Day 92 - Bonnie able to go from Sitting to Standing for a few seconds

Today is Day 92 and Bonnie is at Coastal Rehabilitation Hospital which is a part of New Hanover Regional Medical Center.  She is getting amazingly good care.  

Because Bonnie is immune compromised she has been put into a private room.  This is very unusual in a rehabilitation setting.  Her nurses wear masks and gowns and swab down the exercise equipment before she uses it with super-duty anti-biotic, anti-fungal wipes.  Bonnie is relieved that she is being so protected.  

Bonnie is able to transfer from her bed to her wheelchair and wheel herself into her bathroom and transfer to the handicapped toilet.  She is able to urinate normally.  What a relief.  She had her PIC line removed and thus is completely tube-free.   She was able stand up from a seated position using her walker and stand for 20 seconds.  Wow.  

Bonnie's nurses have called-in doctors of many stripes to help Bonnie get off as many of her medications as possible.  Bonnie has been taking so many drugs with dire side-effects, that she has been having to take drugs to counter the side-effects of other drugs:  3 grams of Cellcept can cause heart problems which require a beta-blocker, etc.  By the end of this week Bonnie should have all of her medical ailments, future procedures and medications lined up.  She is seeing different surgeons, an internist, an infectious disease specialist, a hematologist, a dentist, and ophthalmologist in addition to her physical and occupational therapists. 

Being exposed to a rapid succession of medical specialists can be devastating to one's health.  Each specialist is striving to make sure you do not die of the disease he is treating you for... but often there is NO ONE coordinating your medical care.  In this setting, mistakes are common. 

On Day 80, Bonnie had her routine post-surgical.  She went to see the Duke vascular surgeon who had amputated her toes and forefeet three weeks earlier.  Routinely the surgeon examines the surgical wounds and removes the stitches.  Apparently, when Bonnie's surgeon discovered the blood clots in Bonnie's thighs, she "forgot" to remove the stitches in Bonnie's feet, though they were obviously starting to become ingrown 21 days after her surgery.  

Even though Bonnie was re-admitted to Duke Hospital and was visited by Duke Vascular Surgeons, and Bonnie had the dressings on her feet changed daily, no one took care to remove the stitches that were becoming covered by healthy tissue.  Only when Bonnie was at NHRMC for a couple of days did a nurse notice, 31 days after Bonnie's surgery, that her stitches were ingrown and overdue to be removed.  But since the stitches were now so ingrown the nurse could not do so.  She had to call for a surgeon.  The surgeon arrived the following day with morphine, and sharp tools.  It was a bloody and painful session to remove a few dozen coarse black stitches that were binding Bonnie's amputation wounds shut. 

You would think that there is a simple pre-surgical and post-surgical checklist.  Here is an article by the Dr. Paul Levy, CEO of one of Boston's largest Hospitals regarding hospitals' unwillingness to use such checklists, even to control infectious diseases.

In response to this article, Dr. Brent James writes that we are 'Moving from “medicine as individual heroism” to “medicine as a team sport”'   But we are not there yet because individual doctors are accustomed to practicing “the craft of medicine.”  It’s the idea that every physician (or nurse, or technician, or administrator, etc.) is a personal expert, relying primarily on their personal commitment to excellence. In a very real sense, every physician occupies his/her own universe, with its own reality, truths, physical constants."

These insightful comments are from first-rate doctors talking among themselves about the state of medicine today, not from a patient advocate with an axe to grind. 

So, in light of our current health care culture, patients and advocates must keep the big picture of the patient's health and well-being in mind.  Patients and advocates need to make written notes of all medical actions taken, and all action items for follow up.  Clearly, I fell down on this count regarding getting Bonnie's stitches take out in a timely fashion.  Similarly, patients and advocates need to keep records of all drugs and conditions being treated by drugs, so when a condition is alleviated, one can ask for that drug to be discontinued.  

Almost every time we have changed hospital or changed floor within a hospital for 6.5 years we have discovered that drugs have either been discontinued when they need to be continued, or allergies lists are misplaced, or drugs are continued long after they are no longer needed.  This is the cost of medicine being practiced as a craft. 

You and I can hope that the doctors and nurses and computer systems will catch such oversights, but prudence and experience argue that you had better take care of these issues yourself.  

The costs of failing to be vigilant is pain and suffering, or worse.  

We are currently looking for a doctor who will become Bonnie's ombudsman.  

/Daniel for BanD