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A View From the Other Side of the Bed
Eleanor Stefano, RN, MSN

I awoke in a room crowded with machinery making frighteningly familiar noises. The lights were on, but I couldn't see a window, so I had no idea what time of day it was. The only movements I could manage were to swivel my neck from side to side and a slight dorsiflexion of the right hand. [flexing wrist toward body with fingers up -- back of hand toward shoulder] I attempted to speak but was unable to do so. I was lying on my back, engulfed in some sort of large pillow and was being gently turned from side to side. Finally, a woman in what I recognized as a scrub suit came into the room and appeared to be delighted to see me awake. She told me that she was a nurse and that I was in the ICU of Columbia/JFK Hospital in West Palm Beach, FL. Thus, the odyssey began.

The nurse told me that it was September 1997, but it couldn't be. When I went to sleep (last night?) it was July and I was only three weeks into a new position as DON [Director of Nursing] at a subacute facility, very excited about all of the work to be done. I had a million questions, but I couldn't ask them. As I started to fight the ventilator, she soothed me and explained that I had a trach. At least I could then understand why I couldn't make any sound. She then went on to tell me that I had been admitted two months prior, awake and oriented and within hours of admission had gone into full blown ARDS. [Adult Respiratory Distress Syndrome: When we exhale our lungs deflate; what keeps the walls from sticking together is a substance called "surfactant" which is very much like soap ie., slippery. Because the surfactant is present, the walls of the lungs slide against each other and are able to reinflate. In ARDS there is an absence of surfactant, therefore, the lungs cannot reinflate and death ensues. Putting the patient on a positive pressure ventilator (which blows air into the lungs) and adding a quality called PEEP (positive end expiratory pressure) which causes the lungs to remain a teeny bit expanded at the end of expiration, the body can build up surfactant and allow respiration to continue as God intended.]

During the next month I spiked temps up to 105F, had a tension pneumothorax subsequent to central line insertion which led to a cardiac arrest, and was so hypotensive that even the combination of Dopamine and Dobutamine could not prevent acute renal failure. Obviously, the CPR was successful as was the hemodialysis, evidenced by the foley output q shift. [A foley is a type of urinary catheter with a balloon on the end of it to keep it in the bladder. A catheter works as a siphon--draining the urine out of the bladder by gravity. Q is a Latin something for "every". Q shift = every shift which was when they measured the urine output.]

The above information was given to me, and absorbed, over the course of a few weeks. Initially, no one knew the cause of my grave condition. However, thanks to a marvelous group of Infectious Disease specialists, the Legionella bacillus was finally isolated. This is the bug that caused the death of so many Legionaires in Philadelphia in the 1970's. So, I now knew how, what, why and when, but the question still remained - how much longer.

I remained in the ICU for three more weeks and, for the most part, was awake. There are, however, many holes in my memories of that time. One of my strongest memories is of my nightly bath. Just after midnight, two male aides would come into my room and ask if I was "ready". They were wonderful---funny and tender. However, I always thought of the experience as akin to the Cowardly Lion's stop at the "Washeteria" when he got to the Emerald City. That was where the staff splayed him out, took him apart, shook him out and combed his fur before putting him back together. I was exposed, washed, turned, brushed and combed, the whole time being teased, cajoled and conversed with. And then they left as quickly as they had come. I would then spend what seemed like hours alone, unable to reposition myself and hoping that someone would come in because I was unable to call for help. Of course, I was really only alone for no more than 15 – 20 minutes. Respiratory Therapy would come in to suction me (yes, it's as horrible as you think it is) and the nurse would come in to survey the multiple monitors and IV sites. The majority of the staff was wonderfully human. No matter what technical skill needed to be performed, they never forgot that there was a PERSON in the bed. We "talked" about all manner of things and they were always able to ease the constant anxiety attacks. There were, of course exceptions like the staff members, both professional and aides, who never made eye contact while in the room and, therefore, could not see if I needed anything. This was especially frustrating because I could make no sound, couldn't use the call bell and couldn't even shake the bed rail (every nurse's favorite attention getter). In addition to being frustrating, these experiences were dehumanizing (wasn't I important enough to be noticed?) and scary (would anyone ever notice me?).

My daylight nurse, Robin, was the most special of all. Always arriving with a smile, she looked at me one day and said, "That hair is awful. Let's wash it and then I'll shave your legs." After over 2 months, it was a blessing. Never forget the little things. Your patients will heal better if they feel better!

Within a few days of being back in the world, I thought I was truly in hell. That's when Physical Therapy started. The man actually wanted me to MOVE! I was so comfortable in my cocoon-like Roto-Kinetic bed with all my needs being met, albeit not in the time frame I wanted, and it was incredibly hard to do the things he wanted me to like making a fist and moving my feet. He also wanted me to get out of bed, which scared me witless. Believe me, the hoyer lift is not pleasant. It reminds one of a horse being lifted onto a truck in a harness and the need to totally rely on others for safety is frightening. I lasted 15 minutes the first day. Although the recliner was padded with many pillows, it was incredibly painful to sit. From that day on I resisted getting up, giving the most implausible excuses known to man. Being an excellent therapist, he would listen, nod agreement and then say "Let's get up". Oh, how I detested him! He also continued to make me do active range of motion exercises. Overall, a real monster.

I was finally moved to the step-down unit. The NG tube had been pulled (a red-letter day) and I was eating again, the trach was plugged and would soon be out and the IV's were gone. That's when my PT really became demonic. I had been standing for about 30 seconds a day for 2 days and was quite proud of myself. Then, he came into my room with a walker and said, "You're going to take a step today." I protested, complete with tears, and he nodded and patted my shoulder and told me to stand up and take a step. While crying that I couldn't do it and calling him names that would have appalled my mother, I stood up and took a step. A funny aside to this story is that there was a housekeeper in the room during this episode. She heard the entire exchange and spent a great deal of time after the PT left berating me for speaking to him like that. Funny yes, but also tiresome. She couldn't feel the pain, effort and fear involved in that one step. By the time I left the step-down unit for the rehab center I was walking 10 feet through the efforts of that sainted man.

Life in the step-down unit was another learning experience. Although I had more mobility, I still needed to be positioned and was dependent for all ADL's. Being fed and having one's face and bottom washed are three of the most unpleasant things one can experience. The feeder either goes too fast or too slow and the other procedures are simply degrading. The worst, though, was being trapped in the bed while everyone else was free to come and go. I couldn't even tend to my roommate, a confused elderly woman in pain. I was supposed to be the caregiver, yet I was at the mercy of everyone else and no one did things the way I did, therefore, no one did them right. I was told that I used the call bell too often, but how else was I to be sure that I could get help?

At the end of September I was transferred to the rehab center—the very facility in which I had been Director of Nursing for a short time before I became ill. I chose to go there because I was comfortable with the staff and I knew the care would be good. The care was good and the special attention I got was embarrassing. However, PT remained a beastly procedure. I have never been the "active" sort, preferring a wonderfully sedentary lifestyle. PT's, however are maniacal about movement. I had at least one hour of PT a day and one hour of OT. Didn't they realize that I was sick? Aren't sick people supposed to stay in bed till they recover? I resisted and they pushed and, God love them, I was walking 300 feet by the time I was discharged a month after being admitted.

After a month at home, with my husband replacing the therapists as my personal trainer, I walked back into the ICU to thank everyone. The nurses looked at me without recognition but cried and hugged my husband when they saw him. Once they recognized me, they called me their miracle and made sure some of the doctors saw me also. I also saw my original PT who danced with me in the hallway. I was only there for an hour but it was exhausting, both physically and emotionally.

The odyssey began in July of 1997. It is now April, 1998 and I have been back to work full time as the Director of Nursing for a Home Care company for four months. I'm walking daily, swimming whenever possible and riding my bike. Being on this side of the bed is wonderful!
This article has been accepted for publication in Nursing Spectrum.


Eleanor Stefano, RN, MSN,
© 1998
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  Amby Duncan-Carr,  
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Added: 04 May '98 at approximately 20:30 GMT
© 1998   Amby Duncan-Carr   All Rights Reserved.

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