Terry's Journal

 

Elaine Olson's journal of her brother

Terry's struggle with ARDS

 

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.