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!