Bonnie Recovery

Day 14 - Critical Condition - Bonnie responds to news of the Grandkids.

Thank you for your concern for me.  I slept for 14 hours.  I awakened and cleaned up the house.   For the first time in 2 weeks I looked out and saw the ocean.  I felt better. 

I drove to see Bonnie.  She was awake.  The whites of her eyes are very yellow but she followed my story of the grandkids and Lucas's drums and how Abi makes lots of noise on the drums.  She raised her eyebrows and widened her eyes to show that she was following the story of how Lucas's room has the bunk bed in it and the furniture and carpets are now in Jennifer's living room.  I told her that Zac's room has a red wall and a blue wall for Red Sox colors and she wrinkled her brow. 

I told her that she was doing very well at healing her wounds from her fall.  I told her that the doctors took pictures of her skull and brain and that she did not have any brain damage and she could heal and be a GrandBee.  She made her lips move a bit like a smile.  I asked her if she wanted to come home and live at the beach with me.  She did her almost smile trick again.  I told her how much I loved her and how much better it was being able to talk with her like this.  She looked me deeply in the eyes, as if with sympathy for my suffering. 

Bonnie gurgles and coughs as she has fluid in her lungs.  The nurse can not do much about it.  The nurse clears the trach tube, but the fluid in Bonnie's lungs continues to gurgle.  I think Bonnie is suffering as she tries to get comfortable and deals with the choking fluids.   I washed her mouth a sponge but her tongue and the roof of her mouth are white and have sores.  I think she may be developing Thrush in addition to the GvHD sores in her mouth.  It was nice to be able to give Bonnie some water on her tongue and to soothe her forehead.  It is comforting to me to comfort her. 

I went to Lucas's birthday party to take some pictures for Bonnie.  It was nice to see the grandkids running around. 

People at the birthday party asked how Bonnie was.  I said truthfully that she was not good.  There was palpable resistance to this answer.  People looked at me.   They did not like my answer.  I was challenged, what did I mean that she is not good.  I responded plainly, Bonnie is suffering.  This was an even less acceptable answer.  Probably not a good birthday party subject, but I did not get to choose the subject. 

People at the party told me that Bonnie is doing better.  She was off of dialysis.   Yes, and she is far from doing well.  A couple of people responded as if I needed sympathy.  One person said over and over how hard it must be having to make the decisions we are facing.  I tried to point out that there are NO decisions left to be made.  It is not as if we can decide something that can reduce Bonnie's suffering.  There is no off switch. 

Bonnie has opted to live and we have followed her directives.  Bonnie has a chance to survive, though that still remains statistically remote.  If Bonnie survives it appears that she will lose all of her toes and possibly a digit or two of her fingers.  Bonnie may have to lose more of her feet than just her toes.  I wince.  I am going to have to tell her in the next few days, assuming that Bonnie does not already see her dead, black toes and know. 

It was odd.  I remained calm under the questioning of my observations that Bonnie is suffering, but I refused to lie.  People simply did not want to hear what was really happening.  They wanted to be cheerful.  One countered  that they saw me at the hospital, sleeping.  Uhuhuh, and your point is....?  Amazing how people are reflexively stuck on having the news being good and all of the children being above average. 

The facts are that Bonnie is gurgling and coughing fluid in her lungs, she has a tracheotomy, and tubes blowing air into her lungs, she can not talk, she can not smile, she has a tube in her nose down into her stomach, she has a tube in her urethra, tubes in her rectum, she has tubes in a central vein in her chest, she has tubes in her arms, she has tubes in her fingers, she has a tube in her chest to keep her lung inflated.  She has not been able to turn off of her back for 14 days.  She can not eat, or bathe or read or watch TV.  Other than that, Bonnie is just fine.  

Note to folks who inquire about someone in critical condition.  If you do not want a real answer, do not ask the question.  When someone who has just been there speaks; listen, comprehend and before you respond, consider if the speaker truly needs to be "cheered up" or is simply answering the question you asked.  

Personally, I do not need or want cheer-leading. 

Sincere concern and prayers are wonderful.  Warm regard for Bonnie and me and our family are most welcome.  False hope, forced cheer, not so much.

I am praying that Bonnie will come through her suffering and enjoy her life going forward ... or that Bonnie will be able to experience a peaceful end.

/D for BanD

Day 15 - Critical Condition - Bonnie aims to recover - I have my marching orders.

I slept in and appreciated the added hour due to Daylight Savings Time.  I continue to try to put the house into a bit better order.  There are still many boxes to unpack from the first POD, and then there are the suitcases from our trip to Boston.  It does not feel very homey now.  I make a tiny bit of progress every day.  

I found more laundry in one of Bonnie's suitcases from our last trip to the Dana Farber Cancer Institute and Mary's ordination.  I was reluctant to wash Bonnie's clothes as I did not want to remove the last traces of her.  Crazy stuff. 

Jennifer was coming out of Bonnie's room at the Surgical Trauma Intensive Care Unit as I was coming in.  Jen reported that she had a great visit with Mom and that she was following the description of Lucas' birthday party and all of the goings-on at the Jennifer's house.  Jen said that Bonnie was not gurgling or suffering in any noticeable way.  Hurray.

Bonnie was alert when I came in and she looked at me long and hard.  Her face and eyes are rather expressionless unless she moves to widen her eyes or wrinkle her forehead or slowly closes her eyes to telegraph her meaning.  I told that I was cleaning up the house and paying the bills.  I told her she was doing well as she was improving on every organ and every count.  She was surprising yet another set of doctors.  She relaxed her face somehow to show she was following. 

I told her I loved her and that I was looking forward to having her in our bed, and having Abigail coming and saying "read me a book Grandbee".  This received as much expression as her face allows. 

Sometime during our three hour visit, I asked Bonnie "Is this still worth the fight?"  She understood perfectly and she looked at me carefully and then slowly nodded once and closed her eyes slowly and then opened them slowly - to signal Yes.  "Good" I said, "I know what to do.  I missed you and I am looking forward to having you come home."   We are now at peace with our situation. 

We just hung out together in the room.  Bonnie's trach tube needed to be adjusted several times, but other than that she seemed relatively comfortable. 

I asked the nurses what will happen with her toes and they said that they will continue to simply de-mark the living from the dead tissue and if we are fortunate that the dead tissue and toes will simply fall off, and not require surgery.  While I continue to worry about Bonnie's future mobility and the risks of infection, I get the idea from the nurses that this is pretty much par for the course and that people just get through it.  Patience.  This is going to take patience and some vigilance.

Tomorrow morning Jennifer and I are going to see if we can get a current briefing from Bonnie's doctors regarding the best case and worst case scenarios and what we can do to help Bonnie now.  I want to help the nurse wash Bonnie so I can see any and all wounds and sores so we can stay on top of any potential infections. 

I am more hopeful than I have been in 15 days.  I see my attachment to Bonnie not suffering causes me suffering.  I just do not yet know how to sit still and be with Bonnie when things are declining or she is suffering. 

There is so much to learn for us if we are to be truly helpful to our respective cohorts of patients and caregivers.   I still hope that we will be able to finish our book, "How to be a Successful Patient: Facing Chronic and Critical Illnesses."  If Bonnie would stop doing more first-person ethnographic research we would be done sooner. 

/Daniel for BanD

Day 16 - Critical Condtion - Bonnie co-operating, starts physical therapy again.

Tough.  Mentally tough.  Spiritually tough.  Biologically tough.  Tough.  I had no idea what I was getting into when I said "I do" and married this Texan. 

Bonnie and Jennifer were talking when I came in this morning.  Well, Bonnie can not actually talk, but she was certainly holding her side of the conversation.  Bonnie is increasingly clear using her animated facial expressions. 

I was able to work with her nurses to help roll Bonnie off of her back and clean her skin and change her bedding.  Bonnie has a significant amount of jaundice to her skin, particularly on her back and legs where the blood settles and is not able to circulate freely.  The jaundice in her eyes is clearing nicely.  I found only one newly developing skin abrasion.  We cleaned it and covered it with Bacetracin with zinc and a gauze pad.  We are so fortunate that Bonnie has not developed bedsores.  They could literally spell the end as they so easily become infected. 

I was able to gently clean Bonnie's lips and face of all of the dried blood and dress her lips with a creme.  Then Bonnie co-operated with me to get her tongue and mouth sores clean.   Bonnie opened her mouth and moved her tongue around so I could coat her with the antibiotic and cortisone paste to dress the GvHD sores on her tongue, the roof of her mouth and inside her cheek.  It felt so good to have her being so alert and cooperative.  We are back into our dance of long-term care.  It was great of the nurses to let us do it ourselves.  It is literally a dance for us, with many of the same sensations of pleasure. 

The nurses dressed her wounds around the tube into her lung cavity and some skin abrasions on her right side.  I think we will be able to stay ahead of the skin issues.  Bonnie's wounds are beginning to heal instead of simply festering.  It is so good to see her skin healing. 

Bonnie's dietitian came in and we discussed the formula they are feeding Bonnie.  They are adding more protein as they ran out of the formula they were using.  Bonnie's gut is working really well again, which is bringing back her natural immune system.  How fortunate we are. 

Bonnie's new physical therapist came in and we began to work on Bonnie's arms and legs and shoulders and hands and feet.  The good news is that Bonnie was able to assist in the movement of her arms and legs in every direction.  Sometimes Bonnie was only able to produce a few ounces of strength and sometimes we had to move her leg or arm for her to get the idea of the movement needed.  At first it was tiring, and Bonnie was not fully engaged, but soon Bonnie put her heart into it. 

After Bonnie rested from her exertions, she was remarkably brighter.  I do not know if this was due to increased blood circulation or due to relief from seeing that she could move her limbs again.  In any event, Bonnie was remarkably more alive. 

I waited until 1PM for the Trauma Surgeon to do rounds, I but could not wait any longer.  I had to drive to Bank of America to see what happened to a $90,000 bank wire from TIAA CREF.  For an hour BofA could not find our funds, even with a letter from BofA with a notification of the receipt of the funds, bank wire number and account numbers etc.   While pushing to find our money, the Trauma Surgeon called me to give me the update on Bonnie. 

I switched context and moved to a quiet location to see if I could get the best and worst case scenarios for Bonnie and a timeline.  I figured I needed to tell Bonnie what to expect. 

The surgeon continues to be surprised by how well Bonnie is coming back.  Clinically, Bonnie is too high in sodium and she is still recovering from a brain injury.   And there are the after effects of her kidney failure, liver failure and heart failure, but she is doing better on all of these counts.  Bonnie is still on breathing support, but this has been dialed down to a very low amount of oxygen and humidity and positive pressure.  He said that if all goes well, Bonnie will need another 3 weeks or so to be able to move from the hospital to a physical rehabilitation facility.  Bonnie has almost no leg or arm muscles again and will need to learn to sit up, eat, stand up, walk, bathe, climb stairs etc. 

Finally BofA found the funds.  Then I had to drive to AT&T and Time Warner to pay our cellphone bill and our internet access bill.  I am still not able to make Bonnie's laptop work for me to gain access to our bank account and to pay our bills electronically.  Arrrrggghhh.  

With some of our essential bills paid, I went back to the hospital.  Jennifer and Bonnie were "talking" again.  Jennifer looks so much happier as her Mom is coming back to life.  The docs have approved that Bonnie can be moved to a "step down unit".  Bonnie is still classified as being in Critical Condition, but she does not need to be in Surgical Trauma Intensive Care Unit 1.  On the other hand, there are no beds in the step down unit yet, even for Jennifer's mom. 

I was able to brief Bonnie on how she was doing according to the Trauma Surgeon, and how long she was likely to have to stay in the hospital.  

Bonnie wanted to know how long it would be before she could talk.  We are working on this with the doctors.  She was not delighted with the idea that it could be a couple of months before she gets home.  I promised that Jennifer and I would work her limbs to increase her physical rehabilitation as quickly as her physical therapist trains us to do so. 

Bonnie was a bit happier with this answer.  She kept trying to talk which made her heart run up and ring the heart monitor alarms.  Jennifer wanted me to not get Bonnie excited so she could go pick up the kids without having Bonnie's heart monitor ringing the 150 beats per minute alarm.  Nice to be amused by a heart alarm. 

I am going to have to figure out how to get it so Bonnie can communicate with sufficient specificity, without speaking.  She does not seem to be strong enough to write, though we will try that tomorrow.  Maybe a Oujii board will work.  Observing how Bonnie writes her sermons, this may be an frictionless way for Bonnie to express her Self. 

It is good to have Bonnie back in the world playing with us, even if she can not express herself as clearly as she now wants --- oh, and even when she makes her heart monitor ring as she moves to talk. 

Thank you for your prayers and kind thoughts.  We are not out of the woods yet, but we are headed in the right direction. 

/D for BanD

Day 17 - Critical Condition - Bonnie breathing on her own, in her own room.

The doctors turned Bonnie's heart regulating medications back up yesterday after we had too much fun and raised her heart rate when Bonnie tried to talk.  A heart rate of 150 is just her training rate.  I guess the doctors do not share our sense of humor.  Then the Doctors had to wean Bonnie back down off of some of this heart regulating medication in order to allow her to move to a room in the "step down unit". 

By 3:30 PM yesterday the breathing support specialist nurse removed the concentric tube down into Bonnie's trach tube, and was testing Bonnie's ability to breath with no assistance.  It took Bonnie a bit to adjust.  There was an increase in the mucous that was in her airways.  Bonnie breathing gurgled and she needed to cough. 

The breathing support specialist came in to suck the mucous out through trach vent in Bonnie's neck.  This is a delicate operation as it can trigger a gag reflex.  Bonnie was very good as she worked to stay calm when she was gurgling mucous and when they were suctioning her.  Bonnie adjusted to the new sensations of breathing without the tube she has had protecting her airway from collapsing for the last two weeks. 

By 6 PM Bonnie's nurse was giving Bonnie's full report to the nurse who would be taking care of Bonnie in the step down unit on the 5th floor.  It took Bonnie's nurse over 30 minutes to disconnect all of the hoses, and sensors from the walls in Bonnie's room and connect them to tanks, bags and heart monitors attached to Bonnie's bed.   It took three people to push Bonnie in her bed and to drag along all of the equipment still attached to Bonnie. 

 By 8:30 PM Bonnie was in her new room on the fifth floor.   A medical technician came and worked for 20 minutes to reconnect all of the sensor blades and tubes into the monitors and taps in the walls.  The nurses suctioned Bonnie's trach tube and turned her on her side so they could bathe her and dress her wounds and check that everything was properly connected. 

Bonnie was alert and following everything that was being done and said, and very tolerant and cooperative and weary from a long day.  Finally we were able to focus a bit on the election results.  Bonnie was happy as the results rolled in.   I turned off the TV and left when Bonnie was asleep.  I am sure she was awakened every hour or two by the nurses who have to check this and that.   It will be fun to see what she thinks of the election results now that they are in. 

/D for BanD

Day 18 - Critical Condtion - Breathing easier, wounds healing, Zac visits

I am tired so this will be a quick post.

Bonnie is doing a bit better each day.  She is breathing with greater ease through her trach collar and she has far less phlegm.  Bonnie did not wheeze or gurgle while I was with her tonight. 

I received a call in the middle of the day from a nurse asking if they had permission to remove the huge Central Line in Bonnie's upper chest area.  They wanted to replace it with a Peripherally Inserted Catheter, a "PIC line".  This is good progress and I gave my consent.   

In the early afternoon Jennifer and Bonnie's eldest grandson, Zachary arrived for a visit.  Since Bonnie is not speaking, or writing yet, when she declined to go to surgery, this caused the nurses and doctors great concern.  

They interpreted this as Bonnie refusing further treatment.  They told Jennifer who was then worried and upset.  As I listened to the story by telephone from Jennifer I reminded her that this was Bonnie we were dealing with and Bonnie would do things in her order and in her time.  I reasoned that since the Central Line was not infected as it had been twice in Boston and once at Stanford, this could wait and I promised that I would negotiate with Bonnie. 

Suddenly I saw the light.   Bonnie was simply declining the surgery until she finished her visit with Zachary.  Anyone who knows Bonnie, knows that given the choice of surgery between 2 - 4 PM or a visit with her grandson, Bonnie is going to spend her time with Zac.    

Of course, it went exactly Bonnie's way.  

I got another voicemail message telling me that Traumatic Surgeon had to come up to explain in the most serious tone how Bonnie HAD to have the Central Line removed.  Apparently Bonnie agreed that would be fine AFTER she had visited with Zachary.  

I am sorry that Jen had to see how a day in the hospital can go when the seemingly irresistible force of Allopathic Medical Authority meets the unmovable spirit of Dr. Bonnie Johnson.  But inside I was just laughing.  It is nice when other people experience what I deal with.  I love it when Bonnie's children see yet again the nature of their mother and the woman I married.  Bonnie is wonderful instance of the velvet glove concealing an iron fist. 

When I arrived at 5 PM or so, I helped the nurses bathe Bonnie.  I love to touch her skin.  The nurses tried to protect her modesty.  I said to them that they were 6 years late arriving on "my shift", but they were welcome to help me.  It produced the desired sudden reality adjustment.  They each got to tell me how many years they had been nurses etc.  By the time we were done, we were laughing and teasing with each other.  Best of all, Bonnie's wounds are healing some more.  I hope we can have the tube into her chest to keep her right lung inflated, removed soon.  It is pretty ugly and awkward.

The jaundice on her skin remains where her legs, hips and back contact the bed.  Happily, the terry cloth wash cloth with warm water did help get her circulation going and her skin turned pink in several areas.  It is so comforting to see her body and beautiful skin coming back to function bit by bit. 

I was very happy to see Bonnie all clean and to just hang out with her, though we did not "talk" much.  Bonnie was pretty well exhausted by the nurses coming in every hour or two during the night.  And her morning visit with Jennifer and the stream of doctors and nurses, then her afternoon visit with Zachary and Jennifer.

When Bonnie was nodding off, I left so she could have 3 hours of sleep before her midnight insulin shots.  Just one of the "side effects" of the cortisone Bonnie has to take, is a diabetic condition that goes on for weeks or months.  Bonnie has to have insulin tests and injections several times a day.  This is such a "minor" issue compared to the rest of her health issues, it has not made it into my daily reports for almost two weeks.  Diabetes is a full blown disease for most folks, but it is a minor side effect in the landscape of Bonnie's health. 

The Good News is that Bonnie is getting a little bit better every day.  We have a new President who brings hope to the US and much of the rest of the World.   And my daughter Debrah's experiments for her doctoral thesis at Harvard Med are finally working as she speculated they would some 3 years ago  when she started down her line of research on a particular virus. 

These are  huge steps forward in all of our lives.  I will remember November 4th as a day when so many of our families prayers and postulates have come to fruition.

Thanks to all here who have encouraged us to keep the faith and keep walking our paths. 

/D for BanD

Day 19 - Critical Condition - Bonnie making her needs and wants clear !

I finished yesterday's post at 4:30 AM.  At 5 AM I left a message on Jennifer's voicemail that I would see her in the afternoon. 

At 9:20 AM I got a call from Jennifer saying Bonnie was asking for "Daniel, I want my husband here now".   I told Jennifer I would come immediately.  She put me on speakerphone and I told Bonnie my feet were on the ground and I would brush my teeth and leave immediately. 

It is a 90 minute trip.  I arrived before 11 AM and Bonnie was sitting up in the lounge chair in the room.  They had used a "cherry picker" with a canvas sling to pick her up out of her bed and deposit Bonnie into the chair.  Bonnie was happy to see me and I was delighted to see her.  She had been bathed and her hair was washed and she looked even more alert.  We sat and I told her of the events of the day and what Obama was doing. 

I told her what I was learning this time living through the probability that she was going to die.  I had to face the fact she was likely to be "going home" and that I would have to live without her.  I told her that I had noticed that when I am no longer the observer of myself as an actor/observer in everyday life, I begin to suffer.  When I can observe myself acting and have the sense that there are many paths open at every moment; when I see the cosmically and humorous dance - that we have so much latitude, then I am free - even when present time is full of physical or emotional pain.  She nodded that she "got it". 

I asked her if she was learning all sorts of new stuff.  She was thoughtful and nodded, yes, she was learning new stuff.  I told her I could not wait for her to be able to tell me or write down what she was learning. 

Then the Occupational Therapist came in to do an assessment of Bonnie's capabilities.  She wanted to know about how our house was setup and was impressed that we had taken such care to make it handicapped accessible in the last remodel.  She was surprised that I had already begun to research how to install an elevator to get Bonnie from the ground/sea level up to the first floor which is up on 12 foot high piers. 

She tested Bonnie's ability to move and squeeze both hands and to move her right arm.  Bonnie's left arm is much weaker and her left wrist and hand is still very swollen, and limited in movement.  Bonnie had little ability to move her legs, but she could move her feet.  When we looked at Bonnie's feet, and mummified toes, I lightly told Bonnie that she was going to lose some of her toes.  I pointed out that it looked like she would be able to keep some portion of some of her toes and that she would be able to walk.  I explained that she would have to re-learn how to balance.  Bonnie nodded that she understood and shrugged her shoulders to show that there was nothing we could do but wait and see.

The therapist asked Bonnie what happened, did she fall?  Bonnie shook her head, No.  I asked Bonnie what she thought had happened.  She got a blank look on her face.  I reminded her that she had fallen in the LA airport several weeks ago and bruised her chin.  And this was different.  Did she remember what happened?  She thought a bit and then shrugged her shoulders.  I asked if she had any memory of what happened at all?  She slowly shook her head,  No. 

I asked her if it would be okay with her if I told the Occupational Therapist what I had learned from the evidence I found in the house.  I described the evidence and the fall and Bonnie's lucid telephone calls for help.  Bonnie seemed fascinated by the story. 

Can you imagine "waking up" in a Surgical Trauma Intensive Care Unit for 18 days and not knowing what happened or why you were confined to hospital bed bristling with tubes?  Truly Kafkaesque. 

Over the next few hours I began to understand the impact this all has had on our Bonnie. 

When the OT person left, Bonnie was very uncomfortable and I could not figure out what the issue was.  Of course she could not tell me.  I do not read lips and her lips are so bloody, sore and scabbed she can not form words well anyway.  We moved pillows and I fixed the elastic strap holding the moisturizing tube around her neck to her trach collar.  But still she wanted something else.  She made as if she was going to push up on the arms of the chair and I got that she wanted to be higher up in the chair.  Bingo.

I went to get the nurse and we pulled Bonnie up in the lounge chair using the "pull sheet" she was sitting on.  This helped for a bit.  Then Bonnie was asking for something and it took me a long time to figure it out.  Finally she leaned forward in the chair using her stomach muscles to sit up. 

She wanted me to hold her.  I stood up and awkwardly leaned over the chair and put her head to my chest and held her back and just kissed her head.  We stayed this way for some time.  I had to sit down as my back hurt.  Bonnie wanted me to hold her again.  I did so and I could feel her shaking and in grief.  I just held her and told her I love her.  We did htis several times.  When I sat down and looked at Bonnie, I saw that her face looked clearer; the right side of her face much more like Bonnie's natural expression.  Bonnie's grief produced a catharsis.  Since her Chronic Graft vs Host Disease has destroyed her tear glands ability to produce water, there were only traces of tears.  Bonnie looked like the earth looks after a soft spring rain. 

Then Bonnie was asking for something else.  I got that she was telling me that she loved me.  I asked if that was it.  She nodded yes.  But then she was saying something again.  I did not understand.  I tried to listen but she could not get air through her vocal cords.  I tried to have her type in PowerPoint but she could not manage to extend even one finger to do so. 

I said in frustration, that I wished we had a word chart.  She gestured toward a shelf.  I saw a word chart that said "I want... " and a long list of things.  And "I am ..." and another list.  I went down the list of "I am ..." and "anxious" was a partial hit.  She then mouthed a word that I finally parsed as "hungry".   I asked her nurse if we could increase the flow of the liquid formula in the feeding tube that goes down through Bonnie's nose.  She told us "No, the nutritionist had set it very exactly".  I told Bonnie there was nothing we could do to get her food.  I offered to bring some of the "Beautiful Cookbooks" from various countries tomorrow so we could look at great foods, countries and amazing recipes.  Bonnie did her tiniest  semi-smile. 

Then it was time to bring in the "cherry picker" and hoist Bonnie back out of the chair and back into a freshly made bed.  It took 3 people to do so.  When she was back in the bed she said she was hungry again.  The nurse said she could not have anything to eat for a while.  I asked Bonnie what she wanted to eat and that I would pretend to cook it for her.  She mouthed "Chicken Fried Steak".  So I did an elaborate play of breading a steak and heating a cast iron pan and searing the steak and serving it with mashed potatoes and brown gravy for the potatoes and white gravy over the chicken fried steak.  Bonnie played along.  I acted out cutting the first bite and was going to feed her when Zac and Jennifer and Scott walked in to visit.  Zac was amused by seeing adults so wrapped up in an elaborate game of make-believe.

We visited with the 3 Pollards for some time.  Zac is having some trouble seeing his GrandBe so visibly bruised and with tubes poking out of her throat etc.  We went for a trip to get some drinks.  When we were out of the room he asked why Bonnie could not eat.  I explained that the tube in her throat to help her breath would make it hard for her to swallow, but that she had a tube down her nose so she could have liquid nourishment.  He shuddered a bit.  Zac recovered his confront as we went back up in the elevator. 

While I was gone, Jennifer showed Bonnie the photo of her the first day after her fall.  She said that Bonnie was shocked that she looked so bad. 

After Zac, Jen and Scott left, Bonnie and I cuddled a bit.  It was so good to be with her today.  Then Bonnie mouthed "I want food".  I finally figured out that Bonnie did not understand that the tubes in her throat made it impossible for her to eat.  I told her why she could not eat for a while and she was very disappointed.  I told her we would work on getting the tubes out of her body ASAP. 

After a while she mouthed that she wanted to go home.  She expressed it with a kind of conviction and hope that I would somehow make it happen in a couple of hours, or a couple of days, worst case.

I promised that I would take her home as quickly as I could.  I told her that the milestones are to get rid of the tube in her chest to prevent her lung from collapsing again, and then to reduce the size of her trac tube and re-learn to breath through her nose and mouth with the trach tube covered with a cap.  And to learn to speak again. 

But most importantly, we had to work on her mobility and strength each day so she could get out of bed to get to a potty chair.  She got the milestones and I promised to work with her on all of this.  Earlier we had done some movement of her arms and hands and shoulders.  Bonnie is now much more engaged in cooperating with her movement exercises.  I have asked to have her start to get massage and cranial-sacral work to improve the communication in her body.  Her Qi Gong teacher is coming tomorrow to re-start that practice with Bonnie.

We watched The News Hour and Bonnie begain to fade.  When she was asleep I opened the door to leave.  She awakened and I kissed her goodbye and reminded her that Friday morning I had my telephone appointment with my Jungian analyst so I would be to the hospital around noon.   I asked if she understood.  She did.  We were reluctant to leave each other. 

Over and over I am amazed by Bonnie's ability to surf the waves of present time.

/Daniel for BanD

Day 20 - Step Down Unit - Bonnie's chest tube removed, and more with Life.

Bonnie was happy to see me arrive at 11:30 AM yesterday.  She had remembered that I had my Friday appointment with Louis.

She was sitting in her chair and full of facial expressions.  We "caught up".   She motioned for me to come close.  "Hug me." she says with her breath,  and no voice. 

We are working out how to hug.  Bonnie is tubed and tethered and sunk into the institutional Naugahyde recliner chair.  I kiss her forehead for a long time and then hold her head to my chest while I soothe her hair.  Mostly I massage her back.  She likes to have my hands up and down her back.  She is coming more and more alive.  She feels so much like our venerable black pine bonsai after we root-pruned and transplanted it into a better japanese pot.  It took the tree over 6 months before it did well in full sun. 

Bonnie wanted to be moved up higher in her chair - wrinkles in the canvas sling and slithering down on her tailbone hurts her.   Can you imagine not being able to adjust your self in your chair for hours on end?  I went to find the pull-sheet and I discovered that the tube going into her ribs was GONE.  She no longer a tube to keep her right lung inflated. 

Free at last, Thank God Almighty, Free at last. 

Somehow this seems like the last "hard" tube tethering Bonnie to a hospital wall.  All the rest of the tubes and monitors will peel-off in good time.  But that tube through her ribs was of different order of artifice.  

Every doctor and every specialist attending to Bonnie says,  "Bonnie is exceeding my expectations."   And all say that Bonnie still has a long way to go. 

Meanwhile Bonnie says "Take me home" three or four times a day.  

We should not forget that Ronald Regan was first an actor:  Bonnie was first a rhetorician, and always an effective speaker. 

Physically, Bonnie has already learned a trick to somehow make her vocal cords get enough air so she can make her most important three words heard.  "Take me home" she says out loud.  Somewhere Demosthenes is smiling. 

I parse Bonnie's new aria as part Request, and part Insistence.   So together Bonnie and I look at what is so now.  Then we agree on which milestones we must reach for Bonnie to come home and which we can do at the beach house. 

I hold her and promise we will go home as soon as humanly possible.  And I tell her that we can speed this up by exercising her swallow muscles and moving her legs and arms.   Then we do a short cycle of these exercises.  

The hugging and massaging feel best to her.  She is sad about her toes.   We look at her toes carefully, and agree that so long as she can walk, it does not matter how many toenails she has to paint.

Several people come in.  Dr. Hughes visited.  He is our much appreciated Surgical Trauma Intensive Care surgeon.  He has been leading Bonnie's care.  He said how he appreciates and applauds what he observes with Bonnie these days. 

We review some of where we have been, and the steps to full recuperation and rehabilitation.  These are intertwined but different disciplines.  We have good folks for each domain - Respiratory,  Occupational Therapy, Physical Therapy,  Advanced Mouth Care, Foot Surgery - who are all up to speed and attending to Bonnie. 

Dr. Hughes says again that Bonnie has "come through" due to something beyond what he and "critical care" could provide.  For our part, I thanked Dr. Hughes and team for providing Bonnie with the time and biological space to see what Life has in store.  We were complete.  And Dr. Hughes stays on for a bit. 

Bonnie says "Thank you" to Dr. Hughes.  He says again that appreciates her full expression of thanks.  Another wonderful moment. 

The door opens and the kaleidoscope of the hospital shifts again.  In comes Bonnie's Tracheotomy surgeon and her student MD who is following rounds.   The Trach Surgeon skillfully guides Bonnie through the removal of the stitches, deflating the balloon gasket, and removing the trach tube with a 30 degree twist of her wrist.  She then deftly inserts the new, smaller diameter tube into Bonnie's trach.  Bonnie does fine with the smaller tube.  She is breathes and clears the new phlegm released.  She breathes and gets her Oxygen saturation levels back up to  96 - 100.  

The surgeon uses the few minutes Bonnie needs to explore the new tube and recover her oxygen levels,  to go review and demonstrate the tube withdrawal procedure for her MD student.  She emphasizes the exact coordination of the tilt and withdrawal while executing a 30 degree twist of the wrist.  It is good to see how medical teaching goes on in our teaching hospitals. 

Then Bonnie's surgeon showed Bonnie how she might be able to talk.  She  covered Bonnie's new, svelte-tube opening with her gloved forefinger.   She told Bonnie to say her name.  "Bonnie" sounded in the room in a voice recognizable as Bonnie's.  Then I asked Bonnie to say her Grandson's names.  "Zac, Luc, Abigail, Jack".  Now we have to wait for the speech therapist to come to certify that Bonnie is speaking, funny huh? 

"Thank you" Bonnie says to the Surgeon, before she replaces the loose blue breathing tube over the Trach tube.  

The speech therapist / swallow assessment specialist will come tomorrow to begin working with Bonnie using a valve to allow Bonnie to speak more and more of the time.   The door opens and closes every few minutes and the scene changes.  Blood pressure, temperature, blood sugar tests and insulin shots, and blood draws for complete blood chemistry tests go on endlessly, along with more filling of the food formula infusion bags and emptying urine and fecal bags.  I have learned how to empty the condensation traps that fill up because they make a horrible high whistling sound unless they are fully drained at least 4 times a day.

Bonnie wanted me to hold her.  We keep her head against my chest.  I massage her back and neck.   We do this for a couple of hours.  Bonnie feels better and more alive.  Just before The News Hour, Bonnie says again me in full earnest to "Take me to the Beach".   We agree on the milestones and what she can do with me to go home sooner than later.  This is our dance now. 

Bonnie did not want me to leave.  So I agree.  I say, "This is Friday night.  Would you like to be my date tonight?"  I suggest we could go to her place and sleep together.  She says coyly this would be fine.   We hang out in Bonnie's hospital room by the familiar light and sounds of the infusion machines. 

I rounded up a pull-out armchair/bed that I had spied unused in another room.  It is a truly uncomfortable bed, by design.  Think about that. 

But it is good emotionally and spiritually for us to be together whenever Bonnie insists. 

/D for BanD

Day 21 - Recovery Unit - Bonnie speaks and sucks some ice chips

After 20 days of nearly impeccable health care, several nursing errors cropped up.  I awakened just before dawn to the sound of another nurse coming in and start to work on Bonnie's left arm with a syringe.  Something  seemed wrong. 

I asked the nurse what she was doing.  She said she was about to do a blood draw.  I pointed out that she did not have to stick Bonnie with another needle, you can get a blood draw through her PIC line.  She said Bonnie did not have a PIC line and anyway she could not draw the sample through a PIC line.  I said she had better check her orders.  She left the room and stood in the doorway and shouted to someone for clarification.  The response came back, "542 not 544".  The nurse closed the door and went away for a while.  Here they call patients by their room number rather than their name.  Go figure. 

The nurse returned a few minutes later, and said that Bonnie's blood draws had already been done and she left without another word. 

The nurse was in the wrong patient's room, and the nurse did not check Bonnie's wristband before doing a blood draw.  These are classic mistakes discussed in the Institute of Medicine's annual report entitled "Crossing the Quality Chasm: A New Health System for the 21st Century (2001)   

A later study shows "an average of 195,000 people in the USA died due to potentially preventable, in-hospital medical errors in each of the years 2000, 2001 and 2002".  Think this through.  More people die in hospitals due to medical errors every week in the US, than died in the 9/11 terrorist attacks on the World Trade Center and the Pentagon.  Deaths due to preventable medical errors are like seven 747s full of passengers crashing and burning every week. 

Oh, yeah, the nurse did not don and discard the disposable smock required to be worn in a room where a patient has tested positively for MRSA, a highly contagious staph infection that is currently circulating on Bonnie's floor.

I begin to reflecting on the nursing care we have recently seen in this room.  A nurse had nearly smacked Bonnie in the same cheekbone she broke with one of the steel arms of the cherry picker they use to lift Bonnie up out of her chair.  Had I not been there to grab the bar, Bonnie would have been hit in the head.  It is just dawn so I went back to sleep and find myself in my Post Traumatic Stress Disorder dreams.

By about noon the speech and swallow therapist had come in and worked with Bonnie with the valve that allowed her to speak for a minute.  Then  Bonnie's Oxygen saturation level went down.  The therapist gave Bonnie some more hints and she was able to wear it and speak for a couple of minutes.  Then her O2 levels went down.  On the third attempt Bonnie was able to speak and breath for 3 minutes.  It sounded like Bonnie's when she has a sore throat. 

Then we moved on to the swallow tests.  Bonnie did well swallowing a chip of ice.  She did not aspirate it.  Bonnie did well with the second chip of ice as well.  But the therapist assesses that Bonnie's swallow reflex / coordination of muscles is understandably sub par after 10 days of having a tube down her throat and 3 weeks of not swallowing a morsel of food or a drop of water.  Bonnie needs to practice. 

While the speech therapist was in the room Bonnie's infuser alarm started to ring.  Over the past 20 days the alarms on the infusers in Bonnie's rooms have been ringing on average, once or twice an hour.  This sound has been our constant companion throughout the years Bonnie has spent confined to a hospital room over the past 6 years.  If Pavlov were seeking a sound to trigger PTSD in any Bone Marrow Transplant patient or Caregiver he would have to go with the alarm on an infuser. 

I turned the alarm off and went and informed a nurse's aide that Bonnie's infuser alarm was ringing.  She looked up sourly and said someone would be in to fix it.  10 minutes later the alarm took it's self out of "silenced" mode and started ringing again.  I went out and informed a different nurses aide who was sitting at her desk that Bonnie's infuser alarm war ringing, again.  She looked up impatiently and said someone would be in to fix it. 

The infuser alarm took it's self out of "silenced" mode after 10 minutes AGAIN, and I went out and saw our reliable head nurse.  I reported that Bonnie's infuser alarms had been going off for 20 minutes.  I noted that this  was too long to leave an infuse alarm unattended to.  She agreed and fixed it immediately.  She explained that she had not been told of the issue.  I believe she went off to correct her juniors. 

Bonnie and I continued our hugging routine and one of the sour aide came in and looked at me standing up and holding Bonnie in the chair and asked "What are you doing?"  I explained I was hugging Bonnie, as she was a bit anxious and uncomfortable.  "Oh" she said, with a note of disapproval.   I went back to our conversation about Bonnie wanting to "Go to the Beach" now and her sadness over her toes.   We again concluded that so long as Bonnie could walk, we would be fine.  

A different infuser alarm went off and I had to go report it.  The sour nurse's aide came in and fixed it.  I sighed and lay across Bonnie's bed to talk with her in her chair.  The nurse snapped that I could not lay on the bed, those are the rules.

At Stanford University Hospital, in the Compromised Host Unit, when Bonnie's immune system was actually zero, I was encouraged to get into Bonnie's bed and to hold her to provide her comfort, particularly the night they overdosed her with Amphotericin which caused Bonnie to shudder and convulse and then for her kidneys to fail. 

I told the nurses aid that I needed to see someone in condition to permit me to lay on Bonnie's bed as she was going to need me to be here for weeks and weeks.  We went out to see the head nurse, who asked quizically "Are they in the bed together?"  "No, then it is alright."  The nurses aide literally pouted, and then said defiantly, "Does that mean I have to change her linen again".  I pointed out that there was one contour sheet over the air mattress and that I would happily change it. 

After a couple of hours in the industrial Naugahyde recliner Bonnie was so uncomfortable she wanted to go back to bed.  I went out to ask for the crane and nurses to help Bonnie back into bed.  The defiant nurse told me triumphantly, "You have to take off your yellow gown".  This gown is worn in the patient's room to try and control the MRSA outbreak going around on 5th floor of this hospital.   I did so and returned to the desk to ask for help to deal with Bonnie's discomfort.  For the second time, before I could utter a word,  the other nurses aide scolded me that I had to wash my hands before I could approach the desk.  I did and then I asked for help to raise Bonnie up out of her chair.  Sullen.  No response. 

I realized that I had not heard a promise or a response to my request to help get Bonnie lifted out of her chair.  I asked for a response.  One snapped, I said "Okay".  

I said, look I will keep your precautions, so long as your staff does, and your staff has gone in and out of Bonnie's room on several occasions without using the precautions posted on the door.  As an aside, I have it from a leading authority on MRSA and other hospital bugs, that staph bacteria does leap off of one's hands through the air and take up residence on a desk.

I quickly realized this was more than bad moods.  I asked the head nurse if I could see the supervisor of this unit when I returned.  The head nurse was fully on board and we set the appointment for 5PM. 

I asked Bonnie if I could go home and take a bath and get some fresh clothes and return later.  I noted that I was tired and annoyed and I did not want to wait around for people to bring in the lift.  Bonnie was fine. 

It is about a three hour round trip.  I left at 2PM and soon was home looking out a the ocean from a hot bath.   Oh how beautiful, and how lucky we are that Bonnie is going to be able to rehabilitate her self again and come home. 

Since I am not going to be able to be on time to meet with the unit supervisor, I call and speak with our reliable head nurse.  She is  forthcoming and appreciative that I have brought these matters to her attention.  She has written down my reports of medical mistakes and failure to heed infuser alarms.  She is looking forward to meeting with me and her supervisor on Monday at 3PM.  She thanks me for my help with Bonnie and says what an amazingly attentive and supportive family we are.  

Ten mintues later she calls me back to say that the bigger room that they wanted to put us in when Bonnie first was "graduated" to the 5th floor has opened up.  She is moving Bonnie to that room so we will have much more room for me to stay and work with Bonnie more comfortably.  I thank her and prepare to drive over to see Bonnie in her new room.    

Bonnie is asleep but very happy when I arrive.  She likes the new room and the space and quiet we have.  It appears we are now in a Recovery Unit, which I believe is another step down for the "STICU" or Surgical Trauma Intensive Care Unit.  I arrange the room and put out Bonnie's iPod and speakers and her favorite FM radio and her red leather Bible.  I make everything neat so all of our personal stuff is out of the nurses theater of operations.  I play music for Bonnie.  It is Saturday night, after all.  She is happy and she is tired. 

I can see that we are in a room we can use to get Bonnie much more able to come home.   I arrange the freshly laundered warm-fuzzy synthetic blanket Jennifer bought for Bonnie over her.  She said she was cold.  She looks snug and content in two minutes.  After a while I ask Bonnie if I can go home and sleep in a comfortable bed.  She says dreamily, Yes.  I kiss her and promise to see her in the morning. 

/Daniel for BanD

 

Days 22 and 23 - Stable Condtion - Re-dressing wounds - moving hands and arms

Thanks for your concern.  We are doing remarkably well these days.  Bonnie is making progress every day. 

Several people have written with concern about my health and peace of mind.  I am doing better than I have in many weeks.  After all, our Bonnie is better. 

While I have not yet taken time off to get a massage, this week I have been able to enjoy friends by phone or iChat.  It did my heart good to catch up with my daughter Debrah.  I love the news of her breakthrough on the experiments she needs to complete for her PhD at Harvard Med.  I listen with grandfather's ears to Debs account of Jackson's maturation and his increasing ability to deal with his parents impending divorce.  Our daughter Debrah has shown characteristic endurance, agility and love for her son throughout the last several years.  Bonnie and I love you Debrah. 

I speak with Margaret and other friends several times a week.  You may remember Margaret was our minister in Palo Alto.  She stayed with Bonnie the night of her nadir during her first bout with Leukemia at Stanford Hospital.  Margaret re-married us a year later in our home in Palo Alto.  We now wear rings engraved with the Song of Solomon in Hebrew.  Our rings  read "My beloved is mine, and I am his"

A couple of nights ago I spent a few hours with my friend Glenn Edens discussing everything from the state of Silicon Valley and Barack Obama's first moves, to Glenn's reminder of the Buddhist 8 Fold Path.  While screen sharing by iChat we took turns showing each other easy approaches to create Tera-bytes of RAID drives to store music, photos and past work.  Friends provide truly great distractions. 

I am now able to sleep through the night.  I awaken happy to get up and go to the hospital to be with Bonnie.  It is a joy to see Bonnie's face light up when I come in.  Helping Bonnie recover her core health is like a barn raising.  Today we are rehabilitating her core skills: breathing and swallowing and talking and raising her arms.  Tomorrow, we are going to begin to add work to increase her strength. 

On Sundays Blaze works as a Nursing teacher at for the UNC at Wilmington.  Two of her nursing students and I washed Bonnie and changed her linen.  This is a clever trick to accomplish when a patient can not get out of bed.  Blaze said how much she appreciates my watchfulness and skill.  Then she told her nursing students to learn from me and what I do to care for a patient.  Geez, I felt weird.  All I am doing is seeing to the life and body of my wife. 

We have to remember that at New Hanover Regional Medical Center Bonnie is a truly foreign patient;  most Doctors and nurses here have never seen, much less cared for a Bone Marrow Transplant patient with Chronic Graft vs. Host Disease and a purposefully compromised immune system. 

Bonnie clearly requires a higher degree of care than the 5th floor is staffed to provide.  Many simple medical procedures that were done around the clock in STICU have been dropped out on this floor.  As Dr. Hughes points out the ratio of patients to nurses is 2 to 1 in STICU, and more like 15 to 1 on the 5th floor.

There has been NO application of the prescribed ointment for the Chronic Graft vs. Host Disease sores in Bonnie's mouth since we moved to the 5th floor.  Nor has there been treatment for what appears to be a new case of Thrush in her mouth.  Nor has Bonnie's Extreme Dry Eye condition been treated since she came this floor.  Bonnie's mouth and eye conditions were so painful in the months before Bonnie's fall, Bonnie was taking some morphine every day to mute her pain.  These conditions were being treated around the clock in the STICU. 

Further I discovered that Bonnie's Prednisone had been dropped to 20 Mgs per day.  Bonnie has been asking her nurse 2 and 3 times a day to have her Prednisone dose increased to 80 Mgs every other day.   Lower doses of Prednisone have proved to predispose Bonnie to a new flare up of her Graft vs. Host Disease.  A flare-up at this time would be truly disastrous.

I have discussed this with nurses on this floor once or twice each shift Saturday and Sunday.  Each time I am told that they will make note of it.

Fortunately, Monday we have a nurse who in fact made note my list of 8 action items.   Our current nurse also sees that starting Monday, I request a progress report every two hours. 

Bonnie worked with her Physical Therapist for 30 minutes learning to raise her arms above her shoulders, making a fist, pulling each hand to her chest in a curling motion, flexing her wrist up and down etc.  Bonnie left side is much weaker than her right.  But once Bonnie "re-learned" the coordination of the motion she was more able to make her muscles fire.  Bonnie was exhausted by the 20 minutes of effort.  The PT specialist allowed me to do the last 5 repetitions of each motion with Bonnie so I am learning how to help Bonnie.  Bonnie has willowy-strength, but not oak-strength; Bonnie does not love to push repetitions in Nautilus fashion. 

I had to go to my scheduled appointment with the Supervisor of Nursing, and Bonnie's Case Manager and a Social Worker to discuss my reports of medical errors.  As I left Bonnie's room, the Tai Chi / Qi Gong teacher I requested for Bonnie came to visit for the second time.  I trust Bonnie did a bit of "grinding corn".  

My meeting with the hospital supervisors went very well. They appreciated my observations that Bonnie had received impeccable medical care in the STICU.  Next we took care to go through my report of the medical error by the lab technician, and the repeated lapses and resistance Bonnie received from the 2 nurse assistants during Saturday's day shift. 

Then we went through each item on my list of 8 medical issues needing attention, including Bonnie's mouth care, her eye care, and returning to the proper Prednisone dosages per the most recent prescription from Dr. Chao - head of Duke's Bone Marrow Transplant Clinic.  

We discussed the new evidence and need to use a wound dressings  composed of Opsite IV 3000  instead of Tegaderm.  Bonnie has an allergic reaction to Tegaderm, as repeatedly and carefully documented by Brigham and Womens Hospital.  Tegaderm is clearly listed as an allergy in the Continuity of Care documents we delivered the first day Bonnie was admitted to New Hanover Regional Medical Center. 

Finally, we discussed my long standing request that I get a copy of Bonnie's lab tests and her medications list, every day.  This is standard practice at Stanford, Brigham and Womens, and UNC-Chapel Hill Hopsitals   This was finally approved.  In deed, I was provided a complete copy of Bonnie's CBC and Chem panels and medications lists for the past 23 days the very moment I arrived back in Bonnie's room.  Happily Bonnie's numbers are almost completely normal and in proper range.  

But I was told I could NOT have a copy of Bonnie's patient record until Bonnie signed out of the hospital.  It never ceases to amaze me to observe the games that are played over the patient record.  Of course NHRMC has no legal standing to withhold Bonnie's patient record upon request.  Since I only need Bonnie's blood tests, chemistry panels and medications list to play my role of advocate, there is no need to push for Bonnie's complete patient record today.   

We moved to conclude our meeting.  They promised to file a medical error report and to deal with their staff issues.  They reviewed their notes and promised to address each of my 8 action items.  They said again how much they appreciated my concerns and my willingness to be so clear about what was needed.  During the entire interview they had interspersed questions about Bonnie's work and family and our relationship.  They were very good at the wide range domains they are responsible to care for.

Fortunately they said that they did not find me "abrasive".  Rather they truly got how full of intent I am.   Somewhere during the interview each of the three said they appreciated my focus and commitment to Bonnie's care. 

I said "Good, I am glad".  And with a smile added, "But here is fair warning.  I can be more than abrasive, I can be positively incendiary.  If I observe that I have light a fire to get Bonnie the medical attention she needs I will arrive with matches and an accelerant."   They burst into laughter.  A dam broke.   Each said something to the effect that they fully got my willingness to do whatever it took. 

We are now all working to find a way to get Bonnie into their Rehabilitation Facility, which requires that Bonnie has to be able to engage in 3 hours a day of rehab exercises.  It is clear to all that Bonnie is not nearly able to do this yet. 

At about 6:30 PM Dr. Hughes was making his rounds, after a day of Trauma Surgery.  I awakened Bonnie so she could participate.  We reviewed Bonnie's progress.  The Prednisone dosage was now corrected to 80 mgs every other day and 20 mgs on the "off day".  Bonnie's mouth care has been reordered, and the prescribed ointment "found" in a cabinet in Bonnie's room.  Bonnie's eye care has been re-ordered for once each night and a fresh tube of eye ointment was delivered. 

I showed him several of Bonnie's wounds to see if any further MD care was needed.  Dr. Hughes was pleased to see how much healing was occurring.  I showed him a wound from Tegaderm tape that was slow to heal.  I also pointed out the one wound dressing that had not been changed; the surgical incision into Bonnie's rib cage and lung cavity.  He had one of the two doctors traveling with him remove that bandage.  They inspected it and expressed satisfaction that the wound was healing without infection.  They discarded the nasty guaze and tape that held it in place. 

Somehow that puncture wound in Bonnie's ribs reminds me of the wound made by Roman spear into Jesus side on his cross.  Dr. Hughes ordered a simple 4"x4" gauze dressing for it.   I will see to the doctor's order for a wound nurse to follow up. 

Dr. Hughes said he is thinking about how quickly we can remove Bonnie's trach tube.  When I understood the issues, I told Bonnie about this loud enough for her to hear without her hearing aids.  I explained the risk and asked her if we had guessed her intent.  Bonnie nodded with vigor, indicating that she wants it out ASAP, even if it increases her risk to choke on mucous, and yes, even if this could be a fatal risk.  I told Dr. Hughes we trust him to make the call, as he knows our willingness to take reasonable risks when they promise to make it easier for Bonnie to get back on her feet. 

We looked at Bonnie's toes and were sort of amazed that she seems to be pushing the line of what is living and what is dead down every day.  Now it appears that she may be able to save some digits of almost every toe.  This is stunning as about 12 days ago we were discussing that Bonnie might need to have her feet amputated.  Dr. Hughes is smiling again and shaking his head over how well Bonnie is healing. 

We move to thinking about how to get Bonnie in condition to qualify for the Rehabilitation Facility.  I had Bonnie show him how she could flex her weakest muscle, her left wrist.  Amazingly she was able to flex her left wrist a bit on her own.  He smiled.  As he move to leave Bonnie opened her eyes and mouthed "Good bye, Thank You"  Dr. Hughes returned her thanks and left with a smile on his face.  

Bonnie says she wants me to stay the night again tonight.  We "watch" Monday night football, which means she sleeps heavily from her exertions of the day.   At 11 PM I kiss her and rub her and ask her again if I can go home to sleep.  She sort of smiles dreamily and nods that I can go home now.  I tell her I will see her tomorrow and she should sleep in her Jesus' arms.  She actually smiles this time.  First smile I have seen in 23 days.

/D for BanD

Days 24, 25 & 26 - Bonnie's UP and she exercising - in ALL domains

Bonnie has been sitting up in a chair 2 - 5 hours for the last week.  Bonnie now holds and moves her head with complete control and range of humorous expressions.  She makes funny faces when she is swinging in the canvas sling as moves from her bed to her chair. 

Bonnie is now without her tracheotomy tube and all hoses, and attached machines.  

Last night I turned off the hissing oxygen jet, and removed the humidity hoses and water condensation bag.  Suddenly, for the first time in weeks, there was an END to the incessant high-pitch WHISTLE.   

The stillness was a stunning and sudden relief.  

Bonnie's neck is now svelte with only a white cloth bandage covering the hole in her neck.  Her trachea and her neck will heal, over the next several days.  Bonnie can make herself heard and understood by touching a finger to her neck. 

Bonnie can now bring BOTH of her hands up toward her face.  She will probably be able to touch her own throat with her right hand by the end of today. 

Bonnie is alert, funny, and interested.  She even orchestrated staying up until 10 PM to see the whole Sarah Palin interview on Larry King.  She had interesting perspectives on Sarah's rhetoric and the communities that might find this compelling. 

Bonnie is full of love.  And she is coming to understand what "happened" to her.   Bonnie is FULLY cognizant of the milestones we must achieve to move to the next stage of care.  The next stage is Bonnie's full occupational and physical rehabilitation to return to being mother, GrandBe and spiritual director at her church, and my partner. 

Here is the "threshold" for graduation to the NHRMC's rehabilitation facility:  "The patient must be an engaged and active participant in their rehabilitation activities for 3 hours each day." 

Bonnie's current menu of rehabilitation activities are:  Being out of bed at least 2 hours a day,  Occupational / Physical therapy exercises, practice swallowing, making a fist and exercising her hands, wrists and arms in bed, Qi Gong physical and breathing exercises,  Cranial Sacral work, speaking out loud for a least an hour a day. 

Characteristically, Bonnie has exceeded the 3 hours a day threshold requirement to move on to Rehabilitation, for the last 6 days while still in Recovery.  We speculate that NHRMC will be comfortable moving Bonnie to the Coastal Rehabilitation Facility, which is in an adjacent building, in the next 5-7 days.  It has taken every hospital some time to grok what kind of patient Bonnie is...

Yesterday, Bonnie and I added weight bearing exercises for her legs.  We put 2 firm pillows under her feet so she could push and make her seat glide a bit with each pump of her legs.  They will bring Bonnie a low stool to improve this exercise today. 

Bonnie's energy waxes and wanes through out the day.   Bonnie has become masterful at taking 30 - 60 minute naps.  Bonnie is still awakened ever hour or two during the night in the Recovery Unit for vital signs or lab draws etc.

Bonnie's emotional, mental and spiritual health are each in good shape.  Three days ago I asked Bonnie what she was learning this time.  She was thoughtful for more than a few seconds and in three breaths Bonnie told me  told me "Calmness" "and" "Confidence". 

Revealing Bonnie's current range, she talked me through a complicated set of maneuvers to move money from one of our Schwab accounts into another of our Schwab accounts.  Then how to do a bank to bank transfer of funds from the correct Schwab account in to the right 1 of our 5 Bank of America accounts, saying the last four digits of each account from memory.   So much for Bonnie's mental "recovery". 

For her Spirit, Bonnie will be taking her deeply-loved communion every day now brought by her minister from St. Philips or by one of her chaplains at NHRMC.

Bonnie and I thank you for holding us in thoughts and prayers, and prayer equivalents ;-)     They continue to mean more than the world to us.

I am clear we would not be in such good shape today, were it not for you, our friends and family

/Daniel for BanD

Days 27, 28, 29 - Bonnie can touch her throat, and sheds another tube.

Bonnie continues to improve.  She has been doing her exercises in her bed and getting hoisted out of bed and into her chair for 2 - 3 hours everyday.  

Bonnie is getting stronger.  She still has significant congestion in her chest though she is happy to be done with the trach and breathing tubes.  She has to use a breathing machine that she sucks 10 times every hour to exercise her lungs.  Her lungs should clear up soon. 

In the meantime, I am disturbed when I sleep in her room listening to her gurgle and cough and being awakened every hour during the night for vital signs or insulin shots etc.  Imagine what the last 30 days have been for our  Bonnie.  For instance she has not been able to sleep or even lay on anything but her back for 30 days, and she still can not adjust herself in her bed. 

The tube in her bowels was causing her a great deal of pain, excoriating the inside of her rectum.  Bonnie needed morphine to deal with the pain last night and again today.  An amazingly cool nurse removed Bonnie's rectal tube today.  Hurray.  It is a relief for Bonnie to be able to use a bedpan. 

Bonnie can now touch her throat with each hand.  With the assistance of her Occupational and Physical Therapists, Bonnie was able to sit up and put her legs over the side of her bed.  She showed surprisingly good strength and balance.  Bonnie was able to lean over in the bed onto her right forearm and push herself back upright 8 times.   We are working on helping Bonnie get strong enough to get out of bed with some help so she can sit on a commode and shed her foley urinary catheter.  I will be working with Bonnie on the exercises prescribed by her OT / PT folks every day to supplement their occasional visits.

Now for the less than good report.  Within a few hours of Bonnie's admission to New Hanover Regional Medical Center, Jennifer provided a summary of Bonnie's concise Medical History from Dana Farber Cancer Institute / The Lance Armstrong Survivor Clinic.  She also provided Bonnie's 5 page summary to the Duke Bone Marrow Clinic.  These documents clearly listed Bonnie's allergy to Penicillin, Sulfa drugs and Tegaderm tape on the top page.  I noticed that New Hanover Regional Medical Center had used Tegaderm tape on Bonnie's central line, and on both of her shoulders, on her elbow on Bonnie skin and several other sites. 

Starting on Bonnie's 3rd or 4th day in STICU I pointed out Bonnie's documented Tegaderm allergy to each doctor and nurse attending to Bonnie.  I asked them to order Opsite IV 3000, which is a Tegaderm alternative to which Bonnie has prove NOT allergic. 

The staff in STICU said they would order Opsite 3000.  When the dressings did not show up after several days,  I went to a the best local medical supply store and ordered a $60 package of Opsite IV 3000.  The next day they received an Opsite dressing but not Opsite 3000.  They said that none of their distributors had Opsite 3000.

Had I been fully with it, I would have ordered the Opsite 3000 using my iPhone, from a supplier on the Internet, but I was in a fog.  Further, I believed that NHRMC would get Opsite 3000 any day.  After 29 days, and my followup every other day, NHRMC still has not ordered the wound dressing that Bonnie could tolerate, though Bonnie's case manager promised to look into it during our meeting 8 days ago.

Picture of Tegaderm related skin wound on Bonnie's left shoulder taken November 9, 2008.

This is the same wound a week later.   Photo taken November 16, 2008.

When NHRMC failed to order Opsiste 3000, the wound dressing that Bonnie can tolerate, I had a box of Opsite 3000 shipped by FedEX overnight by a nurse at Dana Farber Cancer Institute.  It arrived the next day.  But NHRMC was not able to get it from the mail room to Bonnie's room for another 24 hours.  Anticipating this delay, I told Bonnie's nurse and Social Worker that we should be looking for the arrival of this FedEX delivery, to no avail. 

Because the Opsite 3000 was not yet in her room,  a 4" x 8" white cloth bandage was taped over the 1/2" diameter hole in Bonnie's neck left from the trach tube.  When this white cloth bandage had to be removed 24 hours later, it caused Bonnie such pain that she cried out.  This is the first time Bonnie has cried out in 6 years.  I had to ask for the nurse to get an adhesive solvent to keep Bonnie from crying.  Her neck was a violent red after the tape was removed.  Her skin has become paper thin due to the years of Prednisone use.  

The Opsite 3000 bandage Bonnie tolerates well was used the next day.  It was much easier to remove without pain today, when the nurse went to change her dressings.  

 I had given the nurse the paperwork to put into Bonnie's folder documenting her allergy to Tegaderm AGAIN, three days ago.  Yet last night a nurse came into change a dressing on Bonnie's nose securing the tube going down her throat to feed her.  The nurse sailed in with Tegaderm.

I had to stop her and give her the Opsite 3000 to use instead.  Bonnie asked me to sleep in her room last night to keep her peaceful.   I lay listening to the machines and Bonnie's labored breathing. 

The scabs on Bonnie's lips and right cheek are tape allergy wounds from tape removed 2 weeks ago.  After 29 days Bonnie finally has Opsite 3000 on her wounds. 

After a rough night, Bonnie and I waited for the Rehabilitation doctor to assess Bonnie's ability to enter Rehabilitation this week.   He declined to accept Bonnie again, as he has several criteria that Bonnie does not yet meet. 

1)  Bonnie has to be able to do some of her own self care, (feeding herself, washing her face, brushing her teeth) for which she will need to be able to swallow and have more mobility of her arms and legs.  2)  Bonnie will have to be able to get out of bed and to a commode with some assistance for which she will need more leg strength and confidence. 

The rehabilitation specialists says for every single day Bonnie has been in bed, it will take 3 days of rehabilitation for her to recover strength and function.  That means it will take another 3 months to rehabilitate.  I speculate Bonnie will do far better than that. 

For the sake of providing a balanced account, it is important to say that Bonnie's doctors and nurses and the care she has been receiving are exceptionally good.  She trusts them as do I.  Trust, Verify and Correct as necessary.  The errors I have documented go with the territory. 

My mother has made it back from the hospital and a short stay in the Care Center, back to her own apartment.  I am again unreasonable tired.  

I drove home and slept in my own bed from 4PM til 9PM and hope to get a full nights sleep now.  Tomorrow is another day. 

/Daniel for BanD

Day 33 - Stable Condition - Pain - Moving to new Hospital? - Physical Rehabilitation milestones.

Bonnie continues to improve day by day.  She is able to move both arms with more range of motion.  She is able to raise her hands her nose, though she can still not scratch her face or reach her eyes. 

Bonnie's chest congestion has increased a bit, but she tests negative for pneumonia.  Bonnie has learned the trick of making herself heard.  She speaks in a hoarse whisper taking big breathes between every couple of words. 

Dr. Hughes says that Bonnie is ready to be moved from this Acute Care / Trauma oriented hospital to a Long Term Acute Care / Rehabilitation Hospital.  We elected to move to a Long Term Acute Care / Rehabilitation Hospital in Durham, which is part of the Duke Medical consortium.  We wanted to be close to Bonnie's current Bone Marrow Transplant Doctor at Duke.  But after reportedly qualifying a week earlier, we are told that Bonnie is now assessed as too healthy to move there. 

So we are in a holding pattern, waiting to see where Bonnie will go next. 

Mentally Bonnie is very with it, despite being in pain that Bonnie rates as 8 on the pain scale to 10.  Nine days ago I heard Bonnie complain of pain on the inside of her rectum, and difficulty evacuating.  When I questioned her closely she said she had been in pain there for 3 days before reporting it.   I reported this to her nurses.  For 2 days they flushed Bonnie's rectal tube, assessing that there may have been some blockage with solid fecal material.  Bonnie's liquid diet was remaining liquid as it ran out of the rectal tube.  But Bonnie continued to report pain.  Finally, 7 days ago a nurse pulled her rectal tube, which reduce the pain to some degree.  But Bonnie continued to have pain.  It has been explained away with the assumption that it was simply the excoriation caused by the rectal tube.  

But Bonnie's pain increased to the point where she was having to be treated with Oxycontin every 4 hours, though Bonnie frequently forgot to ask for her pain medication.  I would see her wince in pain every 10 - 15 minutes.   5 days ago I requested an examination by a Proctologist.  They made note of my request.  3 days ago I requested this again, each shift.  

I asked Bonnie to pay close attention to the sensations in her bowels and to see if she could visualize what was going on.  She continued to report to me and to the nurses she had impacted feces blocking her rectum, which pressed against her rectum when she passed some liquid and frequently during the day and night.  Apparently that area spasms involuntarily when it senses it has something it needs to pass, so despite Bonnie's attempts to simply relax she is hit with wincing pain every 10-15 minutes. 

Finally 3 nights ago a nurse examined Bonnie and remove some of the impacted feces, but she had to stop when Bonnie's rectum bled.  Bonnie says she feels a bit better but she still feels a "golf ball" inside her that she can not pass which continues to cause her a pain of 8 on the 10 scale.   

An 18th Century philosopher, Bishop Berkeley, created a theory of Immaterialism, which basically states that "matter does not exist, if one does not perceive it".  A scholar of Berkeley's work claims in his book that Berkeley suffered from severe constipation. 

Mentally Bonnie has been very much with it.  To distract ourselves we paid attention to backlogged mail, looking for anything that was impacted in our financial system.  We spent Friday night and all of Saturday going through a 10" tall stack of mail.  I brought all of the bills to the top and we started to sort out insurance issues and a billing issue from Mass Eye and Ear Infirmary, and getting her Medicare election filled out etc.  

Strangely stressful as I went through stacks and stacks of mail looking for overdue bills or critical mail.  Fortunately, so far we have only bounced two checks.  I still cringe thinking that we have missed something important. 

Sunday I have awakened to an eye infection and sore throat.  I have to wear a gown in Bonnie's room and sometimes wear gloves and wash my hands once an hour or so.  Hospitals are full of more dangerous germs than most places one can go.  Stress and fatigue are showing their twin heads, despite full nights of sleep.

Sunday night Bonnie called to say they were going to send her to surgery to remove the rest of the impacted feces. 

It is Monday and so the work week starts again for the hospital.  Bonnie will resume her Occupational and Physical Therapy.  The big milestone now is to get Bonnie strong enough to get to a potty chair with some assistance.

We are traveling across the rugged plane of reality.  We will get through this current stretch soon.  

/Daniel for BanD

Day 40 - Bonnie in a Rehabilitation Hospital

Bonnie graduated to a Rehabilitation Hospital in Burgaw, North Carolina about 2 hours north of our home on Oak Island.  In order to graduate Bonnie, NHRMC sent her to surgery to have the impacted feces removed.  After 13 or 14 days complaints this gave Bonnie immediate relief.  To say that it is disquieting that it took over 10 days for Bonnie and I to be heard and to effect a change to this 24/7 pain in Bonnie's ass, understates the facts. 

Given Bonnie's compromised immune system this was more than painful: decaying feces being constantly pressed against an excoriated and bleeding rectum was a risk to her survival.  Bonnie's white blood count has been more than double what it should be for over a week.  Fortunately, her donor's immune system seems to have protected her once again.  We thank God for Jay, and for his incredible proactive stem cells.  I worry that we may be running out of miracles and free passes from errors. 

I simply have to do better next time, or we may lose our long campaign over something so stupid as the routine side-effect of 30 days of opiates.  I have to be more watchful and persistent, sooner: not less active as some have urged.  We truly LOVE and admire the caregivers who have taken care of Bonnie for the last 40 days, and medical errors are, medical errors.  Kindness and medical errors often go on simultaneously.

Over and over we are discovering that "just going with the flow" in a hospital setting, and simply trusting that medical professionals will always do the right thing, while failing to distinguish between grounds for gratefulness and observed medical errors, can cost you your life. 

Here is yet another study..."Of the 270,491 deaths that occurred among patients who developed one or more patient safety incidents, 238,337 were potentially preventable."  Note if you are not in one of the top 5% hospitals you are 43% more likely to die of a medical error.  The good news is that you and the patient / loved one you are caring for CAN spot many errors before they happen.  Pain and discomfort are your friends.  Report them early and report them often with clear descriptions of the sensations and activities that cause the pain or discomfort.  Make sure the source(s) are found and addressed, and that you are not simply given a pain killer.  There are several other hints we have learned but I will leave them for another post.  Make sure you have an advocate who will observe and listen and speak up and who will get whatever is missing, corrected ASAHP.

Yesterday was our 20th wedding anniversary.  I was physically and emotionally exhausted.  I was too sick to make the 4 hour round trip drive.  Today is Thanksgiving.  I am in bed taking Theraflu, and Bonnie is alone in Burgaw, North Carolina. 

This is getting old and we have another month or two of rehabilitation to go. 

Tomorrow is another day.  I will be better tomorrow.  /Daniel for BanD

Day 41 - Bonnie has started her Physical Rehab with a veteran / practitioner.

First, thank you for your support, kind wishes and virtual (organic) chocolate chip cookies, and dare I say, love?  In a future posting I will ask Bonnie to help me unfold just how we experience you as a network of support. 

Bonnie has spoken of how she can sense the prayers of others.  For me writing allows me to stop and see, many times for the first time, what is up and what is next.  Witnessing what I am observing with friends in mind, helps me in this process.  I am not saying this well. 

Bonnie and I like to read the responses, some of which also come to us by e-mail.  We have such amazing friends.  And for reasons I can not find a way to express, I have a sense of being upheld, even by our friends who only occasionally read or write back. 

I can only speculate that Dick Shoup or Shingdup Tulku Rinpoche have some clear explanation of how such a network is constructed and how we sense and are supported by the connections.  In any case, you are palpable to us. 

Back to Bonnie.  Bonnie is amazing.  Her facial expression is coming back and the purple discoloration over the cheekbone she broke in her fall is almost totally absorbed.  She has increased strength and range of motion in both arms.  Her right arm is hers again.  It does what she wants, though she will need to build up her strength and range of motion.  Her left arm is still a bit balky, but she is working it and working it.  She is funny as she makes paddling motions with her hands in the bed.  She is like Abigail, she knows she is being cute, and she just goes on doing the funny motions as a kind of play. 

The conditions in the hospital need some work.  Bonnie pressed her emergency call button at lunch time and asked to have her diaper changed.  She was told her nurse was at lunch.  (It does not take a nurse to change a diaper).  When I arrived at 3:30 PM she still had not had her emergency call button and request for help addressed.  I asked her to buzz again.  I remind Bonnie that she has to be her own advocate, so she can come home sooner.   Two nurse assistants came within ten minutes this time.  I asked if they knew that Bonnie was immune compromised and could not be left for two or three hours with her diaper unchanged.  They looked shocked. 

Together we changed Bonnie's bedding and pullsheet and diaper.  They used very rough terrycloth washcloths found only in the cheapest motels to clean Bonnie's butt.  Bonnie told me that she found the cloths way too rough on her sore rectum and vagina.  Unbelievably, they do not have very hot water in the rooms, I speculate to prevent a patient from scalding themselves.  So we were reduced to using slightly lukewarm water. 

After 40 days of virtually no diaper rash, in two days Bonnie had developed a wide swath of red diaper rash with bumps, probably indicating a fungal infection.  When I asked for a sterile baby wipe, they said this hospital does not have any such thing.  They change diapers but do not have soft, sterile disposable cloths.  A cost-cutting measure I speculate.  I guess they do not account for the cost of patient discomfort or sepsis. 

I also saw that Bonnie had developed a new sore.  She had fresh abrasion where her left buttock meets her back.  At first I thought it was a bed sore from pressure, but it was in a place where there is not a pressure point.  Someone had pulled a sheet or rough towel from under Bonnie's back and had abraded her paper-thin skin.  There were three or four coils of freshly abraded epidermis on top of the pinkish-red dermis.  One of the nurse assistants used a wash cloth tinged with liquid feces to "wash" this virgin wound.  I drew my breath in.  I took over the washing.  I was able to gently wash and rinse Bonnie's nether regions, and then with a fresh cloth dab the new wound. 

Why should I worry about something as inconsequential as impacted feces or a "simple bedsore"?   "According to the HealthGrades' fifth annual Patient Safety in American Hospitals Study, failure to save the lives of Medicare beneficiaries who developed complications, bloodstream infections and bedsores accounted for almost 63% of the patient safety incidents. Almost 25% of Medicare beneficiaries who experienced patient safety incidents died between 2002 and 2004, and 82% of those deaths likely were preventable, according to the study." 

We called for her nurse to come in to consult on how we would dress her new wound.  I suggested Triamycin Antiseptic Ointment with a folded 4"x4" guaze pad held on with an Opsite 3000 bandage.  Bonnie's nurse wanted to know if I was "family".  I looked up at her incredulously.  I thought, "No, I am a pervert who walked in off the street and am lovingly washing this strange 65 year-old woman's ass, and asking how we should dress her wound.  I had these nurses assistants ring for you to come in so you could catch me in the act". 

Instead, I said, "Yes, I am her husband.  And uh, you are about 6 years late coming onto my shift.  Now how shall we dress this wound."  It turns out Bonnie's nurse did not know that she had an allergy to Tegaderm.  Tomorrow I will have to make sure we go through Bonnie's 5 page medical history summary with her medications and allergies on the first page. 

I notice that every time we change floor or hospital there is a "hand-off" and the potential for a fumble.  Even at Stanford and Harvard / Dana Farber Cancer Institute/ Brigham and Womens Hospitals they would lose track of what critical medications Bonnie was on.  Watch those hand-offs and look for evidence of fumbles. 

We got Bonnie all set and then we were able to converse in private again.  Bonnie is coming along so well.  She had a wonderful session with her new Physical Therapist who had to undergo rehabilitation herself, from a state of deconditioning similar to Bonnie's current state.  Bonnie told her new PT specialist that she has done this 3 times before.  Bonnie feels really good about the work they did together and what they will do when they restart on Monday.

I went out and bought some baby wipes and Lomotrin anti-fungal creme and returned to setup Bonnie's FM radio and iPod and cellphone.  I hope Bonnie has a good night.  I will see her tomorrow. 

Thanks for your love and support and witnessing the issues we are encountering as we migrate through the health care system.  I hope our odyssey and candid observations will make others' trips through similar terrain easier. 

/Daniel for BanD