In 2004, after having been moved out of the Intensive Care Unit (ICU), I became aware of a very unpleasant situation —  My ability to communicate was extremely limited due to a tracheotomy (as described in a previous posting,  Hospitalization – 2004);  And, I was under the control of people who were not my friends or my family.

Newly aware of where I had been and what was happening, a dilemma soon presented itself!

Hospital policy stated that I was to be turned every 2 hours — 2hrs on my left side, 2hrs on my back and then 2hrs on my right side.  (Despite this policy having been in effect, I now had a pressure-sore on the back of my left buttock which I received while in the ICU.)  If I was turned as proscribed I would soon be laying on the sore — which is what quickly happened!

As I was turned, the pain was immediate. I shook my head and gestured to the staff not to leave me in that position — No matter, I was left with my bandaged sore pressing upon the mattress. As the staff exited my room, I was told that someone would return in 2 hours to turn me again. Then, the ceiling light was turned-off.

I was feeling very alone in my darkened hospital room. However, I did have two companions:

  • The incessant, never-ending, sound of the breathing machine pumping oxygen into my lungs via the hose attached to my throat;
  • And, the pain coming from the only pressure-sore I’ve ever had in my life!

After attempting  to “tough-it-out” the pain became intolerable — I pushed the call-button which had been clipped to my hospital gown, hoping to summon someone to help me.

Eventually, a voice came from the speaker on the wall above my headboard, “can I help you?” I had no way to respond to the voice — I couldn’t speak!

The voice asked another question, “do you need something?”  Surely, I thought, the staff at the nurse’s station must know I can’t talk! I remember feeling desperation and panic as the sound from the speaker went silent.

It seemed like a long time, but a nurse eventually entered my room to check on me — I frantically motioned to be turned. She said that she was going to get some help and returned with an assistant. I managed to get them to roll me onto my right-side — the side I have always preferred to sleep on, and was away from the sore! The nurse reminded me I would be turned again in 2 hours.

The next time I was turned didn’t start to badly, except for my short panic when they began — how was I to deal with the upcoming pain I expected? Attempts to stop them from changing my position seemed pointless! Then, a small glimmer of hope entered my consciousness — somehow, they managed to avoid placing me on the sore.

What a relief, I thought — But, it was temporary!

The positioning I was in slowly shifted until I was again feeling severe pain.  This time, however, when I pushed the call-button three women entered my room and they did not turn-on the ceiling lights — I could vaguely make-0ut their appearance in the light coming from indirect and medical equipment sources. One of the women asked what I wanted and I gestured to be turned. Then, the one assuming authority walked toward me and said, “you were turned less than an hour ago.  You will not be turned again until it’s time!”

I resumed my pleading gestures to be turned. But, the Alpha-female would have none of it — “If you push that button again, it will be taken from you!” She turned around and left my room, with her companions close behind. The shock of what had happened began to sweep over me!  Tears soon dampened my face.

Difficult situations were very familiar to me before this incident:

  • at least four times, brakes have failed on cars/vans while I was driving;
  • other types of vehicle brake-downs have occurred while I was driving;
  • wheelchairs have broken while I was in them;
  • people bigger and stronger than I have threatened me;
  • some have beaten on me;
  • and, some have taken things from me.

Why has this particular incident changed me so dramatically that I still feel its effects — more than 5 years later?

I had an absolute and complete feeling of powerlessness!

  • I could not speak or even scribble intelligibly —  left to using gestures, I felt my communications had declined to the  equivalent of what was available before I uttered my first multi-word phrase as a child;
  • And, I could not escape my abusers — at least not until shift change, which I had no idea how long that would take.

Following my release from the hospital, almost two months after being threatened by the “night-shift terror-crew”, I came to believe I was experiencing PTSD (Post-Traumatic Stress Disorder).  I feel better today — but I’m aware the effects still linger.  Whenever my wife leaves our apartment I find myself worrying about when, or if, she’ll return.  And, whether she’ll remain healthy enough to provide the daily care I need.  Those are feelings I never had prior to 2004.

I don’t think I’m alone with my anxiety — I believe that a large percentage of people with physical handicaps or age-related limitations worry about what their life will be like tomorrow or the day after that!

How many of us want to finish our lives in an INSTITUTION or in the hands of someone we don’t know?  How about YOU — how do you feel?

Please leave a comment (the button can be found at the top of this posting) — I welcome, and read, each one.

In late February 2004, I entered the hospital emergency room with a severe abdominal pain.  After sitting in the waiting room for almost 2 hours, I grabbed a male in scrubs and told him I was in severe pain — virtually demanding something for the pain!  He lead my wife and I to a different area and said he would be right back.

Soon, I was told by a nurse to “get up on the gurney.”  And, when I told her I couldn’t do that, she adamantly repeated her instruction.   My wife explained that I was physically unable to stand, or climb onto the gurney.  Next thing I knew, someone gave me a shot of Dilaudid and I lost consciousness soon after — Following x-rays, it was learned that I had a growth around my appendix and intestines.  Surgery removed the non-malignant growth and 8 inches of bowel.  During recovery, I rapidly developed MRSA Pneumonia (one of those nasty drug-resistant staph infections that you get in a hospital and frequently kill.)

What Happened Next?

  • 6 weeks in ICU (an Intensive Care Unit, which I have virtually no memory of.)
  • Medical ventilator (a breathing machine to assist my severely impaired lungs.)
  • Tracheotomy (installation of a plastic tube through the skin into my airway, just below my voice box, to connect me to the ventilator)
  • A PEG tube – percutaneous endoscopic gastrostomy tube (feeding tube stuck through the abdominal wall into my stomach and attached to a bag of liquid “food“.)
  • plenty of super-duty antibiotics (along with prayers from my family and friends.)

After I got out of ICU, and off whatever drugs they had used to keep me in a semi-coma,  I slowly became aware of what was happening around me:

  • I could not speak — the trach had an inflatable bulb which blocked air from passing over my vocal cords while the ventilator was forcing air into my lungs;
  • I was to weak to write an intelligible note — which meant the only communication methods available to me were attempting to finger spell or use hand/body/facial gestures;
  • A feeding tube was sticking out of my belly — and I was not allowed anything by mouth;
  • I had received my first ever pressure sore (on my left buttock near my tail bone) while unconscious in ICU — the sore caused me a great deal of pain whenever I was rolled onto it (my position was supposed to be changed every 2 hours);
  • I was confined to my bed for what lasted more than 2 months — I really didn’t have the energy, desire or breath to leave the bed anyway;
  • I remained hospitalized for 3 1/2 months!

Even after I was finally gotten out of bed, I still needed to be attached to the ventilator — my lungs had been damaged and I gasped for breath anytime the hoses became disconnected.  In time, I was able to remain out of bed for an hour or two — eventually I could do it without the vent.  But, I still needed the mechanical ventilator when laying down!  And, I was taught how to speak by capping the vent tube with a finger so that the air in my lungs could be forced over my vocal cords.

One consequence of my extended hospital stay is a significant decline in strength and range-of-motion.  And, Muscular Dystrophy doesn’t permit much in the way of recovery of strength. However, the staff did manage to give me a few days of PT/OT (physical and occupational therapy) shortly before my discharge.  And, I was also permitted some jello (after a video x-ray to evaluate my performance) and pudding during my last week, or so, of incarceration —  I had to re-learn how to swallow without choking, before I could go home!

I was very glad to finally return to my dear wife.  But, I hated that she now had to do so much for me — a great deal more than was needed prior to my surgery and pneumonia.  Initially, there were many times each night she had to get up and suction the mucus from my trach tube — Whenever the ventilator alarm signaled that I was having difficulty breathing.  The need to suction while I’m in bed is a rare event today, fortunately.

For at least the 1st month I was home, my wife had to find someone to stay with me whenever she needed to leave our apartment (to go to the drugstore or the grocery store).  I was very dependent and could not be left alone — I needed a babysitter, and they had to be willing to be trained in the technique of suctioning the trach tube!

Eventually,  I regained most of my pre-surgery independence

I have never regained the strength I had before the surgery:  a hydraulic patient-lift must be used by my wife to remove me from my hospital bed each day — and to return me to the bed at night.  I’m unable to change my positioning in bed or wheelchair — my wife must do that for me.

I can do the suctioning myself, without assistance, as long as I’m in my wheelchair.  The feeding tube was never used at home and was removed about 4 weeks after I came home.  But, I still have the trach and I’m attached to the vent whenever I lay down — lungs are permanently weakened.  I can speak, with some difficulty — loudly enough to be heard, but not in noisy environments.

Items I use from the refrigerator are positioned for my easy reach — provided they are not to heavy or difficult to handle.  We have a separate upright freezer with microwaveable items within my reach, in case my wife is not around when I get hungry.  And, as a final coverage for my short-term food/water needs — I have saltines and a jar of peanut butter always on the table and four 12 ounce bottles of water on the refrigerator door!