Kevin's Greatest Masterpiece Is Played Out On My Heart Strings

by Rowan J. Ellsworth

August, 1991. I was starting my first year teaching high school math at St. John's High School in the small Arizona town of the same name. In one of my Algebra classes I met Kevin Alan Thomas, a blond-haired, blue-eyed freshman that traversed the halls of the school with more than the usual 9th grade fear. Besides the fear of initiation, faux-pas, and acne, Kevin also had cystic fibrosis, a hereditary disease that affects the body in general , but the lungs in particular. Because of this malady, Kevin had to pass on participating in the sports side of school and was turned to the gentler side, music and the arts.

As the years rolled by, Kevin's physical problems increased, breathing difficulties, walking disorders, digestive tract problems, etc., but his musical talents unfolded like the petals on a most wondrous rose! He played the piano with a feel for the music the composers must have wept over. He own compositions gave a glimpse into heaven itself. Graduation night, his fellow senior classmates chose him to perform one of his original pieces and the standing ovation that followed was heartfelt, sincere and prolonged.

Kevin had a scholarship to Eastern Arizona College, in Thatcher, but increasing symptoms of CF denied him more than just one semester there. His health deteriorated rapidly.

In the fall of 1996, Laura and Bob Humphreys, Kevin's Mom and Step-Dad, told us in church one Sunday that Kevin's condition had gotten to the point where his only chance of survival was to have a lung transplant and that most lungs from deceased donors went to other patients with a higher possibility of survival. There was a new procedure, devised by some doctors in California, that used lobes from living donors for transplantation. They then asked if any of us would be interested in helping, or knew of anyone who would.

When I first started donating blood, I was told that my rare O-type was considered to be a "universal donor," and knew the instant I heard of Kevin's plight, I would be one of the donors.

In all, there were seven who came forward as volunteers, five from little St. Johns! After weeks of screening tests which included chest X-rays, CAT scans, pulmonary function tests, blood typing, TB tests, Valley fever screens, etc., myself and Martin Whetten, a cousin of Kevin's on his mother's side, panned out as the donors. We were notified on Saturday, March 22, to report to USC-LAC medical center in Los Angeles on Monday, March 24 1997 for the surgery. All along I had through the surgery was to be in Phoenix, since Kevin was at Phoenix Children's Hospital. Kevin's time was not measured in days without the surgery.

Monday morning, I met Kevin at the Samaritan Air Services hanger at Phoenix's Sky Harbor Airport and had the privilege of flying with him to the hospital in L.A. There, we were joined by Marlin, who had flown in commercially. Kevin was immediately whisked away to ICU, while Marlin and I were ushered to the lab for more X-rays, CT scans, PFT's and blood tests.

We were also introduced to the case worker and social workers on Kevin's case. These wonderful ladies introduced us to the doctors who would do the actual surgery. They all praised us for the thing were were there to do, and then proceeded to try and talk us out of it! They explained the surgery to us and painted worst case scenarios of pain wracked donors in recovery, while the recipient died on on the operating table, and then asked us if we were sure we still wanted to go through with it. Marlin's reaction to all this was to ask his doctor if Marlin would be able to play the violin after his recovery.

When the doctor assured him he would be able to do so, Marlin expressed marvel at this miracle as he could not play the violin then! I was almost hurting myself trying not to laugh. We were quickly dubbed "The Rowan and Marlin Laugh-in" show! Whenever the staff of the hospital came into our room, before or after surgery, they expected us to entertain them and make them laugh. Most of the time we kept our end of the bargain.

Surgery had been rescheduled for Wednesday so we spent two nights in the Kawada Hotel in downtown L.A. Around one corner from the hotel was Parker Center, you know, the police building on the L.A. police badges and on "Dragnet." Two blocks away was an open air market just like in Mexico. You could buy tacos, sea food, Thai food, Chinese food, anything you wanted, fresh cooked and cheap. Another two blocks away was another "Mercado" selling everything else in the world. We witnessed drug transactions right on the sidewalk. It was a fun place to visit, just as long as you were back tot he hotel before sundown. Then it turned very dangerous out there.

Tuesday, it was back to the hospital for more tests and to be admitted. It was explained to us that human lungs are made up of parts, called lobes. Three lobes on the right and two on the left. Somewhere along the line it was decided Marlin would donate his lower right lobe, I the lower left. The procedure called for Kevin to go in first and have his disease-ravaged lungs removed, and his rib cage scoured from within to remove all the bad tissue. Then with timing derived from experience, two other surgeons removed our lobes, they were cleaned, and then inserted and attached to Kevin, no longer our lobes, but HIS lungs! Bob asked if we had had priesthood blessings yet. Marlin had, but I had not. marlin anointed me and Bob gave one of the sweetest, most sincere, humble blessings I have ever witnessed. That man is a spiritual giant. Laura's father, Brother McGrath also stood in.

Marlin and Kevin were taken into the prep room about an hour before I was. Finally, only 30 minutes before surgery was scheduled to begin, someone missed me! I was found, wheeled into prep and it seemed like 47 people descended upon me, each with their own type of needle! As I was wheeled in I noticed Kevin and Marlin had surgical caps on their heads. While someone was inserting a needle and feed line into my spine for anesthesia, a cap was placed upon my head and I said, "Look, I have a hat now. I'm am member of the clu..." but it remained unfinished and I remember nothing more until coming to in the recovery room.

A brief inspection of my situation in the recovery room revealed that I had indeed fallen in with a group of back stabbers! The incision was from just under my left armpit around to the middle of my back. I had two 1/2 inch garden hoses protruding out of my chest for drainage and to provide suction to expand the remaining left lobe to fill in the space previously occupied by my lower lobe. Also in place was the much dreaded Foley catheter up into my bladder, as well as the line into my spine that delivered the pain medication. Marlin was similarly attired only on the right side. Kevin had twice the hardware that we had.

We were encouraged to get out of bed as soon as possible and walk around. We were also introduced to a hell-born instrument called an inspired inspirometer. We were to suck on the thing at least 10 times an hour, showing what our lung capacity was. I was told Marlin had already hit the 2000 cc mark and my old competitive nature spurred me on to a 2200cc effort withing 12 hours of surgery. I found out later they lied, Marlin was nowhere near 2000 until they told him I had hit 2200! Sneaky dogs.

While Marlin fought bouts of nausea and could keep nothing down, I was on the fast track to recovery! I had those garden hoses removed within three days. (No anesthesia, just "take a deep breath and hold it," then the sensation of every lace on that hose as they jerked the 10-18 inches of it out of my chest.) Ad a day later the Foley and spinal line were removed. Except for the IV connections on my arms, I was free. They had told us prior to surgery that the optimum recovery picture allowed a donor to be home with 5-7 days of surgery. I was determined to meet that optimum. I felt sorry for Marlin who was struggling along behind me at least two days. boy was I in for a rude awakening...

Once the epidural (spinal tap_ was removed, they needed to fee me my pain killers through the IV tubes. Their choice of medication was morphine. I first noticed something was not quite right when I was walking the next day and the walls and ceiling seemed to be sagging and moving as if alive. When I would stop to rest or look out a window, the walls would sag toward me and I heard voices telling me of the strange things"they" were plotting against me. I distinctly heard voices planning an elaborate April Fool's hoax where I was was to be told all the pain was just in fun, as I had been healed days before, and we were to be treated to a trip to Six Flags and given a free laptop computer. "They" were to reveal the hoax to me at midnight.

I lay in my bed awaiting midnight and the grand revelation, but midnight came and went and the voices were laughing at me louder all the time. I was convinced Marlin was in cahoots with them so I lay there swearing at him and anyone who ventured near. Giant winged bugs with fiery eyes that spawned within me as wrigglers and then changed to adults of fire behind my eyeballs, and flying fiery serpents with fatal, painful bites flew from the walls and wriggled unchecked in and out of my bed clothes, licking my skin with their blast furnace tongues. I feared my eyeballs would explode and could trust no one.

Finally, my strength was all gone, and all hope as well. I burst into tears and could not stop weeping! A young nurse appeared and seemed to me as the last bastion of hope available for me. I grabbed onto her and held on for dear life while sobbing uncontrollable. I was sure I was dying, and tying a most horrid death.

The nurse summoned a doctor, who ordered Narcan, an antidote for the morphine that was warping my reality. She held me and told me she was going to administer the antidote, but that it would negate all the drugs in my system, letting in a flood of pain I could not imagine. I assured her the pain could not compare with the despair I felt, go ahead. no sooner had she given me the antidote than I felt as if someone had touched my forehead, and from that point my body turned to water and flowed to my spine and then down hill and out my heels. I was left with an incredible feeling of nothingness that quickly filled with pain. Driven by my hysteria, I have instructions that I wanted nothing for the pain except the strongest Tylenol they could find. This I lived on for three days! I warned Marlin not to let them use the morphine on him.

At the same time, a fever began to show up each evening. First, 100 degrees, next evening 101, then 102! An infection had taken hold in my body somewhere and they couldn't find it's source. After three days, I was given a CT scan and they discovered a widely scattered area of dried blood and fluid on the back side of my left lung, in the pleural area. This was blood left when they removed the lobe, and missed in the clean up. It was finally decided the only way to combat the infection was to remove this dried blood and fluid.

Two plans were presented. The first suggested planting a drain tube into the middle of the area and attempting to irrigate the matte rout there. The second was to re-perform the surgery basically, clean out the area, and go back to square one. If plan one did not work, plan two was the other other option. Not wanting to lose all the ground I had gained, I opted for plan one.

Marlin continued his slow progress and on the third, had the epidural removed and was put on morphine. I remember lying there in bed and he asked me if I knew the ceiling and walls moved, and I had seen the giant bugs that lived in them!

Kevin in the meantime, had been progressing nicely, but he too, now took a turn for the worse, developing pneumonia in the right lung. Tubes were reinserted into his lungs and he was reattached to the respirator. His attitude plummeted as well.

Early afternoon the next day, Tuesday, April 8, long after I thought I would be out of the hospital, two things happened that really darkened my days. Marlin, who had been released from the hospital on the 5th, was discharged and went home, and I went back into surgery to place the drain tube. To say I was disheartened is putting it mildly. I did have Bob and Marlin give me another blessing before he left. This time Bob anointed and Marlin sealed and gave the blessing. He too, is a humble man guided by faith and inspiration.

I was told to lay on my stomach with my arms over my head. In this position I was run through the CAT scan machine again to gain an accurate picture of where the infected area was. Using this information, and under local anesthesia, the doctor's used a a14-gauge, 5 1/2 inch-long needle and put a pig tail curl on the end of it. This they attached to a quarter inch tube ran to a collection bag. They also put a valve in the line that allowed them to inject up to 100 cc of a solution that was to dissolve the blood and stuff. This solution they sealed for 8 hours before opening the valve and letting anything that would drain out. The first day this resulted in a 690cc overflow. This procedure was to be continued for five days!

During my ordeal on the table, on my stomach, the 2-3 ribs broken by the rib spreader during the original surgery, were re fractured. The pain as excruciating and there was no position I could get into to escape it. All night Tuesday-Wednesday, I screamed in pain and fever. With Marlin gone, they h ad given me a new roommate, and i scared him witless. So much, in fact, they moved me to a private room on Wednesday. The only position I have found to sleep in (and used for five days) was sitting in a chair with a pillow firmly grasped to my ribs, two or three more pillows piled on the little night table in front of me, my head resting on these pillows, and a blanket over my shoulders.

The next day, Laura and Bob went home, Marlin was gone, Kevin was in ICU, and his dad, Tim Thomas (and lovely wife Bobbi) also went home, leaving me all alone, in pain, in a strange land. My moral hit an all-time low, I thought, and I called Kathleen, my wife to come to join me if at all possible.

Friday was the start of a better era. Kathleen arrived to help take care of me and this brightened my outlook considerably. Kevin had his respirator removed and he was breathing on his own again and the pneumonia was gone. Things were definitely looking up!

Sunday, the doctors declared my white count was down to normal and I had been free of any fever for two days. They said if the CT scan on Monday was clean I could go home! Monday, Kathleen and I packed our bags and sat with them on the bed awaiting the x-ray lab people to come and take me for a CT scan. About 11 AM Kathleen and I went to ICU and visited with Kevin through the window. He had just finished a session on the stationary bicycle and was being given a massage as part of the cool down process. We joked about taking special care of the left (our) side and kidded him about ordering pizza.

At about 3 pm, Carmen Housierri, the case worker, came to my room and told us that Kevin had had a "code Blue" incident at about 12:30. She said she would keep us posted on his condition.

At about 3:30, the lab people came and gave me the CT scan. It was perfect, but now it was too late in the day ( and the doctors were in surgery), to give final approval to get out of town. I was elated to be this close to being free, but downhearted to be held captive one more day. Kathleen and i went to Kevin's room to check on his condition. We saw Felicia, the director of surgery, in the anteroom with doctors and left word for her to contact us ASAP.

Approximately 30 minutes later she came and told me Kevin had gone into a full code (death) at about 12:30. They had worked on him for an hour and a half and finally got him on a heart-lung machine, but there was not much hope. I had phoned Bob and Laura earlier and given them the news and told them to get there in a hurry if they wanted to see Kevin one last time. The hospital staff would notify Tim and Bobbi. I also phoned Marlin and told him with a heart heavy laden with Kevin's bad news and my own forced captivity, I went to bed.

At about 2am, Tuesday, April 15, I awoke with a sense of terrible dread. I walked out to the nurse's station and asked them to call ICU and check on Kevin. At 2:15, Tim came and tearfully told me Kevin had never recovered and had in fact died about 5:30 pm the previous day. I went to the room where Kathleen was staying and woke her up to tell her. Numbly, I walked back to my room and cried the rest of the night.

Tuesday morning dawned gray with despair. With Kevin gone, all my suffering seemed for naught. Sure, we had given him every chance to survive, but the worst case scenario had come to pass. All I could think of was getting out of there and home to St. Johns. At 8:45 the doctors discharged me and with minutes Kathleen and I were in a cab headed for Burbank airport and a fight home. We landed in Phoenix at 11:27 and my mother picked us up and took us to lunch and then to Kathleen's parent's home to get our van. Kathleen drove us home. The hour and a half flight and the 5 hour drive home to it's toll on me. I walked in the door, hugged the kids and fell asleep on the living room floor.

Since my return home the good people of St. Johns have beaten a steady path to our front door. Some bearing fits of dinner, food, money, etc. Other just concerned and wanted to shake my hand, squeeze me, or (horror of horrors) slap me on the back and say welcome home. You see, I still have the drain in my back and will for another week. I phoned Bob and Laura and found they had driven all night to get to Kevin's bedside only to be told it was too late. They h ad them turned around and driven right back home. I have been reminded why I love this town and the people in it.

I still have pain and a long road of recovery ahead and the knowledge of Kevin's death does something to me inside. I know I will survive and the Lord will bless me for my part in this saga. The autopsy revealed the lungs were working wonderfully well, but Kevin's heart had just had enough and stopped beating. Heavenly Father had other plans for Kevin Thomas. His obituary listed him as a composer and musician. He was truly that. He helped me compose my life. I now truly love my wife and family and cherish any time I am with them. I have felt the cooling saving caress of a hand from my father during times of anguish and despair. Whether the hand was my father who died, my Father in Heaven, or my Elder Brother, I know , not but I know he protected and comforted me. I felt my Father's breath on my forehead as He whispered, "Fear not, I am with thee," and felt His lips kiss my breast, over my hear! I owe Kevin more than I can ever repay. I just pray I can live my life as a fitting memorial to him.

Today, Tuesday, the 22nd of April, I went to the doctor in Springerfville to get the drain tube taken out of my back. He had discussed the procedure over the phone with Dr. Hagen in California and was ready to remove it. As with everything else involving me, this too, did not go according to plan. Using no anesthesia at all, Dr. Nelson had me sit on his table and he asked about the procedure and the tube. I told him Kathlee and noticed I had lready torn out otw of the stitches holding it in place and though only two more remained he cut those two, turned a screw Dr. Hagen ha dtole him would relax the pigtail, and tole me to lake a deep breath and hold it. I knew immediately what was coming, I thought. First there was one more stich he had missed. It burned like fire when he pulled on it. Heapologized and cut it free. Next, the pigt tail wouldn't relax. Dr. Nelson said the screw was brusted. SO he just started pulling the thing out with the pigrail still curled in place. The pain and sensation of it being pulled through my back muscles made me queasy and I broke out in a cold sweat. I told him I needed to lay down and he helped me onto my side on the table. He then continued to haul on the thing until it finally came out with a loud sucking pop. He then said, "Oh, now I see how it was upposed to work!" I was given the tube as a souveni r and a baing aid for my back and sent on my way.

Now I'm completely free of surgical emcumberances. I am truly on the road to recovery. After having time to think about it, I can say I would do it all again, given the same pre-operation information and Kevin's condition.

Rowan Ellsworth
25 April, 1997