Bonnie Recovery

In Cambridge - Seeing 5 MD specialists, our grandson and daughter.

We flew home from two weeks in Northern California, where we saw old friends and colleagues and filled our hearts with their friendship and our lungs with sweet Pacific air.   Bonnie has not been back to Palo Alto for three years.  We even got to go to our home church, with Shingdup Rinpoche.  But that is another story.  

We were only home in NC for a couple of days before we had to drive up to Boston to see Bonnie's team of Medical Doctor specialists.  We were delighted to see Dr. Corey Cutler who is an amazing researcher, practicing Bone Marrow Transplant physician and a mensch.  

Bonnie's Graft vs. Host mouth and dental specialist treated the persisting deep trench-like sore in Bonnie's mouth and she is already feeling a bit better.   

Bonnie's eye surgeon was able to determine why Bonnie's left eye was hurting so much recently.  There were three stitches that had started to pull out of her cornea and rubbing against her Scleral Lens.  The cornea is the most pain-sensitive area on the human body.  

We go to see the Scleral Lens doctors tomorrow to get Bonnie's lens checked and re-manufactured if her eyeballs have continued to change shape.  She could not live without constant doses of morphine if she did not have these miraculous lenses.  Bonnie still is forced to take morphine to deal with the pain some days.  Extra Strength Tylenol is sufficient pain relief for her on other days.  

Since we are staying in guest housing on the Episcopal Divinity School Bonnie got to go pray in her familiar chapel... on Yom Kippur.

We saw our beautiful and funny grandson Jackson.  He proudly informed me "I will turn 4 when it snows".  It looks like our daughter Debrah will finish her PhD in Virology at Harvard Med this year or next.  She looks beautiful and overworked.  

Bonnie continues to be amazingly resilient and upbeat despite being in pain much of the day from several different sites of distress in her body.

We are off to drive to Georgia to see a friend's ordination tomorrow after the Scleral Lens doctors bless Bonnie's eyes and lenses.  

Thank you for your prayers and love. 

/Daniel for BanD

Bonnie is in Critical Condition. Please pray for her peace.

Saturday morning Bonnie fell and hit her head on the hardwood floor in our beach house.  Bonnie fractured her right cheekbone and bled.  She has some brain hemorrhaging and trauma to her chest. 

I was in Chicago to take my mother to her skin cancer surgery.  Mom had to be completely off of her feet for 2 weeks, with a potty chair beside her bed.  I flew to Chicago to do the in-home care.  My sister is a social worker and she could not leave her clients.  Beverly also needed a break from the responsibilities of being the "in-town" daughter of our 87 year-old mother.

I was not there when Bonnie fell, so she calmly called our nearest family member, Linda Pollard.  Bonnie had the presence of mind to tell Linda to bring a key to get into the house, as the front door was locked and she could not get up.  When Linda arrived Bonnie was cogent and asked Linda for water.  Bonnie knew she could not drink from a glass laying down and was able to direct Linda to the hidden stash of bottled water.  

Linda called me in Chicago after she called 911.   We collaborated to get Bonnie to the local hospital WITH her list of past treatments, medications and allergies, and her laptop which had all of this information.

I spoke to one of the EMT's who arrived to carry Bonnie out the door.  She must have been hired for her brawn as she was clueless as to the meaning of "AML", a "Bone Marrow Transplant" and being "immune compromised".  "How do you spell Marrow?" she asked. 

Fortunately Linda was there to find the laptop, AC adapter and Bonnie's cellphone and charger so we could provide the hospital with Bonnie's medical history and the various doctors' telephone numbers at Dana Farber Cancer Institute. 

I made a reservation for the first flight to Wilmington NC, which promised to get me to the hospital in 13 hours, just before midnight, and prepared Mom's morning meal and medications and went downstairs to coordinate Mom's care with the Hyatt Classic Residence health care nurse.  Since there were no empty beds at the Care Center, I called to hire a 24/7 nurse service.  I changed my mother's surgical dressing.  My sister, came to take care of Mom and to orient the new nursing staff to Mom, her medications, and the post surgical instructions and the apartment, while I ran for the airport.  So much for Bev's much-needed respite.   

Of course US Air oversold the flight so when I arrived to the gate they had filled every seat.

In the meantime, Bonnie was taken by ambulance to the local hospital in Southport, NC and treated in the Emergency Room.   Her blood pressure was dropping and she was having difficulty breathing.   They performed an endotracheal intubation which is a medical procedure in which a tube is placed into the windpipe (trachea).  This was done to open the airway to give her oxygen.  Shortly thereafter Bonnie's blood pressure dropped to zero and her heart stopped.  They performed CPR and got her heart working again, apparently quickly, but her blood pressure remained dangerously low. 

When the local hospital had stabilized Bonnie as best they could, they put her in an ambulance to the New Hanover County Regional Hospital in Wilmington, which is about an hour long trip.  Bonnie was whisked into the Surgical Trauma Intensive Care Unit. 

Scott, our son-in-law, called to tell me that they needed her Advanced Directives, but it was NOT on her computer.   I suggested that it was on file at Brigham and Womens Hospital in Boston as a part of her 400 page patient record and then had to board the next flight to Charlotte, NC.

From Charlotte, I connected to Jacksonville NC, where they had no rental cars at 11:30 PM.  So I took a taxi cab the 90 minute ride to the hospital in Wilmington.  Here is how I found Bonnie Sunday 19 October, 2008.

Bonnie is on 3 "pressor" medications to keep her blood pressure up and she is on a breathing apparatus.  She is connected to 6 pumps that feed her intravenous fluids, anti-biotics, anti-fungals, and an anti-viral drug or two.  She is running a 101.6 fever and from the blood cultures seems to be have one or more infections that they can not yet trace to a specific site or organ.   

Bonnie is being force-fed some liquid food through a tube down her esophogas, and she has a catheter, heart monitor, blood pressure sensor inserted into her chest, and an oxygen saturation sensor inserted into her finger.   There are also some other tubes and wires draped over her body, leaving only a small area over her heart to lay her hand-hammered silver cross.  She was not responding to touch or able to move her hands or toes when I arrived at 1:30 AM Sunday morning.

The doctors are not able to do all of the tests and scans of her head and chest they would like to do since Bonnie has not been stable enough to undergo normal scans.  From the quick looks they have taken, I am informed that Bonnie has a fractured cheekbone, a fractured C4 vertebrae,  brain hemorrhaging, a very high white blood count, low platelets and a fever. 

I "slept" on a two seat couch in the florescent lit waiting room of Surgical Trauma Intensive Care Unit 1.

Sunday morning Bonnie was stable enough for a better chest scan.  They discovered that a lobe of her right lung had collapsed.  They whisked her into surgery and inserted a tube into her chest, with good result.  Her lung re-inflated and her blood pressure and pulse went up into a normal range. 

HOWEVER, the doctors are quick to point out that her heart and blood pressure are in a normal range ONLY because they are keeping Bonnie on very high doses of three drugs used to revive a patient from cardiac arrest.  If the breathing tube or the 3 pressor drugs were withdrawn Bonnie's blood pressure would drop to zero.  

But Bonnie is responding to touch, and able to squeeze our hands when requested, and to wiggle her toes.  Bonnie can force herself to open her eyes when asked, though with all of the goop in her eyes she does not focus or see.  I get the sense that Bonnie is being patient and persistent and waiting to see, as are we, if life is going to be possible. 

Tomorrow and the next day we should be able to get more scans and tests done.  We can then see where we are against the criteria in Bonnie's living will and advanced health care directives. 

Bonnie has never prayed that her life be spared or extended - only to understand what service she can be to God and the people around her. 

Your prayers for Bonnie's peace and strength along this next section of our path are most gratefully received. 

I personally pray that the Bonnie who recovered from AML and 4 rounds of chemo, a Bone Marrow Transplant, and twice had to recover her ability roll over in bed, and to be taught how to sit up and eat soup,  and how to stand up, and how to walk and how to climb stairs so she could graduate from her Divinity School --- yes, THAT Bonnie I pray will be able and willing to recover one more time.

I pray that the face that has lit up my life, will return with her unusual grace, humor, light and wisdom, and that I be will be able to continue to live and converse with our Bonnie.

    Photo of Bonnie at Mary's Ordination - 12 October 2008 - taken by BK

Thank you for your love and support.

/Daniel for BanD

Day 3 Critical but stable condition - some improvements - grounds for hope.

Yesterday Bonnie was in Critical but Stable condition.  There have been some improvements, grounds for hope.  Prayers around the world are ascending.  

The brain surgeon says that her head injuries are NOT serious and the blood from her brain hemmorahge will be reabsorbed.  Her checkbone will heal on it's own and her head and neck injuries are very low on the list of her issues now.  They took the collar off of Bonnie's neck.  

The brain surgeon approved Bonnie for a preventative surgery to install a blood filter in the vein going from her legs to her heart to prevent a blood clot from spoiling Bonnie's day.  They successfully completed that surgery yesterday afternoon.  

Bonnie is doing more and more of her own breathing and her blood gases are better.  

Bonnie is off one of the three "pressor drugs" which keep her blood pressure up.  They are weaning her off one of the other two pressors as fast as her blood pressure will allow.  This is the highest risk factor as these drugs are shutting down her kidneys.  She dropped below the urine output they consider an acceptable minimum and her creatine and BUN counts are way too high.  But she has gone through kidney failure and dialysis before, so she knows this road back to health.  

Pneumonia is Bonnie's other high risk issue.  It took a bunch of calls to Dana Farber to get close to the right antibiotic that Bonnie can tolerate.  She is deathly allergic to Penicillin and related drugs.  

I searched through 500 hundred pages of her patient record to find the 65 pages of her past medicines, which Jennifer had converted to a PDF / full text searchable form and sent the file by email to Bonnie's doctors in under two hours.  The doctors are now happy with their choice of an "atomic bomb strength drug" that targets the kind of pneumonia Bonnie has.  

Our daughter Debrah listened to me by phone and I got to talk with my grandson Jackson at some length.  They are both are sick with bad coughs and colds.  I asked Deb not to come from Boston now.  We are an amazingly functional family.  

Bonnie has been more conscious and present in her body and responding to our voices, though she has to be given morphine and other drugs that keep her comfortable and mostly unconscious.  Just before surgery yesterday the doctor had to check her chest for fluid as she has a pneumonia.  As he did Bonnie lifted her arms to allow the doctor to access, in her usual helpful manner.  If this arm movement were part of a Japanese Noh play her arm lift would have signaled an act of Will and Co-operation - done in a mood of "Oy Vey, here we go again".  

Bonnie is a true Rhetorician - always seeking to express the obvious and the subtle in the fewest words. 

Bonnie's daughter, Jennifer and her son Ron are by her side all day and they are realistic, hopeful and resourceful.  Jennifer is an active advocate, checking all details, while I scurry to get the doctors the information they are missing from Bonnie's patient record. Jennifer checked on what anesthesia scheme they were going to use for Bonnie's surgery.  Then she looked the doctor in the face and asked if Bonnie has successfully endured that scheme before.  

Jennifer is calm - and like a mother hawk.  Ron talks to his Mom.  Both seem to find the conversation a natural expression of their way of playing "bridge".  Bonnie so appreciates her adult children for their gifts and different ways of being in the world.  We are so blessed by family and friends. 

Thank you again for your prayers.  

Bonnie's medications and treatments had not changed for 48 hours but as more and more people prayed she got more and more present and threw off the need for more and more of her life support measures. 

God bless the world.  Bonnie would urge us all to vote.  

/Daniel for BanD

Day 4 Bonnie continues to be in Critical Condition with a few improvements.

Bonnie continues to be in Critical Condition with a few improvements.  She is completely off of two of the "pressor" drugs that are used to regulate her blood pressure.  Bonnie is down from 10 to 3.5 mgs/hour of the last pressor drug.   This should relieve some of the stress on her kidneys.  

The brain surgeon assesses that Bonnie does NOT have brain damage and she is doing a bit better, so we have rescinded her "Do Not Resuscitate" orders.  The trauma specialist says that this is prudent only if we accept the fact that Bonnie may well experience a runaway infection, pneumonia or multiple organ failure.  He says that Bonnie is a Trauma Patient cubed - 1)  the trauma of the fall, 2)  her medical history including Chronic Graft versus Host Disease and heavy doses of Prednisone 3) her other "comorbidity factors" like her age, and her previous heart and kidney failures.  This all adds up to what he calls "A Perfect Storm", and while the improvements are good, he remains pessimistic.  He says he anticipates that Bonnie is going to die.  

We are clear about the risks, and accept the challenges we all are facing.  We will reinstitute her "DNR" orders if and when Bonnie has run out of viable options.  In the meantime, we are following her Advance Directives to give her every chance to go through any treatment that promises to provide her with a meaningful life, enjoying conversations with her adult children, playing with her Grandchildren and serving in her Church.  

Bonnie is being kept sedated to keep her "comfortable".  She has multiple tubes down her throat and swelling of her face due to her broken cheek as well as the effects of Graft vs. Host Disease on her eyeballs, cornea and mouth.  

Bonnie's face and legs are now swelling because her kidneys are shutting down their output.  She is down to 15 ml per hour, where 30 ml is the acceptable minimum.  We met with the kidney specialist today.  We are playing it day by day, but I expect that Bonnie's kidneys will officially fail tomorrow.  This will necessitate the insertion a dialysis port into her inner thigh and beginning dialysis.  The strategy seems to be to put off dialysis as long as possible to give Bonnie's heart a chance to normalize and to get her off the blood pressure meds.  Dialysis is a strain on the heart.  In 2002, it caused Bonnie to experience heart failure.  

Ron and Jennifer continue to be wonderful.  They each have their ways of talking with their Mom and being supportive to me.  It is a relief to be with them.  Jennifer wanted to come back to the hospital to manage the doctors and nurses after the shift change, so the Doctor and Nurses know this is not just a random patient laying there but my wife and her mother and that we are very active in her care.  

Late this afternoon I went and got Bonnie an iPod Nano and put her favorite music on it.  At 7:30 PM I went back to the hospital and put the headphones on Bonnie's head and played her favorite recording of a sung Mass recorded in our church in Palo Alto.  

I called Jennifer to suggest that she allow me to manage the shift change so she can get some rest.  She is doing so much, with three young kids to care for.  This IS a marathon and unless a caregiver has experienced "hitting the wall" as I have on several occasions, they just do not get how vital it is to pace one's self for the long, long, long haul.  

Tonight's doctor is trauma surgeon who is barely familiar with Bonnie's case.  I pray that she will have a quiet and restful night.  

I was able to speak with my Jungian therapist today and with my spiritual friend Shingdup Tulku Rinpoche.  Each conversation was very helpful.  Loving another in health and sickness is an amazing exercise that brings to the fore powerful lessons.  I am beginning to see the opportunity in being truly vulnerable and humbled by life out of control.  

I am learning from Ron and Jennifer which ropes to skip and which ropes to jump.   I deeply enjoyed being alone with Bonnie tonight as she listened to her church music and I got to kiss her on the forehead.  It is such a familiar feeling.  Bonnie is right there though deeply unconscious tonight as if in a deep, deep sleep.  I pray that I will have more time with Bonnie and give great thanks for the years we have had each other. 

Thank you for your prayers and kind thoughts and words.  They do make a big difference to all of us.  I am not able to respond to each message as it comes in.  Please forgive me.  

/Daniel for BanD

 

Day 5 - Bonnie in Critical Condition

I am very tired, so I will be short here.  Bonnie continues in Critical Condition.  Her heart is doing better.  Today her kidneys continued to decline toward total failure.  She was only producing 5-10 ml of urine/hour with the bare minimum being 30 ml/hour.  Her liver is also failing.  They did an ultra sound of her liver looking for an obstruction or other physical causes.  They found none.  Bonnie is puffing up due to the excess fluid in her body.  She looks like she has no neck, or ankles and no knuckles on her hands.  She was given Lasix which helped bring her urine production back up to 30 ml. but she remained bloated and puffy when I left the hospital at 9PM.  

The Trauma specialist said it was okay for Bonnie's son to go back to LA, as she was not likely to die suddenly in the next days, though he is still very concerned that she will suffer from multiple organ failure in the next week or 10 days.  We had the option to move Bonnie to Duke Surgical Intensive Care Unit but elected to keep Bonnie at the New Hanover Regional Medical Center since they are practicing Traumatic Medicine near the state of the art.  

We can thank guns, alcohol, automobiles and people who mix them for advancing Traumatic Medicine to such a high art.  We also want to send a shout out to Vice President Dick Chaney for making it socially acceptable to shoot a friend in the face while "recreating" with a shotgun.  Dick, your work in Iraq and at home has accelerated the maturation of Traumatic Medicine.  

We also did NOT move Bonnie to Duke University Hospital, 3 hours away, because I want Bonnie in Wilmington:  I need Jennifer to help me do everything we can to bring Bonnie home.  

I had Bonnie listening to the Dali Lama chanting a healing meditation for an hour and then listening to her minister and choir singing a full mass in her Palo Alto Episcopal Church she so loved listening to during her 59 day stay at Stanford U Hospital in 2002.  Bonnie was unconscious all day listening to her iPod and Sony studio monitor headphones.  On the other hand, Bonnie can "come to" and cooperate with her nurses when they really arouse her. 

I have been arising at 7 AM and turning out the light at 2AM and am having weird dreams.  I must turn of the light now or I will burn out soon.

Please continue to pray or hold Bonnie in your thoughts.  Since people began to pray for her Bonnie has gotten a bit better everyday.  

/Daniel for BanD

Day 6 Critical but stable condition - time is becoming a jumble

Day 6 Bonnie in Critical Condition

Jennifer was at the hospital with Bonnie for the “early shift”.  The Nephrologist came in and said they were going to start her on continuous Dialysis as it puts less strain on her heart.  Jennifer signed the release to insert a port into Bonnie’s thigh and to start the Dialysis when they are ready.

Jennifer is feeling sick so I relieved her at noon.  She went home to get some rest.  Bonnie is putting out 55 ml of urine but is even more bloated than last night.  She is listening to her church music and opens her eyes when the clean her mouth. 

I will have to leave her room while they do the surgery to insert the port in her thigh and hook up the Dialysis machine.  They say they may switch her to the bigger faster pump that runs 3-4 hours a day if her heart proves to tolerate the initial more gentle Dialysis.

They think that the reason Bonnie is staying unconscious most of the time is that she has had some much medication and such poor kidney and liver function that she still has much of her meds and waste products “on board”. 

I am surely hoping that the Dialysis reduces the excess fluid and pressure in Bonnie’s body and reduces the strain on her organs, heart and lungs. 

Bonnie is doing her job as a patient very well, as usual.  The doctors and nurses are doing a great job of coordinating action and being exceedingly careful to not “rock the boat”. 

I am praying for clearer Blood, less fluid and the restoration of her kidney and liver function.  Her grandson would like to have her cutting out the Halloween cookies for his birthday using the special cookie cutters she bought. 

Okay, they installed the port in Bonnie’s thigh and have the Dialysis machine running.  Blood is pulled out and through the machine which filters her blood and puts it back into her vein to return to her heart.  Of course the machine is 5 feet by 2.5 feet by 1.5 and draws 500-600 Watts and does not do nearly as good a job of filtering Bonnie’s blood as her kidneys when they are in good order. 

/Daniel for BanD

Day 7 Bonnie in Critical Condition.

Bonnie continues to be in critical condition.  Her "numbers" are a bit better, but they have decided that she needs dialysis.  This afternoon they surgically inserted a port in her inner thigh and hooked up a 24 hour a day dialysis machine to filter her blood as her kidneys and liver are not doing their job.  She continues to be very bloated with extra fluid.  The bruises on her face are slowly changing color and the bruises on her left shoulder and right side are pretty massive and purple red.  Her lips show dried blood from her mouth.  They are trying to swab her mouth to deal with the GvHD but her mouth is bleeding. 

I shudder with pain as I look at her and kiss her forehead. 

Please pray for Bonnie's comfort and peace. 

/D for BanD

Day 9 - Critical Condition - Tracheotomy - Purple Toes and Feet.

Jennifer was at the hospital early.  I arrived at about 9:30 AM.  Bonnie is still very puffed up, though her urine output is better and the dialysis machine is doing it's job 24/7.   The Nephrologist says they have taken 7 kilos of fluid off of Bonnie's system.   Her face, legs and hands and feet are still very swollen. 

Bonnie is now absorbing pre-digested formula through a feeding tube.  That her digestive tract is working again is a good sign because much of our immune system comes from our gut.  Bonnie's liver function numbers were better.  But Bonnie's core temperature was down to 95 F, which is getting too low.  They have had a lightweight set of tubes full of hot air that form a blanket over her body to warm her up but she remained between 35 and 35.3 C or 95.5 F all day. 

We approved doing a Tracheotomy to get the tube that is going down Bonnie's throat OUT of her way.  The breathing tube is apparently making Bonnie very uncomfortable.  We hope to get Bonnie off of some of the Morphine to be able to have her more conscious and helping in her recovery.   Having a breathing tube going into her airway through her mouth makes it difficult for her nurses to do the mouth care she needs. 

She is particularly vulnerable to an infection in her mouth because of her Chronic Graft vs. Host Disease of the mouth.  Bonnie bleeds and grimaces when they clean her mouth with a special soft sponge suction tool.  Signing the form was easy, but we noticed more issues and had more questions.

We wanted to know if Bonnie's purple feet and black toes were a sign that she had lost all circulation to her toes and her feet below her arch?  The nurse and Nephrologist (kidney doctor) said they did not know but it was probably an effect of the "pressor" drugs, which did vaso-constriction to keep her blood pressure up high enough for her to have lived through the first few days. 

The Nephrologist did not know if she would lose her feet.  We asked for the Trauma specialist, but he was in surgery.  He came in a few hours later, between surgeries.  He thought she may lose her feet, but it would take a Vascular Surgeon to look at her feet to know better.  In closing, the Trauma specialist said that as "an over Gestalt, he had not seen the rally over the weekend that he thought would be necessary".   In his gentle elliptical way, he was pointing back to his prior prognosis that if Bonnie did not get better quickly she would likely succumb to infection or multiple organ failure. 

Jennifer and I had to discuss if Bonnie would endorse going on with these heroic medical measures if it required having her feet amputated.  Jennifer pointed out that her fingers on her hands had been black under the nails and purple at some of the tips and this had seem to reverse it's self over the last couple of days of dialysis.  I concluded that Bonnie would prefer to live without feet if she could enjoy her grandkids and her spiritual life. 

But I had to call our minister from our old Palo Alto church, Margaret Irwin, who had retired to Wisconsin for my own care.  I asked Margaret if she would act as a minister for me now.  She agreed.  I unfolded my ethical dilemma with her and her husband Paul.  As I laid out the situation I was able to distinguish my role as Life Partner vs. Caregiver.  I was having to fathom the commitment to taking on a lifetime of long term care of a Bonnie who might not be able to walk.  Of course, there is my other role, as Patient Advocate, with a durable power of attorney for Bonnie's advanced directives. 

I realized that I was willing to take care of Bonnie, as she is a wonderful person to be around, even when she is in a diminished capacity.  What a thorny question this would be if the patient is truly difficulty or abusive.  I could also see, in my role as Patient Advocate, that I understand that Bonnie aims to take every reasonable medical step to recover if she can be a  Grandmother and a spiritual advisor in her church. 

I see I am going to have to rethink my choice and advice to all able-bodied spouses to become both caregiver and patient advocate.  There can be inherent conflicts that could cause one guilt and suffering, especially in a conflicted or non-supportive family. 

Jennifer and I agreed we should go forward with the Tracheotomy and consult the Vascular Surgeon asap.  Jennifer called her brother Ron.  I can not easily imagine what I would do if we were not as functional and supportive as we are as an extended family.  Jennifer and Ron have clearly inherited some of the best traits of their grandmother and mother, and father, not the least of which is being level-headed even when tears come to their eyes.  They go beyond having opinions and preferences.  Jennifer and Ron can think, and think through complex issues and then speak their truth. 

I went in after Bonnie's tracheotomy and she was much less encumbered without all of that gear going down her throat.  The nurse says Bonnie was relatively alert during the surgery.  Bonnie apparently cooperated with the nurse when she asked Bonnie to swallow after the surgery to help get the feeding tube that is inserted in her nose down and positioned properly in her gullet.  

I asked Bonnie if she knew who I was.  She opened her eyes and saw me and there was some recognition in her eyes.  I told her it was Daniel and that I loved her.  I asked her if she knew where she was.  She closed her eyes.  I speculate she was tired of 20 questions and from her efforts all day. 

The nurse and I rearranged her to be higher up in the bed so her toes did not touch the foot of the bed.  Her toes take on the impression of whatever they touch.  Bonnie's arm fell out of the bed when I lowered the bed rail to grab the pull-sheet to position her higher up in the bed.  I suddenly got how close we are to Bonnie's biological end. 

Bonnie has to rally in the next day or two, I think, or I fear we will lose her.  I can not do anything more than pray for her and pray for guidance on how to administer / serve her wishes. 

Please pray for her kidneys and liver and heart and brain to continue to heal and particularly for her feet to clear and for her to regain full circulation to her toes, feet and fingers. 

/D for BanD

Day 10 - Bonnie's numbers continue to improve - but ...

Bonnie's liver numbers, kidney numbers, pulmonary function, heart and digestive tract numbers continue improve.  Bonnie's face and legs are less bloated.  Even the purple areas on her feet have receded some, though her toenails remain a charcoal gray and the pads of all of her toes are a lifeless purple-black. 

I spoke with the Trauma Surgeon for ten minutes.  He said that while he is surprised that we have made it to this day, he remains concerned that Bonnie is suffering from what he still terms multiple organ failure.  He seems to put less stock in the improved numbers than we would hope.  He said he expects that Bonnie's toes will suffer a "dry gangrene" in a few days.   While he could not say which organ or underlying risk factor was the greatest threat, he is concerned that Bonnie's neurological function still has not improved.   The trauma specialist says when trauma patients have the tubes removed from their mouth, and replaced with a tube in their trachea, that he normally sees "crisper neurological function".  He says that the last anesthetic, Bonnie was given for her Tracheotomy, wears off quickly especially with a 24/7 dialysis. 

Bonnie's daughter suggests that the trauma specialist is doing his job by keeping us advised of the worst case.   So long as Bonnie's numbers are improving Jennifer holds that Bonnie is getting better.  Jennifer talked with Bonnie about the completion of the remodel at her house and that they gave Lucas, her 3 year old, a full drum set for his birthday and that he and Abi are playing them really loud.  Jennifer kept asking Bonnie to open her eyes and Bonnie did so for a bit.  Jennifer says Bonnie did respond by squeezing her hand.  Bonnie will open her eyes for me a bit, but she prefers to rest and sleep.

I keep myself sane by doing everything I can to keep Bonnie's body in the best condition possible in the event she recovers, while preparing for a less joyous outcome.  We ask for specialists to attend to Bonnie the moment we see an issue.  It can take 24 hours or more to get a specialist involved. Today we saw the vascular surgeon we asked for yesterday.  He confirmed the trauma specialist's assessment that Bonnie may well have to have her toes (or feet) removed to prevent a runaway infection.  He did not know if Bonnie could withstand such a surgery today, this is an assessment for trauma surgeon to make.  In any event, we have to wait a day or two, to see the line of demarcation.  We hope that Bonnie's toes will miraculously spring back as her circulation improves and her kidney function improves tonight and tomorrow.   

I had a mouth specialist inspect Bonnie's mouth today to map the issues created by her week with a tube in her mouth when we were not able treat her GvHD mouth sores.  He found three areas that need attention but that he was happy to report that her mouth was in better condition than he anticipated.  Our nurse today treated Bonnie's mouth with great patience and care, getting Bonnie to cooperate by opening her mouth to clean and then coat the sores inside her cheeks and roof of her mouth with a sticky jell combo of anti-immune, antiseptic and pain-killing drugs.  Bonnie's lips show significant improvement.  

The trauma specialist is having Bonnie off of the 24/7 dialysis machine this evening so we can see what her kidney function and liver numbers are without aid.   The air flow into Bonnie's breathing tube has been turned down gradually so she is breathing more and more on her own, but she can not do so without assistance yet.  The trauma surgeon has ordered pictures of Bonnie's skull and brain so we can see if there are any changes, or issues that would be causing her neurological function to be less than crisp.  It will be good to see if the blood on her brain has been reabsorbed. 

As for Bonnie being foggy, Jennifer points to the morphine that Bonnie must have on board to keep her comfortable enough to deal with the feeding tube in her nose, the breathing tube in her trachea, the tube in her chest to keep her right lung inflated, the tube in her urethra to siphon off her urine, the tubes in her bowels to remove the liquid waste from her digestive tract, the central port in her chest to infuse blood products, the perpherially inserted line to administer fluids and minerals, the oxygen sensor inserted in her finger, and the dialysis port inserted in the vein in her thigh.  

Jennifer remains strong, though this the high season in the cycle of her work life.  She is also dealing with the completion of the 7 month building project to add a couple of bedrooms to their house.  Our POD is arriving at her house on Thursday with furniture, corner tables and lamps and an oriental carpet for her living room and a queen size bed.   Jennifer has to manage the move of her sons to their new bedrooms.  She is also hosting her 3 year old son's birthday party at her home THIS weekend.   Jennifer is managing it all amazingly well.  Oh and we had to consider whether we should re-institute the "Do Not Resucitate" orders for her Mom.  Jennifer called her brother Ron before going to pickup her kids and take them to Zac's last machine-pitch baseball game of the season. 

Being able to manage all of this and be a source of strength for me, sounds like Bonnie's daughter, doesn't it?  

I am learning over and over again that the source of suffering is attachment.

It makes me wish I had done my Tibetan Buddhist meditations with greater rigor and regularity. 

I am taking solace in the prayers of our friends and that I am doing all I can do.   I am coming to accept that there are many, even critical things that I simply can not control or even influence. 

I give thanks for life and the love of our friends. 

If you were to know yourselves as you show up for me and Bonnie... you might not recognize the light YOU are. 

And now to sleep to face what tomorrow brings. 

/D for BanD 

Day 11 - Bonnie still in Critical Condition - but we connected tonight.

I am too tired to do much beyond the barest briefing tonight.  Bonnie's numbers continue to improve.  They took her off of the dialysis circa noon and took Bonnie for a skull and brain scan.  It showed that Bonnie's brain hemorrhage is being re-absorbed, though slowly.  Bonnie was more alert today, and able to respond to Jennifer.

Tonight I was able to connect with Bonnie.  I asked her who loves her? and she opened her eyes and looked at me and recognized me.  I asked her if she was thirsty and if I could wet her tongue.  She opened her mouth and I was able to sponge her tongue with water and put on a lip creme.  Bonnie seemed to like the care.  I asked her if she was in pain.  She nodded.  I asked if she wanted some morphine.  She nodded.  Our amazing nurse got Bonnie her pain medicine. 

I left Bonnie with her iPod playing her music.  I went to see the grandboys and their new bedrooms.  They are so cute.  Daddy and the boys and I went to dinner at Buffalo Wild Wings and we talked about day their parents got married.  Zac was really interested in what happened that day.  We are going to have to break out the wedding video. 

I got to talk with some of our amazing friends tonight and my daughter.  We are sooooooo blessed by the web of love and prayers that hold us. 

I am pretty clear that Bonnie does better as more people think of her lovingly. 

To sleep.  /Daniel for BanD.

Day 12 - Critical Condition - Right Lung again - Mostly unconscious

I got news that my mother's skin cancer operation is infected and she is in the hospital.  You may remember I went to Chicago to take care of her to see if I could ward off this eventuality. 

I dawdled and drove listlessly to the Wilmington Hospital.  I saw the Trauma surgeon who told me Bonnie's right lung was slowly collapsing again.  He needed approval to replace the previous tube in Bonnie's chest with a new one to apply suction to her lung to cause it to re-inflate properly.   They were to do this late this afternoon.

Bonnie opened her eyes a bit when I kissed her forehead.  But she preferred to remain quiet and mostly unconscious.  Bonnie's "numbers" remain good.  She is now able to maintain her body temperature without a hot air tube blanket and she is off of dialysis.  She cooperates with her nurses.  I touched her face and asked if she wanted water for her tongue.  She barely nodded no.  She seems to simply want to rest. 

The Trauma surgeon says it will be weeks and weeks before Bonnie is better, and that the only things that happen quickly in this setting are "not good".  I said wincingly, "Okay, then I pray for slow progress". 

I feel emotionally exhausted.   The thing I am least suited for is a slooooowwww waiting game.  I kissed Bonnie's familiar forehead goodbye.  I drove home and went to sleep.

In the 22 years I have known Bonnie, this is the longest I have gone without conversing with her.  I miss her smarts and her grace. 

/D for BanD

Day 13 - Critical Condition - Bonnie a bit more alert - mouths "I love you"

Jennifer called this morning to tell me that Bonnie was more alert.  Apparently Bonnie listened to Jennifer's account of Zac's baseball game and how the house and furniture are coming together and kept her eyes open and raised her eyebrows appropriately.  Jennifer says Bonnie seems to have pouted when Jen told her of the kid's costumes.  Jen promised to bring pictures of the kids in their costumes. 

By the time I got to the hospital circa 11 AM Bonnie was tired from her morning of being alert.  She did open her eyes for me and when I told her I loved her, she seemed to mouth "I love you" back.  She closed her eyes and went back to sleep.  After a while I kissed her goodbye so I could go to vote before the rush. 

I spoke with my psychiatrist and confessed to being simply overcome with sadness at how Bonnie looks and to experiencing emotional fatigue.  He pointed to the past 3 years of emergencies and ups and downs and the added concern about my mother.  He said I simply have to take time off, and get rest and massage. 

The bottom of Bonnie's toes are black and her toenails are dark charcoal gray.  I fear she will lose her toes.  For the first time as I look at her in the bed I have the sense that she is suffering.  I do not know what to do to help her.  My head hurts, my heart hurts. 

I have to go vote.   Thank you for your love and support and your prayers for our bonnie Bonnie.

/D for BanD