with the use of your hands back, and not
being restrained, it was scratchy and didn’t always make sense but it
was comforting to have you be able to communicate.
It was a week later that you were moved from CCU to DOU (definitive
observation unit); we fought off the order the first night, to keep you
in CCU. You had been exposed to and contracted MRSA, a staff infection
that required a private room, but you were to be moved all the same, as
MRSA is not critical. I guess all change is scary, and you were scared
the first night in DOU you asked me to stay the night. Nothing
happened; I slept in chairs with warm blankets from a nice nurse. The
ventilator alarms I had learned to disarm and you would wake, make sure
I was staying and sleep again. While you were in CCU it was easy to get
to know the nurses, bring them muffins early in AM and know you were
O.K. This new unit it was hard to tell, with so many more patients and
nurses.
April 30th there was a doctor’s order signed to have you
moved to a skilled nursing facility about this time that Leslie was able
to fight, because you still had chest drain tubes. So here you stayed,
until the lung drains were removed and you were off the ventilator.
One of the first times the ventilator was to be turned off I was
visiting, so was Richie, and one of your former students, Jesse. You
were fine until you knew the breathing was “all on your own”. Jesse
suggested you think of blowing a “C” note thru a flute it worked for a
minute and then you needed breathing assistance again. I guess getting
off the machine was going to be more difficult than any of us thought.
Finally you were removed from the ventilator, it happened without your
knowledge, the doctor asked after a full day of breathing on your own if
it would be O.K. to turn the machine off. As you had been breathing on
your own for the full day! Three days later you were on and then off the
ventilator for a short time with a fever, but this passed without any
major problems.
But, there you were 130 lbs. at 6’ tall, not able to walk more than 100
feet with braces and a physical therapist. And again you surprised
everyone surpassing the requirements for their P.T. location by walking,
with braces and a walker, and you were to be released at last. Finding
that you still required IV antibiotics and wound care for the cubated
bed sores, an air bed was pumped up at Mom’s and myself with the
instruction of home nursing were able to bring you home from the
hospital.
It’s been a long haul, three months on a ventilator, four months in the
hospital, nine months from the start and it’s not over. They (nurses &
doctors) say it takes a full year to recover from ARDS. You have a lot
of physical therapy and additional adjustments to make, it is now your
time to work hard. I am grateful that the medical attention you received
saved your life. One of your primary care physicians said that there is
a reason you did not die, it’s now your job to find joy and that
reason.
Epilogue or Eulogy
“And in the end the love you shared is equal to the night. You may come
home.”
-The Beatles, White Album
One year, three months, two days after entering the hospital Terrill
ended his “Catch 22” situation. Complications from ARDS- blood clots in
his legs prevented him from continuing physical therapy. The fear of a
stroke and/or other resulting embolisms that could occur from blood clot
movement was not medicinally resolved. So, although the lungs had
healed, stamina could not be attained. He could not teach, travel, blow
his horn or return to his life as it was before.
Long a believer of the spiritual nature the American Indians shared
regarding death, Terry chose to return to God, the spirit, where all is
healed and whole.
Note from the author-
Save it, any concept , anyone may have of suicide being selfish. For
although we are all one we never experience the pain and suffering truly
of another. The pain of my mother finding my brother is too great for me
to bear, so I have waves that I bring forth and then tuck away when I’m
able, returning to a fuller acknowledgement that we are never truly
parted. I found a picture of Terry that he had sent (7/7/99) with this
written on the backside “Elaine- Unbroken, unspoken connection across
all continuum creates concerts, always secure, and sometimes silent, yet
sensed. Love, Terry” God bless you Terry and keep you until we meet
again.
The Corner of Curtis and Edna
To the corner of Curtis and Edna we’d walk
Thru your pain and discouraged spirit we’d talk
Of hope for the future and a banished past
You struggled behind your walker, my pace was too
fast
Dear Lord, I wished I’d slowed down to listen to:
Dreams of travel, trails to take, mountains to climb,
books to write,
Loves lost… regrets of relationships…not to lose one
more nights sleep
Your soul was heavy, easily winded, tired of the body
that was failing too soon
So we’d stop at the corner of Curtis and Edna and
you’d rest on the brick wall to catch your breath
And although I cannot yet comprehend my loss of
conversations we were, meant to have say twenty years from now…
I will always see your healthy self in the mountains
and the sky where you first found God. I see your reflection in the
beauty of nature, sunrise and sunset. And I wonder what we would have
talked about.
Hey! You must see “Hail, Hail Rock & Roll” a
documentary by Chuck Berry-Oh, by the way “we’ll just ask Terry” has
become O.K.