Bonnie Recovery

Day 44 - Bonnie confronts her feet and toes and speaks of death as a friend.

A week ago Bonnie asked me to read her our weblog.  The parts I was most interested in having her read were your responses.  She read these with interest, but she wanted me to hear me read her the weblog from Day 1 of her fall.  She can not read very long without her Scleral Lens.  Bonnie does not remember her fall or the first four weeks of her hospitalization.  

It took us all afternoon for me to read the weblog to Bonnie.  It was an interesting experience for both of us to re-live the events of the last 40 days.  When I had read the last entry in the weblog, it was as if a fog had lifted.  We were both in present time.  We were quiet and peaceful.  It was clear that we had survived, again.  And again we had a long road ahead before Bonnie would be able to walk and be fully functional. 

Then Bonnie's nurse came in and re-wrapped her toes and feet.  She told Bonnie that she would lose not only her toes but some portion of her forefeet.  I could feel both of us ridging against this reality.  We went back to our conversation.  A few hours later I kissed her good night and drove home.  I use the two hour trip each way to listen to music I want to explore closely.  Miles Davis, John Coltrane and Mose Allison have been kept my interest. 

When I got home I did some research on the internet and discovered that people who have their toes and portions of their forefeet amputated routinely learn to walk again.  But I came to realize that we would need to get to a first rate orthopedic surgeon and rehabilitation facility.   I researched orthopedic surgeons specializing in toes and feet in North Carolina.  I discovered that Duke University Medical Center has one the top 10 orthopedic surgerical departments in the country.  I printed up about 30 pages of info on amputation of toes and forefeet and drove back to hang out with Bonnie the following morning.  

Bonnie was a bit depressed on Sunday.  She was living with the idea that she would lose some portion of her feet.  She listened to the results of my research and was happy to hear that people routinely relearn to walk without their toes and forefeet.  We agreed to work on getting her to Duke ASAP.  Here are the photos we are providing to the head of orthopedic surgery at Duke to see if they will accept Bonnie as a patient.  The photos are not for the faint of heart. 

Bonnie asked me to tell our friends and family that gather here what she experienced during the days that she was in critical condition and not much conscious of the everyday world and not able to communicate.  She dictated the following.  

“I did not have a death or near death experience.  I never really died or came close to it.  I was not drawn or immersed in a white light.  I was pretty calm.  I did not want to die, but I was not afraid of dying. 

Death is more like an old friend now.  I am not afraid of death any more. 

The result (of my fall) is that death is closer, sort of like a friend.  It is not that I have been afraid of death, but it was foreign, and now it is not foreign.  I am happy to be alive and I have the sense that I have a lot of work ahead of me (to recover).  

I feel closer to God, certainly. 

Advent begins today.  This is my favorite time.  Of all of the Christian seasons this is my favorite time.  Because Advent is the promise of new life and life with God.  It is the anticipation of God becoming human. 

I am dedicating my advent to having God being born anew in me.  Whatever that means.  Whatever God chooses to have that be. 

And tell people that I am of pretty good spirit.  I am not much in pain. 

Though I am a little sad that the Patriots lost ;-) " (the football game tonight). 

 And Bonnie says to say "Thank you to everybody."

/Daniel for BanD

Day 48 - Unfucking believeable - Incompetence on top of Incompetence.

I was visiting Bonnie at Pender Hospital and Bonnie's respiratory specialist MD came by in her white coat.  She listened to Bonnie's lungs and tested her Oxygen Saturation level.  The doctor moved to leave, satisfied that Bonnie had congestion in her lungs and that Bonnie had an oxygen saturation level of 93. 

I asked her what we were going to do about the congestion in Bonnie's lungs which had gotten progressively worse since Bonnie had been transferred to Pender Hospital over a week ago.  The doctor was unresponsive.   So, I asked why Bonnie had been put on oxygen for her first 4 days at Pender, when she had been OFF of all oxygen for her last 14 days at NHRMC, given that Dr. Hughes had said continued use of oxygen could predispose Bonnie to Pneumonia.  The doctor said she had not read the record from NHRMC and that she was not aware that Bonnie had been off of oxygen for 2 weeks.

I asked the Doctor to see a copy of the most recent blood tests to see if Bonnie was testing positive for pneumonia.  The doctor promised to come back to tell us the results.  Not only doctor did NOT return that night, she has not seen Bonnie for the following 2 days. 

But before she left she said that Bonnie was not having daily blood tests as this was not an "Acute Care Facility", Bonnie was only being tested weekly.  I suggested that Complete Blood Tests and Blood Chemistry tests were a good idea as Bonnie was on Prednisone and was a Bone Marrow Transplant patient with a compromised immune system.

I asked why the Doctor she was satisfied with a 93 percent blood saturation.  She replied that "93 is a good number.  What do you think your blood saturation level is?"  I replied that what my blood saturation levels were probably beside the point, but to the point:  Bonnie had been recorded, around the clock, with blood saturation levels of 98-100 for the last two weeks at NHRMC.  And per the medical record Bonnie had her chest congestion clearing up a week ago.  Now Bonnie was experiencing increasing chest congestion and blood sat levels that had dropped to 93.  The doctor responded that she did not know any of this because she had not read Bonnie's patient record. 

This pulmonary specialist also did not know that Bonnie was immune compromised or that a simple case of pneumonia could easily kill Bonnie.  Nor had she noticed that Bonnie was on Mepron daily to reduce Bonnie's chances of getting a particular form of pneumonia common to BMT patients whose immune systems are being suppressed by Predisione. 

Upon further discussion the doctor revealed that she did not know that Bonnie has had a Bone Marrow Transplant.  This doctor has only had 8 days to have familiarized herself with her patient's medical history.   Pender  Hospital is at about 1/3 capacity.  Most of it's beds are empty.  At Pender we encountered yet another example of Bonnie's concise Continuity of Care documents going dangerously unread, along with the records from the hospital that entrusted Bonnie to their care.  

The following day my questioning of Bonnie's pulmonary MD, Bonnie had her first blood test in over a week and a chest x-ray.  Bonnie is now receiving therapy for her congestion 3 times a day and her chest is beginning to clear up.  What would have happened if I had not noticed that 93 is not a good number for Bonnie? 

Patient advocates, take notice.  Be familiar with your patient's numbers and health trends and each of their symptoms and be vocal.  Do not be antagonistic, but you had better be vocal.  Do not take a "reason" in place of an effective answer.  The only metric to believe is improvement.  Keep after it until your loved one is improving, or be willing to go home alone. 

We are encountering the same level of foolishness in getting Bonnie transferred to Duke for orthopedic surgery and rehabilitation.  I will flesh out the pure Catch-22, Mickey-Mouse that is going on when I get back tonight.  I have to drive 2 hours to straighten this out now.  

Suffice it to say for now, that her other doctor, the surgeon, at Pender ALSO had NOT read Bonnie's patient record from NHRMC or the Continuity of Care documents from Dana Farber Cancer Institute.   This surgeon, Bonnie's primary doctor at Pender Hospital did not know that she has had a Bone Marrow Transplant or that she is immune compromised.  Can you imagine a surgeon ready to chop off Bonnie's toes not knowing her medical history or immune suppression issues. 

This doctor claims he had been "trying" and but he had not succeeded in getting Bonnie an "outpatient" visit to Duke.   Meaning that he was trying to arrange that she would travel 2.5 hours by ambulance to see an orthopedic surgeon at Duke as an outpatient and then return to 2.5 hours by ambulance Pender Hospital for her surgery and months of rehabilitation.  Huh?   This only make sense if one is trying to get Medicare to pay for a patient's care by a hospital clearly not in condition to provide the level of care required. 

I repeat her primary doctor at Pender had also not read Bonnie's medical record for 8 days, and he "could not" effect a transfer to Duke when I had it all pre-arranged.

I am driving up there now to see if I can help the good doctor effect this transfer.  You can not make this stuff up. 

Okay, I am back.  The doctor at Pender still had not been able to effect a transfer to Duke.  Upon my arrival,  I placed one conference call between  Duke transfer service and the doctor.  Three hours later Bonnie was in an ambulance and on her way to Duke.   She will stay in the Bone Marrow Transplant wing of the hospital until there is a bed for her in the Orthopedic Surgery area.  

I am back home and watching a History Channel show on Jesus.  What do you think Jesus would make of both of our Doctors' "caregiving" at Pender Hospital? 

Bonnie just called to say that when she got into the ambulance they discovered that she had a 101 degree fever.  Pender had not been watching her temperature regularly despite my warnings of increased chest congestion and an compromised immune system.  Unfucking believeable.  Bonnie is at Duke on the Bone Marrow Transplant floor now.  Thank God. 

/Daniel for BanD

Day 50 - Bonnie in Duke's Bone Marrow Transplant Unit

Bonnie is in Duke's Bone Marrow Transplant Unit.  They have her on Vancomycin, (an antibiotic reserved as a drug of "last resort") to damp down her fever.  She has a lung infection and a newly discovered bladder infection.

They awakened her at 2:30 AM to re-install her peripherally inserted central catheter (PICC or PIC line) .  NHRMC removed Bonnie's PIC line when Bonnie was preparing to leave, over my protest.  They said that she had to have this PIC line removed.  Not for medical reasons, but to limit NHRMC's liability.  I pointed out that it often took a specialist over an hour to place a PIC line in Bonnie's beleagured veins now and she would need blood draws for months to come. 

Bonnie's case manager at NHRMC said that if Pender needed to take blood regularly or administer meds intravenously they would install a "Central Line".  Of course it is absurd that a regional hospital would install a central line for regular blood draws, but we had little choice.  I was too worn out to protest further as I should have. 

Duke could not successfully place a PIC line for an hour or so, keeping Bonnie awake.  Today they had to try again and again.  Poor Bonnie.  This adds insult to injury.  Bonnie had a perfectly installed PIC line.  Had Pender used that PIC line for regular blood tests they would not have been so slow to find her lung infection.  Of course if Pender had been taking her temperature they would have discovered it sooner as well. 

Bonnie had scans of her toes and feet with dye to show how much circulation she has.  This will help determine how much of toes and/or feet they will have to amputate.  The nurses and a BMT specialist have been catching up on Bonnie's history and believe her Graft vs. Host Disease may have had something to do with her fall.  It appears that Bonnie will stay on the Bone Marrow Transplant floor for much of her stay at Duke as they are concerned that her underlying disease may need to be watched to secure her recovery. 

They wanted to revisit her advanced directives and asked if she still wanted to live after all she has been through.  It seems way late to be asking Bonnie if she wants to live.  It would seem her survival thus far would be the clearest statement possible.  I guess it was on someone's checklist. 

On the plus side, they are reading Bonnie's patient record carefully and getting all of her allergies.  Hurray.  Bonnie is getting great care.  What a relief.

I am so glad that Bonnie is now at Duke.  I continue to be baffled by the failure of Bonnie's Case Manager at NHRMC to get Bonnie transferred to Duke two weeks ago.  Bonnie was already a patient at Duke, with the Head of Duke's Bone Marrow Clinic as her doctor and with a Duke Medical Center patient number.  We gave Bonnie's case manager her Doctors contact information etc.   But the case manager took the first decline from the rehabilitation facility as a final answer from all of Duke. 

It took me one e-mail and two telephone calls to get Bonnie transferred to Duke, with no official position. 

The case manager's lack of determination to get Bonnie to Duke could have cost Bonnie her life.  Unless one is of the opinion that TWO new, unnoticed infections in Bonnie's Lungs and Bladder and an undetected fever of 101 are not severe risks to an immune-compromised patient.  When I have the time for correction of medical institutions and personnel, we will carefully revisit what happened in the transfer from NHRMC and at Pender Hospital.

I only hope my failure to get Bonnie transferred directly to Duke does not turn out to cost her further pain and suffering. 

Your continued prayers and kind thoughts are most gratefully received.

/Daniel for BanD

 

Day 52 - Bonnie's fever is down. Infections coming under control.

Dear Betsy, and friends

Thank you for your concerns and thoughts.

We are revisiting Bonnie's advanced directives.  But who doubts that Bonnie will remain the Bonnie we know. "Damn the torpedos, full speed ahead. I have a life to live and work to do."

Fortunately, at Duke where they publish the encyclopedia of Orthopedic Surgery, Bonnie is told that surgeries she will require are relatively straightforward.

Many orthopedic specialists visit with Bonnie everyday. They are doing the scans and tests to research just which surgeries her hands and feet will need and when. In the meantime the Bone Marrow Transplant team is working to get Bonnie's infections under control and her blood results understood.

I am about to drive up to Duke, after registering the car.  While attending to Bonnie, our car registration expired.  I had the re-inspection done, and went to get the sticker and new registration on Friday afternoon, only to discover that some NC state vehicle taxes were unpaid?  I had to wait until the State office opened on Monday to settle up.   I drove one hour to a rural town that is the Count Seat for Brunswick County NC.  Bolivia NC  (population 148, really).  I paid our back vehicle taxes.  We owed exactly $5 and 41 cents.   Then I drove 40 minutes to a different office in strip mall, behind the Golden Corral Restaurant, to get the proper sticker, with ten minutes to spare.

Without the proper license plate sticker I could be arrested by Barney Fife and do time in Mayberry.  No really, in North Carolina, without a current reflective sticker on your license plate the police will stop you, have your car towed and take you to jail.  It is good for the local economy. 

But who would bail me out?

It is a good thing that I rendered unto Caesar, so I can now drive to Durham NC.

/D for BanD

Day 54 - Bonnie chest congestion is clearing and she is EATING real food.

Can you imagine not having the taste of food for 52 days?  Today Bonnie had turkey and gravy and stuffing and mashed potatoes.   Nothing imaginary about it.  She loved it. 

She is working with the Physical Therapist to sit up in bed and swing her legs over the side of the bed.  She is able to use a bed pan.  Her diaper rash is slowly subsiding.  The hole in her neck from the Trachea Tube has healed over and her voice is coming back.  Bonnie has to relearn to breathe so she can speak in full sentences.

Her lung capacity is coming back as she uses a special plastic device to clear her lungs and build up her lung capacity.  We are working with the Bone Marrow Transplant specialists to see what is going on with her blood.  She had to have a unit of red blood as she continues to run low red blood counts, and high white blood counts.  I do not like the mystery, but so far no one seems too alarmed.  On the other hand I have still not seen her Bone Marrow Transplant doctors. 

The surgeons have not yet told us what they are going to do or when.  But we expect Bonnie will lose all of her toes and a digit of her middle finger on her left hand.   She should be able to walk just fine after the surgery heals and she re-learns to stand, balance and walk without toes.  I speculate that this will require some new skills and training of her brain. 

Today, Bonnie's nurse looked at me and asked if I was sick.  She noticed that I have red all the way edges of my eyes and commented that I look sick.  I tried to wave it off.  She persisted.  I think I am just stressed out and tired, though I sleep alot.  Bonnie says this is how I look when I am really stressed and stretched.  I guess 50 days and making / allowing so many dangerous mistakes is taking it's toll.  

Anyway, I am staying at a hotel on the 7th floor across the street from the Duke Hospital.  Bonnie is on the top floor where they fly in the helicopters with trauma patients.  She is in a long term care, compromised host unit that has 4 doors that do the airlock trick to keep the floor relatively germ free.  One has to wash one's hands for 15 seconds in front of a guard / guide just to be allowed to open the last door.  Dr. Chao is very serious about not killing his patients when simple hand washing will reduce such needless deaths.  His new Bone Marrow Transplant Clinic at a different location has a modern sculpture of sinks in the entrance.  Everyone has to wash up just to enter the clinic.  Such simple wisdom.

I think Bonnie is in good hands, though we have many questions and issues up on her white board that the doctors and nurses are in the process of answering or addressing one, by one.  This is the first hospital we have seen that makes space for patients and advocates to coordinate the health issues with the doctors.  Amazing what a 11" x 5" section of whiteboard can do for all stakeholders.  It is as simple as soap and water.  How long do you think before other hospitals adopt such wisdom?  It is a cultural shift, not just a whiteboards or sinks.

I am exhausted and have been in a week, or longer depression.   I will be fine when I get some rest and we have a plan for Bonnie and I see her infections and her blood tests coming back into normal ranges.  I live in fear of infections, and Graft vs. Host Disease's hydra-headed manifestations and the possibility of a return of her Leukemia.  In the discharge notes from NHRMC they noted that Bonnie had AML.  I am sure this was a medical error in notation, but I hate it when Bonnie's blood tests are wacky for weeks on end. 

Oh, to my dear friend, Angelo.  Yes, North Carolina truly borders Tennessee, Jed. 

In fact to make it to Duke a couple of nights ago, I paid Jesse twenty bucks to pull a roofer's nail out of my left front tire and plug the tire by the light of headlights reflecting on the Yaupon garage door.  Tennessee and NC are not so bad, just foreign.  Sometimes the dark is from our eyes. 

And yes we all die, some day.  Brenda says this is what makes life so special.  The question is how do we live?  And who are we, in the lives of our friends and families and the communities that matter to us. 

/D for BanD

Day 56 - Bonnie out of bed 2 hours a day and used her laptop today.

Bonnie gets help from her Physical Therapist to get into a chair and she sits up a couple of hours a day.  She does her exercises and today she picked up her laptop.  I speculate that she will post here shortly.

We still do not have a date for her surgeries or a clear picture of where she will do her rehabilitation, but it seems like we will be at Duke for a while more. 

I am feeling a bit better, having slept much of the day.  I enjoyed my visit with Bonnie tonight.  I went and got some groceries so I will have Peet's Coffee and bananas and oatmeal for breakfast.   I hope to be there for rounds tomorrow so I can understand where we are with Bonnie's blood tests, lung infection, and surgery schedule and rehabilitation plans. 

What I want for Christmas is a bit of visibility into the future.

/Daniel  for BanD

stayin' alive

friends,

 I have so much I want to tell you, but I can only type  with one finger and so this will be brief.

 

I’ve been in bed almost 2 months and now will lose my toes. I have a long way to walk again.  most days I’m ok with this. some days I’m depressed, but as many days I’m nergetic and happy.  I’m always grateful.

 

I think a lot about the happy times we had in our summer travels.  it was wonderful to see so many of you.

 

I’m in a good place physically and spiritually.

 

Love, bonnie for band

Day 57 - Beyond Statistical Probability... again

Hi this is Bonnie speaking.  Daniel is taking dictation here (and fleshing out my thoughts.)

I have been thinking about The Fall.  It was so unlikely to happen.  Dr. Chao said that he never thought he would see me in this condition, and certainly not due to a fall.  They have examined the medical record and there is no evidence that it had anything to do with my Graft vs. Host Disease.    

So all I am left with is this: I slipped and fell.  Hmmmmmph.  Given that this was so unlikely, I wonder and wonder "why me?", "why now?"  Not in the sense why did God do this to me... but what does this "mean"? 

It brings to mind the time when fire consumed the truck carrying 5 of our Door to Door containers, with everything we owned, as we moved to Divinity School.  There we got a "pop quiz" from God (or from Reality, as Daniel prefers to parse the Infinite) and the pop quiz was "How attached are you to all of your stuff?"  That one was easy.  Not very attached.  We were truly fine with losing everything.  I guess that was because we had so nearly lost my life... and because we got to start over again. 

But I am trying to figure out "What am I to learn from this event?"  It is not that I expect to find The Answer, but I am looking for meaning in the puzzle of it.  How do I make this horrible thing, into a good thing? 

Today was a Really Good Day.  Yesterday, not so much.  I was just tired and Daniel did not come until evening time.  The UPs of today began when transplant doctor went out of his way to stop and tell me that he was amazed that I survived my fall and it's many complications.  He said that almost everyone would have died of the multiple, multiple organ failures I suffered.  He said that even he and his young colleague would have died.  He looked at me with some awe that I had survived when so few could. 

He was just truly amazed at my recovery.  He pointed out that my liver failed and now my liver function is perfect; my kidneys failed and now my kidney function is perfect, my heart failed and required 3 days of pressor drugs and now my heart function is nearly perfect.  He told me he just does not see that happen.

This reminds me the reactions of my Nephrologist, Cardiac Specialist, Oncologists, and Hematologists at Standford University Hospital in 2002 when I recovered from total renal failure, congestive heart failure and Myelodysplasia Syndrome which rapidly progressed to a highly Chemo Resistant case of Acute Myelogenous Leukemia.  

I recovered full kidney function, full heart function and went into an apparently "spontaneous remission" from Leukemia for 34 months; all very beyond statistical probability.  As a person who once fancied herself as knowing something about statistics, I am left to wonder about probabilities and cause in my life. 

I thought of all of the people who held me in their prayers.  I will say more about this in another moment.  But this is the heart of this message. 

I had a good Physical Therapy session.  I sat up in bed and helped swing my legs over the side and help move to the chair where I sat up for some exercises and read for 2.5 hours.  My physical therapist says he will recommend me to an Acute Rehabilitation Facility, where I will have to do 3 hours a day of Physical Therapy, because I show extremely high levels of motivation and determination.  He says such levels are rare. 

Daniel, on the other hand, asks how much I worked my legs, and is pressing me to work on my quadriceps, which I will need to help assist in transfers from bed to chair and from potty chair back to bed.  Daniel is the toughest coach I have, but then again, he is the one who will have to help me move from bed to chair if I am to go home sooner than later.

Food!!  On the food front, this was a BIG day.  First, I finally got the tube out of my nose that went down into my stomach.  Hurray.   I am now totally on my own to eat.  It feels great.  I got to clean out my nose for the first time in weeks.   I am coughing less.  The tube abraded the skin under my nose, which I am treating with cream.  

To celebrate my new food status, Daniel drove 1.5 hours in traffic to Mama Dips in Chapel Hill.  He got me Chicken and Dumplings and yams, Chicken Fried Steak and Pecan Pie.  It was even better than the imaginary Chicken Fried Steak Daniel prepared for me three weeks ago at New Hanover Regional Medical Center.  Yummy, yummy.

I need your help.  Someone sent me a book entitled "Take This Bread"   I am reading it and loving it.  But I do not know who sent it to me.  The card got separated from the book in the transfer through 3 hospitals and 5 changes of hospital rooms.  Please tell me who sent me this wonderful book.  And Thank you.  I am loving the book.

Speaking of gifts this Christmas, we have all of the Gifts we need.  Your kind thoughts and prayers are truly God sent gifts.  We need no more.  If you are stuck on giving, please donate to the Heifer Foundation or Save the Children or Kiva.org

After my 2.5 hours in the chair a I priest from Duke Hospital came with a CPE student to give me communion.  I loved being anointed and experienced a deep joining with God.  We read from my familiar red prayer book.  It was not quite like being with my friends in Boston but it was a very good substitute.

I am looking forward to returning to Wilmington, to complete my rehabilitation, when it is sensible to do so.

Bonnie for BanD

Day 58 - Bonnie's dead toes come off Monday at 10:30 AM - Prayers for Bons please.

Day 58 - Bonnie's dead toes come off Monday at 10:30 AM - Prayers for Bons please.  For those who want to visualize where Bonnie is here are some clues.

Duke University Hospital photo and map. 

/Daniel for BanD

Day 59 - Bonnie's surgery went well. She is alert and managing her pain with a button.

Bonnie's surgery went well.  She is alert and managing her pain with a button that releases a pain medication into her veins.  Bonnie is in good cheer and wanting kisses and more kisses.  Morphine equivalents look good on her.

The surgeon was very happy with how cleanly she was able to remove Bonnie's toes and small portions of her metatarsals (forefeet) and happy to confirm that Bonnie's venous flow is excellent.  She said the skin under Bonnie's feet is solid and will heal nicely. 

The surgeon says Bonnie should be able to start putting weight on her heels and return to rehabilitating her legs in three days, circa Friday.  They will fit Bonnie for special shoes to allow her to strengthen her quadriceps.

Bonnie resumed her arm exercises in the recovery room.  Pretty funny huh?

/Daniel for BanD

Day 60 - no phone service

I'm doing ok. The night after surgery I spent A VERY VERY painful night.  No amount of dope would relieve it.  I must have gotten relief by 3am; Islrpt unti; 8 and woke up without pain.  I still havw occational pain, but I'm doing OK.

I;ve moved to a 2nd floor room where I get no cell service.  To call me, you need to call the hospital aask for me,or call my room at 919-681 2108  

My bandages are supposed to come off tomorrw so that I can start  rehab.  Drs are very enthusuastuc about rehab.  It has now been 2 nonths in bed. 

I cant seem to load yahoo,and so a comment here is the best way to rach ne other than hosp phon,

I love you.

B  BandD

Day 62 Recoverying . . . sort of

Thank you for all your wonderful comments. I've read and reread them.  Daniel is recouperating on Oak Island.

I just finished almost three hours of sitting in a chair.  A sit up gets easier every day.  I'm able to do both arm and leg exercises in bed also.  I'm getting more flexible.

My chief medical issue right now is my left eye.  It has an ulcer that we believe is like the one that led quickly to a hole in my eye. It is now covered and shut, but not sewn.I will be loaded into a wheel chair to go to the opthamology cinic next week.

I've lived day to day for years; now I'm living hour to hour, never knowing what is happening next.

CNN provides me with a 24 hour  soap opera.  My prayer  book is a comfort.  Reading your comments helps me feel a community around me. I finished the Sara Miles book;  I'm still in wonder about how well she descbes the mystical experience known as Eucharist.

I love and appreciate your good thoughts and prayers

B for BanD

Moving again

Tomorrow I leave this hospital for one with a 30 bed in patient rehab facility.  I will be doing 3 hours of therapy a day.  Tooth brushing counts as occupational therapy.

Here is the facility:

http://www.durhamregional.org/services/durham_rehabilitation_institute

I'll be on the 7th floor and should have good cell phone service.  I will be out of my room a lot.  The phone number I posted won't reach me after today.  Im glad I posted it because I have gotten so many great calls.  After today use the cell number 650-324-3816,

Today I was able to stand 4 times with the help of a machine.  I see now that my half feet will be as much of a problem as my totally weak leg muscles.  Your prayers will give me strengh and courage.  Thank you for your comments.  I read and re=read them.

Love and gratitude, Bonnie

Day 67 - Christmas Eve - Duke Hospital

It is Christmas eve.  

The night I used to put out presents for our children and my wife.  

This year we have no tree and no children or grandchildren around.  

Bonnie is laying in a hospital bed a block away.  I am in an empty hotel.

I have no presents, not even for my wife. 

The best I can do is to write here “On why I love my wife”  

Bonnie is smart.  

She is beautiful.  Her eyes smile.  

Yesterday she had her left eye sewn shut, without proper anesthetic, causing her great pain. 

The doctor hopes to save her left cornea, at least until she learns to walk on her amputated feet.  

In a month they may have to transplant her cornea and lens.  Hopefully Bonnie will no longer have Graft vs. Host Disease. 

I walked into her hospital room on Christmas eve and Bonnie's right eye smiled.  

Bonnie continues to smile, even though she continues to be dragged through the trials of Job.  

Medically speaking, Job could not have endured as long as Bonnie: In Job’s day there was no CPR, intubation or pressor drugs, no Dialysis, no Vancomycin or Prednisone, no Voriconazole or tracheotomies.  I have begun to wonder about our wonder drugs. 

I love my wife because she is full of Grace and she keeps turning toward Life.  Bonnie is full of thanks.  

We thank you each for your prayers and kind wishes. 

/Daniel for BanD

Day 68 - Christmas - Duke Hospital - tomorrow Bonnie moves to Durham Rehabilitation

Today is Christmas.  Bonnie wanted an Egg Nog latte from Starbucks.  I drove around Durham trying to find a Starbucks or a grocery store that was open.  No luck.  

I finally found a BP gas station with a convenience store and bought the last quart of Egg Nog.  The owner wished us a Merry Christmas.  Duke Hospital has a Cafeteria that serves Starbuck's Coffee.  Bonnie and I mixed up our own Egg Nog Coffee's in Starbuck's cups.  It felt pretty festive.  

I got to help bathe Bonnie.  She is beautiful.  Her skin is healing, though the Tegaderm wounds on both shoulders and her breast remain pink and tender.  Her calves have atrophied significantly.  

Bonnie's legs were down to skin, bone and tendons.  70 days off of one's feet is a very long time.  Bonnie's quadriceps were similarly shrunken.  But since Bonnie has been doing her leg exercises her quadriceps are returning!  Her thighs are filling back out very nicely.  Her upper legs are quite strong.  

Bonnie has new shoes and she loves new shoes.  They are a very special shoe, very new on the orthopedic market.  This is the first time Duke has dispensed them.  They are like a cross of high top Nike basketball shoes AND open-toe Birkenstock sandals with Velcro closure straps.  These black suede shoes support Bonnie's foot and protect her foot surgeries.  

Getting fitted for state-of-the-art shoes, is one of the reasons I worked so hard to get Bonnie to Duke's Orthopedic Surgical Clinic.  Bonnie stood up in her new shoes, three times yesterday!  What a Christmas present!  

In 4 weeks, Bonnie will have to be fitted for complex orthopedic devices to allow Bonnie to walk without toes and the front portion of her forefeet.  These devices consist of carbon fiber insoles that go the full length of her shoes.  These insoles are connected to padded carbon fiber leg braces that wrap around her shins and strap behind her calves.  Of course there are also some compound foam inserts to fill out her shoes where her toes were. 

The toe fill-in devices will contact the site of her foot surgeries and have to be expertly fitted so as not to exacerbate Bonnie's wounds.  Everything has to work in concert with the carbon fiber braces and her legs.  

It will take at least a couple of specialists to enable to Bonnie to walk effectively, without producing chronic pain.  So we are doing everything we can to keep Bonnie near these specialists at Duke Orthopedic Clinic by doing her rehabilitation down the road at Durham's Rehabilitation Clinic.  

Now, to fill in the mystery surrounding why Bonnie's eye lid was sewn shut a couple of days ago.  

Monday 15 December, 60 minutes before Bonnie's amputation surgery, I noticed that Bonnie's left, transplanted Cornea was dented and was apparently deflating.  I feared that it had perforated again.  The Bone Marrow Transplant doctor on duty failed to notice it during his pre-surgical examination, despite the fact I had pointed to the problem with Bonnie's left cornea while he was examining her eyes.  He said, impatiently, "We will get back to this when I finish my exam".  He did not get back to it.  

Here is the issue: Bonnie's cornea went from "thinning" to perforation in a record time of 2 days, just 11 months ago.  Her perforated cornea allowed the aqueous fluid in her eyeball to leak.  If this leak had not been fixed in an emergency surgery, it would have caused Bonnie's eyeball to deflate and/or become infected.  Bonnie needs another complication like a hole in the head.

When Bonnie came out of her amputation surgery, I had to insist that an Ophthalmologist be called to inspect her eye while she was in the post-surgery recovery room, much to the annoyance of the Bone Marrow Doctor attending to Bonnie.  On the other hand, the Duke Ophthalmologist immediately saw that Bonnie's left Cornea was depressed and "thinning".  

Bonnie has been attended to by a Duke Ophthalmologist every day for the last week.  Two of her three eye doctors have been in touch with her renown Eye Surgeon at Mass Eye and Ear.   All of her eye doctors are concerned about saving her transplanted cornea and not allowing it to perforate as that would again threaten Bonnie's left eye.  

The eye doctors are having Bonnie put preservative-free eye drops in her left eye every hour and putting antibiotic drops in her eye 4 times a day.  Seven days after I first noticed the depression in Bonnie's cornea, she was finally able to get into a wheelchair and get down to the Eye Clinic for a full and proper eye examination.  The doctors confirmed that she has an "ulceration" of her left cornea.  They quickly decided to sew her left eye lid shut again, to minimize severe dry eye and to protect her cornea from the blinking action of her eyelid.  

The Doctor did NOT agree to put placental tissue over her eye which is the maximum fail-safe procedure done in February 2008.  We were not consulted if our objective was to try and save this transplanted Cornea.  There was no discussion of the treatment plan.  Bonnie sat in a wheelchair for 3 hours to have this consultation.  The Senior eye Doctor flitted in and out of the exam room 5 times, staying no longer than 100 seconds at a time.

The Senior eye Doctor said his clinical judgement is that Bonnie does not have Graft vs. Host Disease.  This discounts that Bonnie has a very dry mouth and severe dry eye, which are the signs of her CGvHD.  The Senior Ophthalmologist did not consult either Bonnie's previous eye surgeon nor the graft vs. host specialist who treated Bonnie's eye for the last year, both of whom had seen Bonnie 10 days before her fall. 

He also did not have time to review the photographs I had open on my Mac of Bonnie's cornea transplant surgery.  He repeatedly said he had never heard of Bonnie's renown surgeon at Mass Eye and Ear, she must be new.  Dr. Colby has been there for 14 years and is an assistant professor at Harvard Medical School.  He repeatedly told us that Bonnie's previous surgeon (Dr. Colby's) stitches were "too loose" without looking at photos of the stitches taken at the time of the surgery.  

He calculated aloud that if Bonnie's current transplant fails, she will get another transplant done in 30 days at Duke, or as soon as the transplant fails.  

We did not get to discuss this strategy, nor the fact that IF Bonnie has a transplant she will need to be refitted for a new Scleral Lens to address her now permanent case of Severe Dry Eye.  Fittings for a Scleral Lens can only be done at The Boston Foundation for Sight in Needham, Massachusetts. 

This is another time I have failed to do an adequate job as Bonnie's patient advocate.  I simply let Bonnie be forced into a surgery, without being fully consulted, so as not to be a "trouble-maker".  Now we are left to HOPE that Bonnie's transplanted Cornea does not perforate.  We pray that her left cornea will thicken AND it will re-grow it's covering epithelial cells without the aid of the placental tissue, which was required last time. 

Given my fatigue and inability to keep Bonnie in the driver's seat on each treatment, Duke has been a mixed blessing.  There has not been a whole lot of consulting the patient going on here.  Despite Duke's wonderful posters and rhetoric, Stanford University and Brigham and Womens and Dana Farber Cancer Institute and UNC-Chapel Hill Hospitals have proven to be far more willing to discuss treatment plans before committing us to a course of action.  

Tomorrow Bonnie will move to Durham Rehabilitation Facility.  

Today we are counting our blessings, which include clean drinking water, some amazing nurses and skilled doctors, and the love of family and friends.  

Daniel for BanD

Sunday after-Christmas letter

 Those of you who have been reading this for a while know I LOVE Christmas.  The Episcopal Church is the church of Christmas day.

 

This is the day we celebrate God’s coming into us. In and through Christ, we are God’s hands in this world.

 

Throughout Advent, I wondered, even worried, about how I will be able to serve.  The day before Christmas, I got one of those angel kisses that remind me from time to time of God’s closeness.  Here is what happened. 

 

Daniel and I had been talking about how we could clean my hair that hadn’t been washed in two months.  Daniel went to ask people at the nurse’s station.  He came back with an amazing man and his clever equipment.  He is a professional hair dresser; his most clever equipment was an inflatable sink that went on my bed.  I got a great haircut.  As we talked to him about how pleased we were with his work, we learned that he had to leave a career in NYC when he became disabled.  He talked proudly about his hair work as God’s ministry.  Kiss, God reaching out to me to show the infinite variety of service.  His mission goes beyond cutting hair.  He has written a case base study guide to influence other beauticians to do hospital work.  He has worked on the legal requirements that lead hospitals to decline such services because of liability.

 

With clean, cut hair and an amazing story, I was set for Christmas.  It was simple; my sweetie anf eggnog.  I think Daniel has written about his eggnog adventures.  All the Pollards came to see me in my new rehab home. More later on this.

 

I’m on the 7^th floor and have great cell phone service.

 

Bonnie for BanD