Bonnie Recovery

Day 80 - Readmitted to Duke Hospital - Blood clots affecting Bonnie's feet.

Today is day 80 and Bonnie has made remarkable progress in her rehabilitation.  This is a long post to catch up on Bonnie's current physical, and emotional states and our ups and downs.  I apologize for our lapses in posting every other day; it is a cost of being preoccupied. 

The GOOD NEWS

Bonnie can now can sit up in bed and swing her legs over the side on, all her own.  These are skills re-learned at Durham Rehabilitation Center.  Bonnie can transfer from her bed to her wheelchair and goes to Occupational Therapy for an hour each day.  She then goes to Physical Therapy for 2 one hour sessions per day.  She has been able to be up and out of bed for 4 hours almost every day. 

According to the Occupational and Physical Therapists Bonnie is making remarkable strides for a person who has been flat on her back and confined to bed for 70 of the last 80 days.  40 days ago Bonnie could not lift her legs or even touch her face with her hands.  As usual Bonnie is exceeding all professional expectations.  Oh Bonnie, how deep is your well? 

This week Bonnie was able to wheel herself into the shower, transfer to the shower chair and wash her own hair and body.  Ahhhhhh.  This is wonderful progress in so many ways.  Self-care is an Act of hard won Freedom.  Too bad there are no Medals of Freedom for patients who MAKE their way back to a state of self-care. 

Last night we dined on a prime rib that I smoked over chunks of apple-wood.  I kept the pit at @ 275 F and pulled the side of beast out when it reached an internal temperature of 130 F, allowing it to cruise to 135 F as it rested.  I brought Bonnie the center 4 ribs and creamed horseradish sauce.  Bonnie loved the delicately smoky flavor of home cooking.  The prime rib came out to a perfect medium rare, that even survived reheating in a microwave oven.  I loved seeing Bonnie feel more like a whole human being eating her favorite Texas BBQ beef, on our home china, using her own chic stainless steel flatware, and watching the News Hour.  Bonnie remains mentally and politically acute.  She could probably still win a debate on fiscal policy with the likes of William F. Buckley.  She has learned to make her points with remarkable concision. 

The LESS than Good News

On the other hand. Bonnie has been repeatedly knocked flat by so many different biological challenges to her existence, over such a long period of time, that she now has some emotional and social rehabilitation to do.  She has lost some of her social conversational skills and timing, and speaks from the space of "a disabled, long-term patient".  Bonnie feels pitiful and looks frail.   She lives in this condition.  She responds to the conversations and love extended to her as IF such is done out of pity or pathos.  What gets lost are Eros, Philia and Agape - the simple love and sincere appreciation of Bonnie as a being-in-the-world, who is a pleasure to encounter, in most every conversation. 

Here is what works to un-stick Bonnie from the "disabled patient listening":   She loves conversing about the house improvements in preparation for her graduation from the Durham Rehabilitation Hospital and being at the beach by her 65th birthday on 20 January.  She aims to see Obama inauguration from her own black leather glider chair on her own Pioneer Kuro Plasma HDTV.  The queen of Broadband deserves no less.  Bonnie has already called Jennifer to arrange a play-day with her NC grandkids for Sunday 19 January at the beach house.  

Working on our book has Bonnie engaged in a world much bigger than ourselves.  She brightens up immediately and focuses on the how to illustrate the different domains of competence that are required to be a successful patient.  And of course, when she tells the latest stories about our grandchildren she is transported to a different space.  It is as if she is instantly surrounded by angels. 

Others people may be able to engage Bonnie in conversations about her Spiritual Direction work at her church. 

Friends from EDS and Bonnie's churches:  Please do engage with Bonnie on your spiritual life and her calling to do Spiritual Direction, by e-mail or phone as you think may best serve faithful conversation.  Bonnie needs people who are truly "up to the conversation" and who have a shared background.  I encourage Bonnie to speak with her wonderful mentor and colleague, William Barry. 

I see that I need to follow-up with the Chaplains at Duke and Durham Rehabilitation, so she gets her beloved sacrament delivered so she can commune with the Infinite every day, in her way.

What YOU can DO to help Bonnie Socialize

Bonnie also needs social engagement.  Since she is so interrupted by nurses, e-mail maybe the best way to hold an uninterrupted, high fidelity conversation with Bonnie for the next few days.  Let the spirit guide you.

What is up with Daniel

I had rough and short sleep, with nightmares of physical fights with my father.  I did well in the first three rounds.  In the last two rounds, my father  began to overwhelm me physically.  My father was amazingly physically strong until the last week of his life.  I am not sure which parts of my self are in what kinds of struggle with "me", but it was a choking experience.  I was saved by a 7:30 AM wake up call. 

Adventures just getting to the Duke Clinic

I made my way to Duke Hospital for Bonnie's post-surgery checkup on her feet.  At 8:30 AM on the surgical floor I was told that there is no 3B at Duke Hospital.  I needed to drive to the Duke Clinic.  I asked if I could walk.  Yes, but it is a long way and complicated.

I walked a very long way, got lost, and discovered that there IS NO 3B in the Duke Clinic either.  I called Bonnie.  She still had not left Durham Rehab which is half an hour away.  She had to call the Duke Surgery Dept, only to discover that they had given her the wrong floor number.  She is coming to 2B.  I am concerned that Bonnie is going to be late for her surgical checkup.  This is also going to make us late for her post eye-closure, Cornea checkup, which is critical and on the opposite side of the Hospital complex, three or four buildings away. 

It turns out that the nurse supervisor at the Durham Rehab Hospital would not let Bonnie leave their hospital with 150 cc of urine in her bladder.  They check Bonnie's bladder 4 times a day with an ultrasound machine. 

So Bonnie had to transfer back out of her wheelchair and street clothes and into her bed so she could be catheterized to pass urine.  The nurse on duty was not at all practiced at "installing a catheter".  Even with lidocane Bonnie had to endure some painful fumbling around.  They had to call in another nurse who was skilled at this procedure.  Bonnie has not yet recovered her capability to discharge urine on her own even though they have removed her Foley a week ago.  

Can you imagine having to be catheterized 4 times a day, for a week?  Add this to weeks and weeks of being stuck twice daily for glucose tests and insulin shots, along with daily blood draws of one or more vials of blood.  Oh, and then being awakened two or three times each night for blood pressure and temperature readings. 

Adventures in Health Care at Duke Clinics

Bonnie arrived to the Duke Clinic 2B in her wheelchair.  She looked pretty frail, with her left eye sewn shut, clutching a brown fleece blanket around her shoulders to stay warm.  Bonnie had to sit in her wheelchair and wait - for over an hour - before having her vital signs taken.  We were put into an exam room to sit for another 15 minutes. 

The nurse who finally came in to remove Bonnie's gauze dressings was remarkably obese.  It was difficult for her to reach down and remove the dressings.   She got the gauze caught on some very tough protruding black stitches that close Bonnie's amputated forefeet.  The nurse pulled some of the gauze free, causing Bonnie to vocalize her pain.  Bonnie had to ask the nurse to cut the last bits of the caught gauze with a scissors to spare her more pain. 

We all stared at Bonnie's very dark-red, mottled feet.  They do not look good.  The nurse leaves, saying nothing about the elephant in the room  We Wait.  Sit. Wait.  The doctor came in about 20 minutes later.  

The surgeon was pleased to see Bonnie's wounds healing well.  But we were all very concerned by dark-red mottled coloring of the skin covering Bonnie's feet.  We discussed whether this could be from Prednisone.  The surgeon feared it was a circulation problem.  We would have to wait for a Ultrasound exam.   

Bonnie was clever enough to ask if we could go to her eye exam and come back.  We hoped we would not have to wait at the end of a long line.  They approved this strategy and so off we went.

How to Get Admitted to an Examination Room Immediately

As we leave the General Surgery area of the Duke Clinic, I asked for directions from some uniformed people, who look like Medivac Transport pilots.  But the first two guys were very aloof, seemingly distracted.  Strangely they did not know their way around the hospital.  I began to read their patches on their baseball caps and jackets which read, "FCC Butner".  What is FCC Butner?  

I count 6 uniformed guys standing around the check-in desk.  I begin to gather that they are some kind of cops.  Then I see a guy in a wheelchair being wheeled in.  He has heavy handcuffs holding his wrists to his waist and matching leg cuffs   He exudes disdain and a strange sort of arrogance for a man so completely chained up.  He is immediately followed by 2 paramilitary guys in flak jackets, each holding a black machine gun at the ready.   The whole entourage is waved in: 6 guards, a wheel-chaired inmate, and 2 guys with machine guns disappear down the hall toward the examination rooms.  I imagine them all crammed into a room like the marching band in the alley at then end of Animal House.  Google confirms that FCC Butner is a Federal Prison.  This guy is a maximum security flight-risk. 

I am beginning to see how to get admitted right away without waiting, no matter when you arrive.  

Wheel Chair Races Between Appointments

I push Bonnie in her wheelchair out of the Duke Clinic and through the outside passage that snakes around and around.  It is raw, wet and cold outside.  The outdoor covered passage is several blocks long.  The Duke Eye clinic is at the opposite extreme of the Duke Medical complex.  We arrived an hour late for her eye exam.  We had to wait for about an hour before getting into an exam room.   Then waited for half an hour in the examination room before getting down to the heart of the examination of Bonnie's transplanted and now ulcerating Cornea. 

Moderately Good News on Bonnie's Cornea

Good news.  Finally, good news.  Bonnie's transplanted cornea had regained it's coverage of epithelial cells.  The cornea is still dented and thinned, but it is no longer "melting".  This exam was confirmed by Duke's Chief Ophthalmologist.  Bonnie is currently saving her transplanted cornea. 

We are going to leave Bonnie's eye sewn shut to continue to give her cornea protection and more time to heal.  One eye surgeon had to remove yet another stitch from her left Cornea.  Bonnie just sat forward in her wheelchair to rest her chin on a plastic support, and had yet another surgical procedure done on the most sensitive part of her eyeball. 

Imagine what would have happened to Bonnie's eye in the Rehab Hospital, if I had not seen what the Duke Bone Marrow Transfer doctor completely missed in Bonnie's pre-operative examination on 15 December.

More Waiting Around - 6 Hours in a Wheelchair

For Bonnie, a minor bit of eye surgery with a local anesthetic to her eyeball is "no problem".  Bonnie is instantly ready to scoot down the hall as if nothing happened.  We are off for a trek back through the Duke Hospital, out along the outdoor passageway for several blocks.  Before we venture out into the cold weather we pull up Bonnie's brown fleece blanket to form a hood over her head.  Bonnie looked like a Bennie Buffano Madonna sculpture rolling toward toward her next appointment. 

Bonnie had to wait another hour.  Bonnie had now been in her wheelchair for 6 hours, two hours longer than she spent weeks building up endurance to tolerate, with no bathroom breaks.   

Bonnie is looking more and more frail.  I ask the receptionist how long it will be?  She says she does not know.  I explain that Bonnie was transported here from a Rehabilitation Hospital and she can only stay up 4 - 5 hours a day.  I point out to the receptionist that Bonnie has been in her wheel chair now for over 6 hours.  I get that blank bureaucratic look.  No compassion.  Sealed mouth.  No apology.  But most critically, no change in her actions. 

Clearly Bonnie needs to be in handcuffs and I need a baseball cap and machine gun. I will see what I can do next time.  We notice that when there is a danger to the doctors and staff, responses are quick.  When there is a danger to a patient, responses are institutional and indolent. 

I finally ask the surgical receptionist to call transport to arrange to have Bonnie go back to her bed.  It will be 90 minutes more before she can get to rest in a bed.  She arranges transport and seem to get busier about getting Bonnie into the exam room just 150 feet away for the simple ultrasound exam.

Daniel Burns Out

I lose my willingness to observe this level of health care.  I go to get a fruit juice.  I return after 20 minutes.  Finally they take Bonnie in for the ultrasound exam on her feet.  I am clear that I have burned out.  I calculate that Bonnie does not need me to go through an ultrasound and I can not go in the transport back to the Rehab hospital.

I go find Bonnie and ask if I can go back to the hotel while she has the exam.  She says yes, go, go.  She looks really pale, blank and tired.  

Bonnie gets "LOST" between hospitals

A couple of hours later I get a call from the Bonnie's Case Supervisor at Durham Rehabilitation Hospital, wondering where Bonnie is.  Their AAA transport has not been called yet.  Oh man, the Surgical Department of Duke Hospital has lost my wife, again. 

I call Bonnie on her cellphone.  She is outside in her wheelchair in the cold wet air, waiting for the AAA transport.  

She tells me the ultrasound technician informed her that she has multiple blood clots in her thighs that are causing circulation problems in her feet.  She told Bonnie the Doctor would be "right in" to see her.  Bonnie said she would wait ten minutes and then she had to go back and get into a bed.  She simply could not sit up any longer.  The technician said "No, no, the Doctor will be right in".  Bonnie waited for 15 minutes for the surgeon, but the surgeon did not come back.  Folks, this is at one of the "Best Hospitals in the US" according to US News and World Report.   

When the wheel chair transport guy showed up, Bonnie went down to wait for the AAA transport van so she could finally get back to her bed at Durham Rehabilitation.  It is now 8 hours of being up and out for the first time in 80 days.  A catheter now sounded like a "great idea". 

After 3 calls with Bonnie, I discovered that a nurse from Duke Vascular Surgery chased down after Bonnie and found her waiting outside for her AAA transport.  Bonnie was informed that since she has multiple blood clots in her feet, she has to be admitted to Duke Hospital for more treatment.  Bonnie objects.  She is told she has no choice in the matter. 

Re-Admission to Duke Hospital

Does it surprise you that our frail Bonnie turned out to be the real flight-risk in the face of indolent care? 

The "health care" continued as Bonnie had to go back up to the Duke Clinic and endure a catheterization without lidocane attempted by a wonderful nurse, who unfortunately had not inserted a catheter in 25 years or more.   After 5 minutes of pain, another nurse took a try while the first nurse held Bonnie's legs down and apart.  Bonnie says she was in pain for a very long time.

It took Duke Hospital 4 hours to get Bonnie into a bed.  She would have been better off going back to Durham Rehabilitation, getting into her own bed and catheterized there by professionals.  She could have easily transferred to Duke Hospital when they actually had a bed ready for her.  But nope, somehow she had become a ward of Duke Hospital and their institutional rules, truly rule; patient pain and suffering is simply "unfortunate".   

Bonnie is now on the 8th floor at Duke Hospital in a surgical unit.  She was being wheeled out for a chest scan.  We agree that she will INSIST on getting a good PIC Line inserted this time;  no 2 AM wake-up procedure attempted by a resident/novice this time.  I ask Bonnie to insist on a skilled practitioner;  someone who can get a PIC line into Bonnie's beleaguered veins in the first 10 minutes of the procedure.  I pray that Bonnie really does insist.   She is becoming a "too compliant" patient for her own good. 

I am going to take a sleeping pill and see if I can get 8 hours of sleep so I can go and help Bonnie get her current full diagnosis and treatment plan for the blood clots.  Then I have to go over Durham Rehabilitation Hospital to clear out her room of her beloved radio, prayer book, medications, diaper wipes, butt rub and eye drops, computer and pictures of her grandkids. 

We have the permit to install the Stairlift for our front stairs and the permit to rebuild the steps and front porch.  We are working on yet another permit to put in a concrete pad and driveway so Bonnie can get around in a wheelchair, or walker or cane as she progresses.

I am going to also dilate the focus of my care.  I need rub Bonnie's skin all over with Nivea skin moisturizing creme and comfort her.  I am going to have the hair dresser wash her hair again.  We need to continue sit and hold hands and create a future with our grandkids asking her to read them a story and to tuck them in. 

What YOU can Do to help Bonnie

Bonnie needs her friends and family now, to help her be engaged and to socialize.  Everyday conversations about everyday events, kids, house renovations, spiritual growth - all are welcome.  We post all of the details of Bonnie's physical health here so you can focus on the rest of your shared world with Bonnie.  Please help us shift the focus to social subjects.

We need to extend ourselves from our current present "set and setting" and engage in what is possible and move toward our loved future with friends and family.

Bonnie does read her email now.  She is at [email protected]

/Daniel for BanD

Black Eyed Peas

In the south (and elsewhere?) eating black-eyed peas on New Year’s Day brings good luck all year.  I don’t like black eyed peas.  Through my whole life I refused my mother’s urging to bring in the New Year with BEPs.  It was a running joke with the two of us.  I’d ordered pork for lunch on Jan 1, not noticing vegetables that came with it until I started eating.  And there they were.  I was suddenly reminded that this day was New Years.  I thought about how I’d probably never tasted them.  In honor of Mom, I tried some.  They were nicely cooked with a little Mexican style spice, but not hot. I liked them and ate them.  What else have I been missing all these years?  I need all the luck I can muster in 2009.  I feel fully armed with my New Years Peas.

 

Today, January 10, is the 99^th anniversary of my mother’s birth. I was 50 years old before I understood and appreciated my mother and the blessing she was in my life.  For many years, I didn’t know that not everyone had mother full of unconditional love.  I never had any doubt about how very much my mother loved me and that she would do anything for me whatever I did.  I feel sorry for people who don’t have that assurance; I cannot imagine what my life would have been without it.  Her favorite description of me was that “Bonnie Jean has her daddy’s brains and my guts.”  I was steeped in that story like fine tea brewed to perfection. It is the story that shaped me.  My mom is what we would call “upwardly mobile” today.  She came from a very poor, uneducated family, yet married a Rice University chemistry student who has often been described to me as “the most handsome man in Baytown.”  He was also one of the kindest and like Mom loved me without limit.  Daddy’s favorite light reading was the Encyclopedia Britannica.  I used to wonder how these two ever got together.  I’ve concluded that it was because Mom was just so sexy.  You would not think that from just looking at her.  She had tough kindness that made most people around her feel special.  In the years after Daddy died she collected four large diamond engagement rings, never re-marrying, but always keeping the rocks from men who were so happy to be able to give her something.  SOMETHING: that is what my mother was and continues to be for me.

 

Of all the great gifts and caring Daniel has given me over our twenty two year relationship, the greatest was the hospice tour he did with Mother in the last weeks of her life.   We flew to Jennifer’s wedding in early January of 1999 with a connection in Houston, hoping that she would be able to come with us.  It was not to be.  I got a call from my cousin Linda while in NC that Mom was in hospice and wanted to go home for the weeks left in her life.  We got off our return flight in Houston.  We brought her home, and few days later I left to back to work. For the weeks after that, I’d take the late SF flight to Houston on Friday evening and return the following Tuesday morning by nine.  Daniel was Mom’s principal hospice care person.  They build a strong bond over those weeks.  I was distressed, just barely able to stay awake while I was there.  Daniel was steadfast.  A decade before this, he had told me he wanted to get to know my mother before he would marry me; he figured that I would be like her when I was old, and he wanted to know that he could take care of me and would want to. How prophetic is that.

 

Mom would be so proud of the Obama election.  I wish she could have been here for so many things that have happened over the last decade.  How she would like loved those great grandchildren.  She would be proud that Jen gave Abi the middle name Jean.  She almost always called me Bonnie Jean.  But she was tired and ready to go to God.  She lived a long life, and like Frank Sinatra, she did it her way.  Whatever heaven is, I know she is there.

 

I’m back at Durham Regional Rehab.  All I have to do is rebuild some of the muscle strength I had on Oct 17, and restart some body functions.  It is amazingly hard. Iget very tired very fast. Today I was able to stand twice for twenty seconds with two people coaching and holding me.  It is a start.

 

Happy New Year!

Bonnie for BanD

Day 87 - Bonnie is making great strides - and wearing down emotionally.

Our dear Bonnie is making great strides in her rehabilitation and coping with an array of biological challenges that would sink most anyone I know.  

Bonnie is able to place a transfer board under herself and securely create a bridge to her potty chair.  She can scoot across from the bed to the potty chair and from the potty chair to her wheelchair and spin herself off to Physical Therapy.  She was able to stand up with assistance, and to stay standing without outside assistance for 20 seconds, twice on Saturday.  Her physical therapist was very impressed with her determination and progress.  We celebrated with Goodberry's Butter Pecan frozen custard. 

Thankfully, Amy Hymas' midwife's wisdom about using Peppermint oil to help Bonnie's bladder and urethra come back and work naturally, WORKED.  After three days of sniffing Peppermint oil, Bonnie became progressively more and more able to pass urine normally.  No more catheterizations.  This is a huge improvement and step forward, as you might imagine. 

Currently Bonnie is working to gain coordination and strength in her calves and thighs and feet.  Fortunately she does not experience pain in her feet when she puts weight on them.  This is truly a blessing. 

Bonnie is ready to move from Durham's Regional Rehabilitation Hospital to Wilmington's Coastal Rehabilitation Facility on Thursday.  This will put her with a few minutes of her daughter Jennifer and her NC grandchildren and within a 2.5 hour round trip for me from Oak Island.

Thursday I will drive up to Durham and pick her up in the Honda Odyssey.  Bonnie is looking forward to being in our car and driving along with me.  We have loved across the country in this car.  We get to enjoy the 4 drive back through the piney woods and farmland of NC.  This time I have to drop her off at the Coastal Rehabilitation Facility which is in a wing of the New Hanover Regional Hospital.   Bonnie has now set her in-patient graduation date for Feb 9th so she can be home for my birthday February 10th.  That would be great.

What do you think we should do for Bonnie's 65th Birthday on 20 January? 

As I sit here, I am reminded that we will all have our attention rightly turned to Obama's inauguration and that Bonnie loves stitching video together.  It would be lovely if people could create video bits telling Bonnie about memorable time you have shared. 

For those who are video challenged, I think I can arrange to record an iChat session for those of you who have Macs.  Here is an amazing free screen capture application for the Mac or the PC.   YOU can create a clever "screen cast" for Bonnie, using any photos you have.  Whatever you can see on your computer screen you can capture and annotate and send on to Bons.   I think I can arrange to use Skype for those on PC's.  Just some ideas.  

As great as Bonnie's progress has been, she is feeling lonely, and worn out. Bonnie has declared that for the time being, she is not up for fighting back from another near fatal trauma, such as a heart attack or stroke.  She has re-instated her Do Not Resuscitate orders.  While I loosely wish Bonnie was willing to undergo another round of CPR if she were to have a heart problem for instance, I deeply understand her weariness.  I also get her caution / wisdom to not risk becoming physically or mentally so challenged that life no longer has meaning.  Bonnie has been both prayerful and very zen in her approach to this decision. 

Bonnie is on a beta blocker to keep her heart rate down enough for her to exercise, and Coumadin to dissolve the blood clots in her thighs, in addition to 3 GRAMS of Cellcept and 40 mgs of Prednisone to cope with any lingering Chronic Graft vs. Host Disease.  We need to query her Bone Marrow Specialist about this to see if we can wean Bonnie off of these caustic, immune suppression drugs.  If you look at the "side effects" of these drugs and what they are doing to Bonnie, you can see why I would like to see Bonnie off of these things ASAHP. 

Bonnie also has a finger surgery / digit amputation coming up, and the fitting of her carbon fiber insoles, shin wrapping orthapedic and toe filling devices and re-learning how to walk with them.  Bonnie also has a dozen cavities and crowns she will need to have fixed due to the attach of the Chronic Graft vs. Host Disease on her mouth.  And this summer we hope to have Bonnie's left eye operated on, and to replace her lens and cornea so she can regain sight in that eye.

I am on Oak Island working to get the permits and stairlift and house ready for her to return.  I am recovering from 5 days of flu and fever and exhaustion.  I find myself drained and without reserves, especially when dealing with mis-coordinations in Bonnie's care.  

Fortunately, my fever broke and today I was able to focus on the tasks to hand.

I thank our minister Margaret Irwin for her loving interactions with Bonnie today. 

If you have a moment, do send Bonnie an e-mail telling her of your favorite projects, kids or house remodels etc.  Bonnie blooms in the face of sunny social conversation. 

with love,

/Daniel for BanD

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

Bonnie's view of the last three months

Three Months

Yesterday marked three months since THE INCIDENT.  Our current understanding is that I got a systemic infection that caused me to fall; there was no indication that I tried to break my fall which any who is conscious would try to do, for example.  Also my organ “decomposition” was more advanced than it would have been if it resulted from the fall.

I am back at a rehab at New Hanover hospital, where Jennifer works.  I see her most days, and had a wonderful visit with the grandchildren on Friday.  I am getting even better rehab here than in Durham; I didn’t think that would be possible.

I’m now able to stand up from a seated position if I’m sitting 30 inches off the ground.  Of course I need a handicapped walker, but I don’t usually need assistance.  My therapist expects I will be taking steps by Friday, because the hard part is standing up.

My address is Coastal Rehab Services, 2131 South 17th St., PO Box 9000, Wilmington, NC 28402.  The best ways to reach me are email, my cell phone (650-324-3816), and especially leaving a comment on posting on this blog.  I read the blog comments before email; I do respond to emails and usually don’t to comments.

Tomorrow I’m not answering the phone.  When I’m not in therapy, I’ll be totally absorbed in the inauguration.  I’ve told the therapists no work for me between 11:30 and 2.  We have a big screen TV in a common room here.  I’ll be watching with whoever chooses to watch from there.  It will be a good group of people, a real mix of ages, genders, race, and classes.  CNN has gone gaga over this inauguration, and so have I.

I get to watch a lot of CNN—up to 21 hours a day.  I have a little TV on a pole that I move around my bed. I don’t watch CNN all that time.  I watch the News Hour and MSNBC at night.  I listen to NPR until 9 am when the local PBS switches to music.  I downloaded a book on FDR’s first 100 days.  Did you know that other than the CCC, FDR had little interest in public infrastructure spending; that came some time after the first 100 days?  Congress authorized several billion for infrastructure spending, but Roosevelt said he  not imagine how they would spend as much as one billion.  We didn’t have a nation highway system, for example, that is always in need of repair.  I expect to be listening to the book several more times.  The economic issues were so complex even then.  I am glad we have a smart president, or will have tomorrow. 

I’ve also downloaded Doris Kearns Goodwin’s Team of Rivals.  The parallels of Lincoln and Obama are even more striking than I thought given what I’ve heard in the news media,  And I can see how much Obama is following Lincoln’s action.  John Seward was the senator from New York; he was the hands down favorite to get the new Republican party’s nomination for president.  But Lincoln was an astute politician according to Goodwin. 

My next listening will be how he secured the nomination at the convention in Chicago attended by 40,000 people.  He appointed Seward to be Secy of State and put the other two rivals for the nomination on the cabinet.  They thought Lincoln was a fool and intended to take over the govt while leaving Lincoln as a figurehead only.  But Lincoln quickly showed his leadership and they abandoned their plans and followed him loyally.  Seward became his best friend.  I’m eagerly looking forward to hearing how Lincoln won their respect and loyalty.  I know from the beginning of the book that part of it was his compassionate personal style, a characteristic Obama shares.

Please know that I am doing as well as I can.  I’m being well cared for by Daniel, Jennifer, and Scott.  The staff here is terrific to me.  I’m grateful to be alive and so grateful to you for praying for me.

Bonnie for BanD

Day 96 - Bonnie walks 20 feet using her walker !!

Bonnie is really with it and following every turn of the Obama inauguration and confirmation hearings etc.   She was full of joy after watching her President and his family making their way through the day. 

But the greatest news from the 20th of January, Bonnie's 65th birthday, she was able to walk 20 feet using her walker. 

Her physical therapists are blown away by the level of commitment and effort Bonnie shows every session, every day.  They say Bonnie is among the best rehabilitation patients with whom they have ever worked.  And each specialist and nurse who attends to Bonnie says they have never, ever seen someone who has so many complications and health challenges. 

Bonnie says proudly that she has learned to be a "professional patient". 

Bonnie has prove to be good at whatever she is focusing on.  Now Bonnie is focusing on returning to her roles as a happy, healthy human being, GrandBe, author and spiritual direction for folks at her churches in Southport NC, and Palo Alto CA.

After years of study at the Episcopal Divinity School and conversations with Father William Barry, author of 15 books, including The Practice of Spiritual Direction, God and You, Finding God in All Things, Spiritual Direction and the Encounter with God, Who Do You Say I Am? Bonnie has come to her own understanding of Spiritual Direction.  She says she "is not to Direct, but rather to sip tea and listen to each person moving to fathom their relationships with the Infinite.  And to listen for what they are called to do in their life." 

From my vantage point, Bonnie has not only survived, but she continues to thrive because she finds goodness and grace in daily events in everyday life.  She re-invents each new situation as an opportunity to learn, and learning now is for the sake of serving her friends and family and her President. 

Please contact our dear friend BK Hipsher by e-mail to share your stories of Bonnie and any photographs you have.

BK will arrange a convenient time to interview you by iChat or Skype so we can give Bonnie a video album that unfolds her life through the eyes of those who know and love her. 

BK is a busy professional, so this project will take some months to complete, but it is the only "thing" I can give to Bonnie for her 65th birthday that she does not already have. 

Do think of your favorite Bonnie stories. 

BK Hipsher can be reached by e-mail at [email protected]. 

/Daniel for BanD

Update: Today Bonnie walked all the way across a big gym on her walker.  Unbelieveable. 

Here is a link to a quick photo album I gave to Bonnie as a placeholder for the gift you, her friends, are about to give to her in the form of a video album, with BK's kind assistance.

http://stillthinking.typepad.com/photos/bonnie_beloved_church_and/church-interior.html

Day 97 - Bonnie walks 80 feet without rest. Then 30 feet.

It is a race to get the house ready in time for Bonnie to come home.   Bonnie continues to work out in the gym and to blow people's minds.  Today Bonnie walked 80 feet without having to rest.  Later today she was able to walk 30 steps.  Our entire beach house is 40' x 38'. 

Meanwhile, back at the ranch, Ron Drake our contractor ripped the front deck down to the joists.  He raised the deck surface 4.5" so it is flush with the front door threshold.  This will allow Bonnie to glide smoothly in and out of the house without a step or trip hazard. 

Before quitting for the day, Ron and our master carpenter Nate Dove created a new pair of 15' stair stringers,  and installed a new 5' wide flight of stairs.  This will allow ample room for the new StairLift scheduled to arrive on Tuesday.  

Bonnie is scheduled to come home on Thursday, and her son is flying in from LA to visit.   It will have been 104 days since Bonnie was last home. 

Monday and Tuesday a friend and I aim to unpack the remaining boxes from the first moving pod and to do a thorough spring cleaning.

Hurray,  Bonnie is coming home.

/Daniel for BanD

Day 101 - Bonnie is scheduled to come home on Thursday. Two days til B Day.

Bonnie is hard to reach during the day because she is spending more and more time in the gym. 

Bonnie was able to do 750 steps on the step machine, or the height of the Washington Monument, TWICE, on Saturday.

On Sunday there was no Physical Therapy scheduled but Bonnie got a PT specialist to take her to the gym to work out anyway. 

Bonnie's upper body strength is getting so good that I considered canceling the stair-lift and just throwing a thick manila rope over the banister for her to climb, hand-over-hand.   Heck, the house is only 12 feet above the sand.

But the new front deck and 5' wide stairs are done.  Tomorrow the new stair-lift circuit goes in, and we have our building department inspections.

The stair-lift was delayed coming through customs in Canada yesterday, so now it is scheduled to get installed on Thursday morning.

I bring Bonnie home Thursday circa noon for her first ride up the stairs. 

If the lift is not done, we will haul her, in her wheelchair, up the stairs backwards.  She is eager to be back in her own home.  Even a vacation of 14 weeks would be a long time away from home.   14 weeks in 5 different hospitals will make this homecoming special.  

For the last two days, I have been deep-cleaning our house with Jim and Ruth, our NC friends.  They are helping me unpack boxes and complete the move-in we were amidst when Bonnie cracked her head in October. 

Tomorrow we steam clean the kitchen, and refrigerator, and re-organize the pantry and re-polish the Brazilian cherry floors. 

Bonnie's office / the guest bedroom and the grandkids bedroom still have boxes for Bonnie to go through and determine where things are to be placed.

The master bedroom has Bonnie's 37" LCD HDTV mounted.   The living room and dining room and kitchen and both bathrooms are ready to welcome Bonnie and our guests. 

Bonnie's wheelchair, and her new cosmic walker, shower chair / transfer bench and potty chair are being delivered tomorrow morning. 

Tomorrow afternoon, I go to the Coastal Rehabilitation for Bonnie and I to practice getting in and out of the Honda Odyssey.  Then we will meet with the doctors and get briefed on Bonnie's care and on-going physical and occupational therapy regimen.  Starting Friday we will have visits from physical and occupational therapists on alternate days and a home health care nurse every other day. 

Bonnie, in her inimitable way, sent me a revised one page, single-spaced shopping list for the Bouillabaisse dinner she is going to prepare for her son on Thursday and the beef and asparagus dinner she is preparing for her daughter, son-in-law and our NC grandchildren on Friday.  

This is not bad progress for a woman who was unconscious and under "Do Not Resuscitate" protocols 98 days ago.  45 days ago Bonnie could not swing her legs over the side of a bed.  Now she can walk 80 steps with her walker. 

I look forward to helping Bonnie cook for back-to-back dinner parties. 

Living with Bonnie is a non-stop adventure.

/Daniel for BanD

Day 103 - It is B Day !! In 5.5 hours I go and pick Bonnie and bring her HOME!!

Yesterday was Wednesday.  The last day of preparations before B-Day. 

It was a "point 5" day = .5

As in "we are so close, but not yet whole"

Yesterday I awakened after 3.5 hours of sleep to receive the Building Inspector.  Steve came just as I was grinding the espresso beans.  Okay no espresso at 8:45.  Steve passes our new stairs and deck but requests that we raise the hand rail from 32.5" to 35.5".   What we call a "hand rail", he declares to be a "guard rail" - thus a different code - calling for a different height.  Close, but not quite.  No problem.  The carpenter will fix it Friday. 

Yesterday, the Stair-Lift was in Cleveland, but the snow storms mean that it will not make it to Oak Island in time to install for Bonnie's homecoming.  Close, but not quite. No problem, we will install the Stair-lift when it comes. 

By phone Bonnie says she is not concerned about the delays on the Stair-lift.   She suggests that I can stand behind her as she walk ups the 15 steps.  She declares that she can make it all the way to the top, if I just give her butt a little push.  NOTHING is going to keep her from being home to see her son, Ron tonight, and Jennifer, Scott and the NC grandkids Friday night. 

On Tuesday, Jim and Ruth came and we fixed and cleaned up most of the remaining items.  On Wednesday they could only stay until 12:30 PM.  So we raced to try and finish every thing.  I still was not able finish preparing a double shot of espresso.  By noon we had almost finished all cleaning and fixing, but not quite.  No problem, they are coming back this morning and will complete the punch list to make the house ready for Bonnie's homecoming.

I am back to finish steaming the milk, but before I can pull two shots of espresso, Bonnie's wheelchair and walker was delivered.  No problem.  At noon, I was finally able to make two shots of espresso and a bowl of oatmeal.  Then I drove over to Coastal Rehabilitation with Bonnie's wheelchair and walker to get them perfectly adjusted to Bonnie. 

I arrive to Coastal Rehab .5 of an hour late.  I am there to observe and/or help Bonnie practice all of her new tricks.  She stands up by doing the "nose over toes" trick she learned last year during her 9 weeks at Youville Rehabilitation Hospital.  Then Bonnie easily sits back down using her walker as parallel bars.  She does all of this easily, with quiet pride.  Wow.  I am impressed.  Then Bonnie pulls back the sleeve of her shirt, and displays her biceps, in a mock linebacker pose.  Hey Bonnie has developed a real bicep bump.

She walks over to the practice stair case, using her walker.  Bonnie is able to mount and walk up one stair!  Wow.  Amazing.  But not enough to cope with the lack of a Stair-lift for her Thursday homecoming.  No pushing her butt up 15 stairs. 

No problem.  Jeff, her Physical Therapist says we can strap Bonnie into her wheel chair with her seat belt, and bump her up the stairs backwards.   We use the gym's practice staircase to learn how to do this safely.  We tip Bonnie back, and pull her up, bump, bump, bump, up one stair at a time.  Like they say in Jamaica mon, No problem.

We practice having Bonnie get out of her wheelchair, and grabbing her walker and walking up to the passenger seat of the Honda Odyssey.  She is able to turn around and position herself to get in passenger seat, easily.  She smiles.  We have visions of Road Trips!  Bonnie is able to get out of the car using the grab bar above the door frame and using her walker as parallel bars. 

I think this is THE trick she had to show that she could do to be cleared to come home on Thursday.

We retire to Bonnie's room and enjoy each others company.  Finally at 6 PM I go over her third draft of a 1.5 page grocery list.  No problem I go to Costco.  It takes 1.5 hours to renew our membership and walk up and down the each row, like a treasure hunt, to get each item on Bonnie's list.  It was only 4.5 hundred dollars to get most of the things on her list. 

But I have .5 of a page of items I can not buy at Costco, like fresh bay leaves, fresh Italian Parsley, Pelagrino, Tofu etc.  It is 8.5 PM.  No Problem.  I drive across the bridge to a new upscale supermarket. 

It is joke trying to find Tofu in North Carolina, even in a yuppie supermarket that features Organic produce and fresh wild scallops from Maine.  As I go around the refrigerated perimeter of the supermarket, looking for firm Tofu, I notice that I can get Pork Loin Ribs, Baby Back Ribs, 9 kinds of Ham, 15 kinds of bacon, many local and national brands of Pork Sausage and Patties, Pork Shoulder (blade in, nor bladeless) and Pigs Feet (pickled or fresh). 

When I ask for Tofu, I go where I am directed.  I find Garden Burgers.  That is the state of Tofu and Hogs in Eastern North Carolina. 

I drive home in a total of 1.5 hours.  I haul 11 loads of groceries up the stairs and to put them away.  It takes about 1.5 hours to get everything into our huge side-by-side refrigerator.  

It is now 6.5 AM on Thursday morning.  I have to get awaken in 2.5 hours to let Jim and Ruth in.  I have to pick Bonnie up at about noon, an hour away.

This morning Jim and Ruth will spend .5 of a day to re-wash the tile floor in the kitchen.  Do a final application of Bruce wood wax to the plank floors, tables and chairs.  Pack all of the "jelly-jar style glasses" into strong box, to await this summers rental season and put the new Lenox water and juice glasses into cabinet.  Ruth will do a final Clorox cleaning of the counters and stove and tile floor.  Jim will finally will put the huge box from Pioneer HDTV that I have been bumping into for 120 days, into storage room under the house.  What a joy to have our most of our house livable again.  We started this "move-in" process the last week of August.  5 months is too long to live amid boxes. 

Jim will power wash the windows and the siding of the house.  

I will unpack the back of the Honda and take two huge, empty suitcases to the Hospital to pack up all of Bonnie's electronics, clothes, books and medicines.  Is this a lot of work?  No problem.  Especially compared to the level of effort and Bonnie's commitment to be ready to come home two weeks earlier than recently planned. 

Now, why did Bonnie re-double her effort to come home today.  Bonnie's son, Ron, had a pre-arranged flight to come to see her, and Bonnie wanted to be a host for him, AT HOME. 

Bonnie is coming home with THREE 1 Gallon Ziplock Bags to hold all of the medications she is either currently on, or has recently been taking.   Is this a lot of worry?  No Problem.  Bonnie is likely to be coming off of many of these drugs over the next two weeks and off of even more in the next two months

It is B-Day.  Bonnie is coming home.

/Daniel for BanD.

Bonnie is home, and preparing the Bouillabaisse for dinner.

Bonnie is home.  The Stair-lift gets installed tomorrow at 11AM.  No problem.

Jim and I bumped Bonnie up the stairs with her belted in her wheelchair, tilted back and riding up backward.  

Bonnie was touched to be home and to see the amazing loving work Jim and Ruth did over the past four days to make the house glow with clean warmth.  She said it feels unreal to be home. 

But there is dinner for her son to prepare.  So Bonnie wheeled herself to the breakfast bar, and sat at the kitchen counter chopping onions and peppers for the Bouillabaisse.  We just bought 1lb. of wild sea scallops from Maine, 1lb. of clams from Maine, 1lb of pre-cooked shrimp with the tails on, from the Gulf, 2lbs of Atlantic Cod and 4 lobster claws from Maine. 

We shall see how good Bonnie's cooking is tonight.  Oh, Bonnie correctly recalled that we had exactly 4 cans of diced tomatoes on the bottom shelf of the pantry.  Pretty good for a person who cracked her skull on Oct 18th.

Bonnie just wheeled herself into the bedroom and I have my honey here in bed with me. 

Let's see I can continue writing in the Weblog or I can .....

Bye.

/Daniel for BanD

Day 106 - Bonnie loved her visit with her kids and Grandkids Thurs - Sat

Bonnie is adjusting to home life quite well.  She wheeled herself around the house for about hour, stopping here and there, getting used to being at home. After 105 days in 14 different units in 5 different hospitals, just being out institutions and riding in a car, much less being in her own home, was a novel experience.  Bonnie says she had almost forgotten her life before her life as a patient. 

Bonnie was thrilled to see her son Ron and his dear friend Hadley arrive.  Bonnie was chopping vegetables at a clever Levenger solid-cherry laptop table that rolls goes over the arms of her wheelchair. 

Within half an hour of Ron and Hadley's arrival, the sun was setting over the ocean, a rosy orange streaked with wispy white and dark clouds.   True to form, Bonnie declared it to be "a champagne emergency".  Ron popped the cork on Bonnie's favorite Domaine Chandon Blanc de Noir and we toasted the sunset and each other.  I love this champagne because it's is so close to Bonnie's skin in color.  

Hadley is a chef and has wonderful taste in wine, food and kitchen equipment.  I had fun showing her a few pieces of our beloved Rosle kitchen utensils.  She had particular fun opening the cans of diced tomatoes using the Rosle can opener.  The cutting wheel of this opener runs smoothly along the can rim with-out contact to the contents.  Cutting along the side permits easy lifting of the top for re-use as a lid.  The cut tin edge is blunt and smooth.  Ah, German engineering. 

Bonnie was pedaling her wheelchair smoothly around the kitchen, putting the broth and spices into the two 6 quart pots.   When the broth was simmering hot, we added the shellfish and then the fish so it would all remain tender.   We used our All Clad Stock pot / steamer to boil the water for the round cheese and spinich ravioli AND placed a steamer on top to steam the snow peas and asparagus.  Hadley made the salad dressing and salad of mixed baby greens in our huge Arbutus wooden bowl.  She added small on-the-vine tomatoes and Parmigiano-Reggiano cheese.  The salad was so colorful. 

We had two wonderful white wines, one a La Crema Chardonnay.  I call Bonnie "La Crema" every morning when I bring her a cappuccino.  But the white wine Hadley and Ron brought was the best.  Round, smoky, and full of different flavors.  Dinner was tasty, fun and funny.  Some of us ate the asparagus as a seal eats a fish.

Bonnie's Bouillabaisse was the hit of the dinner.  It was truly wonderful. 

Finally at about 10 PM Bonnie and I retired and Hadley and Ron finished cleaning up the kitchen.

We love them:  Really fun people to be around.  I will ask Bonnie to write about the following afternoon and dinner with her NC grandchildren and children, Ron and Jennifer, and her husband Scott. 

Now I have my Bonnie in my bed.  There are no words to fully capture the sweep of emotions and sensations.  

I can only say that as we lie in bed, with her head on my shoulder and her leg thrown across mine;  with my hand in her hair, we find the sensations both strange and familiar by turns.  It is secure and warm, we sink into the comfort of each others bodies.  And there are flashes of fear. 

Bonnie has prayed and discerned that it was time to put her Do Not Resuscitate orders back in place.  She explains that she is fully onboard to go for recovery one more time, but that she does not have it in her to be brought back from the process of dying another time.  So we are going for a full life, but there is no more safety net of resuscitation in place.   It reminds me of the sense of being up against life and reality while "free climbing" in Yosemite, without a rope when I was young. 

It is interesting to experience how much this calls us to enjoy life hour by hour.  We are loving each others company.  Bonnie is asleep by my side. 

Good night sweet friends.  Thank you for your prayers and kind thoughts and words.  We have been uplifted, once again. 

/Daniel for BanD