Thursday, December 13, 2018




A major threat to quadriplegic patients like Tina is infection, especially respiratory infection and, secondarily, bedsores. If Tina gets the flu, certain antiviral medicines may help, but basically she is on her own—her immune system must create the antibodies that destroy the viruses.

Each fall, flu vaccinations are made available to combat the current version of flu, which is different every year. In 2009, a second version, H1N1, became a threat as well.

Tina and I each get vaccinated. For people in their 60s, as we are, it reduces our risk of catching the flu by roughly 50 percent. We require our nurses to get the shots as a condition of employment, made clear in the interviews we do in selecting new hires. This reduces their risk by 50 percent or a bit more, except that some of them are in contact with large populations of institutional patients who are more likely than most to catch the flu.

In 2010, there was controversy surrounding the safety of the H1N1 vaccine, which controversy seemed to me to be overblown. Regardless, we required this second flu shot, not for the benefit of the nurses, but for the benefit of Tina. Nursing means you take certain responsibilities and some added risks, for example, you drive to work when the roads are slippery. Four of our nurses strung us along several months, not indicating they would not get the H1N1 shots. When they did not get the shots after a month’s warning of our deadline, they were fired.


Your skin protects you from infection. Remove even a modest fraction of it and microbes will overwhelm your immune system and kill you. Antibiotics can wipe out some of these organisms, but some have evolved to be multiple-drug-resistant strains that we cannot yet defeat.

Lying in bed (or sitting) motionless keeps pressure on portions of the skin near the supporting bones. Blood to these areas is not supplied or removed in normal amounts, so cells begin to die. Altering the patient’s position frequently can prevent this. Urine and fecal matter can irritate the skin, making it more likely to fail. Sliding associated with being moved can exert shear forces that can tear the skin. Once such a sore, a bedsore, develops, the patient is at risk for systemic infection and death; thus, bedsores must be prevented, and treatment started at the first sign of a developing problem.

We had one such sore during Tina’s paraplegic period (1994-2004) and one during her current period of quadriplegia (post 2004). The first was due to inadequate attention by a home health aide and me. We should have changed her position more frequently and taken greater pains to keep her clean and dry.  The second bedsore resulted during hospitalization, with unusual urinary and bowel incontinence as contributing factors.

At home we have taken many steps to prevent bedsores. We have an air mattress with a checkerboard pattern of air pockets: when the “black” squares are up, the “red” are down and vice-versa, thanks to the action of an air pump that every few minutes changes from inflating one air path and suctioning the other, to the reverse. We also put her on her side a total of a few hours each day. Being placed on her side is less than optimal for Tina, because she cannot rest as well or see the TV as well, but it works out, especially during daytime naps and some periods in the overnight shift.

Our staff has told me horror stories of fist-size bedsores down to the bone on nursing home patients who received inadequate care. By that stage the sores are deadly. Too many patients, too few staff, poor morale among the staff all can contribute. Once a bedsore starts to develop, it is admittedly a challenge to reverse.

Christopher Reeve was the well-known actor (Superman) rendered quadriplegic by the severing of his spinal cord in an equestrian accident in 1995, the year after Tina became bedridden. We closely followed developments in his case. Until 2004, he wrote and spoke as though he believed his spinal injury would someday be cured. That year he stated that he had lost that faith; bedsores recurred, despite presumably the best of care, and he died from the infection or from a reaction to the antibiotic given to treat it. Small, but deadly are bedsores.

We care for Tina’s skin very, very diligently.

         Bedsores, also referred to as “ulcers” or “decubitus ulcers” develop because of lack of blood flow to the skin tissues that are pressed between bony prominences and relatively hard bedding or chair surfaces or because of shear forces from sliding contact between the skin and such surfaces. In her treatise for Continuing Medical Education for nurses, Treating Pressure Ulcers and Chronic Wounds, Maryann Mamou (2014) goes into detail. She cites the Centers for Medicare and Medicaid Services (CMS) support for her statement that “a pressure ulcer can develop in at-risk patients within 2 to 6 hours of the onset of pressure.”
           Such sores are serious. “There is a 2 to 6 times greater mortality risk for patients who develop pressure ulcers. In acute-care hospitals, patient risk for acquiring a pressure ulcer is estimated to range from 14% to 20%.” (Mamou, 2014)  Indeed, during our younger patient’s 100-day stay in the critical care unit, she quickly acquired such ulcers on her heels. Immobility raises the risk greatly. Mamou (2014) cites research showing “At any given time, 17% to 39% of the spinal cord injured population has a pressure ulcer.” Once one develops, it often recurs, “between 40% and 80% of patients who have had pressure ulcers will develop another one.”

         The sores can range from Deep Tissue Injury through Stages 1 to 4 in increasing degrees of seriousness. Any indication of a bedsore should trigger remedial action, including increased frequency of change of position, upgrade in mattress design or materials, additional padding and bandaging at the site. The availability of help in treating and transporting the patient will influence the choice of treatments as well. While the development of such sores suggests inadequate care, this is by no means always the case. Elderly patients, especially, may have such fragile skin that even skilled nursing treatment is insufficient to prevent such sores. Patients with cognitive deficits will be unlikely to be able to care for themselves.

         Mamou (2014) notes “Many respiratory problems can lead to wound development.” This makes sense, as a major factor is inadequate oxygen supply to the tissues at the site, accelerating damage and retarding healing. Steroid use can slow tissue repair, as well. It follows that cardiovascular deficiencies can also accelerate development of the sores and impair healing. 

         Gastrointestinal problems complicate matters (Mamou, 2014): not only does reduced nutrition slow healing, but the presence of loose stools or even diarrhea causes chemical damage to the skin. Similarly, efforts must be made to keep the skin clean and dry, difficult where incontinence is encountered or where the patient is dependent on disposable diapers. Too little water has its own negative effect (Mamou, 2014): “Dehydration impairs wound healing by decreasing the blood volume available to transport oxygen and nutrient to healing wounds.”

        Diabetes raises blood sugar levels and impairs the immune response, thus slowing healing. Obesity puts added pressure at the contact point, and fat tissues are poorly supplied with blood vessels. Information on wound assessment and wound healing is of importance to the nursing staff, less so to the manager. The most common wounds are “partial-thickness wounds,” and (Mamou, 2014) “the most important consideration with partial thickness wounds is to keep the area moist and clean. It is important to remember that a dry cell is a dead cell.” This goes against one’s initial thinking: if moisture can contribute to causing the wound, why would it be beneficial? Apparently, the key is protecting the sore from the irritating moisture of urine or damp feces.
        Managers should expect that dressing changes will be accompanied by cleanings. “The Agency for Health Care Research and Quality (AHRQ) recommends that all pressure ulcers be cleaned when first diagnosed and then with every dressing change.” (Mamou, 2014) The goal is to remove loose skin and prevent the growth of bacteria. Normal saline is fine for cleaning, squirted with a syringe, perhaps with a wound-cleansing agent. Dilute bleach or dilute iodine can be used for disinfection, although potentially irritating.  
        Mamou (2014) notes that pain management is important. Analgesic can be given about half an hour before the treatments. Certain elements, such as dressing removal, should be done at a pace acceptable to the patient. “Tape should be avoided on fragile skin.”
        Wound dressings provide cushioning and a barrier to microbes but must both wick moisture from the surface, yet not make it too dry. A nurse with a wound-care specialization is likely to be needed for all but the least severe cases.
        This treatise by Mamou we highly recommend for nurses and managers involved in a situation involving wound care. It is available as an ebook from Amazon.


We see a pulmonologist four times a year, a throat surgeon four times a year, a general practitioner as needed, typically several times a year. If something is amiss, there will be tests and scans, hither and yon. We bring our most recent records. We record the results of the visit in a book dedicated to doctor visits.

Each trip requires the life-support equipment. Each trip is an adventure, because if the specialized van breaks down somewhere, we’ll have major trouble. The van’s lift requires electric power, without which Tina is trapped in the van. If the van’s doors jam, the same problem results. Even if we get her out, what next? Call 911 and transfer her to a stretcher and take her home. Don’t forget to bring the cell phone.

The consequences get more serious if we are brought to a halt during a summer trip. Heat is very hard on MS patients, as it aggravates the deficiencies in the insulating properties of the myelin covering the nerves. In the winter, cold is the threat. We try to schedule most of our trips for the spring and fall, the more temperate seasons.


The doctor trip from hell would be one where our special van breaks down on a lonely road in the winter or the summer, with an electrical failure. No heat, no air-conditioning, no power lift for entrance or exit from the van, with Tina stuck inside. As I write this section, on April 25, 2011, we had just had a somewhat-less-than-hellish trip.
The multi-specialty doctors’ practice in Middletown is about twenty miles away, typically a forty-minute ride, plus loading and unloading time. We allocate an hour each way. For this trip, we had originally scheduled back-to-back appointments with two doctors in the group, a pulmonologist and a new gastroenterologist, to save us from having to make two trips. A few days previously, we were told we had to postpone one of the appointments, because Medicare does not pay for two doctor visits to the same practice on the same day. We put off the pulmonologist for a few days.
The van’s motor started up well, despite not having been used for a few days. The horn was strangely anemic. The power lift rose more slowly than usual in getting Tina into the van and descended more slowly in delivering her to the doctors’ parking lot. An electrical problem? Stay tuned.
We waited almost an hour for the gastroenterologist. When we saw him—presentable, articulate, speaking rather good English, though a bit too softly for my poor hearing—it became clear that Tina’s feeding tube was not going to be changed then and there, as we thought it would be. No, no. You can't have fed her within five hours of the procedure (which itself is often done by nurses and takes about five minutes). No one had warned us of this. Furthermore, they had no gastric tubes on hand. You have to bring your spare, then they use it and give you a prescription for one or two more. No one had told us this, either.
When I explained the inconvenience of making two trips, the doctor informed me about the Medicare reimbursement rules, emphasizing that he would not lie for us and claim we had come a different day. Charming. I might have said I would not lie for him and tell someone else that I thought his practice was well run, but I did not. I’m more charming than he is, surpassing a low standard. We used this man because his predecessor gastro kept us waiting a couple of hours without a warning of any kind. What is it with the gastro guys?
After making a new appointment for a week later, we packed up our gear to take our van home. I turned on the ignition—and nothing happened. No gauges moved, no radio came on, certainly no starter motor was motivated. Dead. We tried jump-starting, with the help of the kindness of strangers. No luck. I called AAA. The van’s electrical system was too complex for local garages, because of the power-lift modifications for the wheelchair. We called an ambulance and got Tina into it, transferring her from wheelchair to stretcher and folding up the wheelchair to squeeze it into the vehicle. We had wanted an ambulette (wheelchair, not stretcher) service, which would take us all and leave Tina in her chair, but the listing in the Yellow Pages was not sufficiently clear.
Much waiting ensued. Tina, our nurse, and I all were patient. We were in the temperature-controlled waiting area of the office building containing the medical practice, safe and sound. We had two oxygen bottles with us. Nothing really bad happened. Of course, nearly a thousand dollars in ambulance and towing fees were put on the credit card. It’s only money. Better yet, it’s only plastic.
In a few days, we were scheduled to return to the same practice, this time for a pulmonary check-up. We could hardly wait.

Postscript: We junked that van and bought another, newer, used van, one whose exit access was not dependent on electrical power, so that we could get Tina out of it even without battery power.


Contact information:
Diane R. Beggin, RN
40 Sycamore Drive
Montgomery, NY 12549

Our book is available from,, and How to Manage Nursing Care at Home

No comments:

Post a Comment