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

Comments

[Judy and Tim Maloney]

Hey loves! Happy Thanksgiving. So appreciate your updates and writings. We send my prayers your way so often. We are in Seattle with Charley and Rhoda for Thanksgiving. Appreciate what you say about friends as we are that for you!I just returned from India - left 12 hours before the attacks - had been in all of those places just a week prior. Intending a new era for healing through Indian love. Hope you enjoyed your turkey! Love Judy and Tim.

[Mary Lou Wertz]

What a shock!! I'm ashamed that I haven't checked this site in quite a while. Last I knew you were traveling the States and Bonnie was doing quite well. Imagine my shock when I came on the site tonite. It was upsetting to learn of all Bonnie went thru from the fall. You are so fortunate for such a loving and supportive husband and family. My prayers have been for her continued improvement from her transplant problems. I can see from the postings that she has been through a lot of additional life threatening problems caused by the fall. Again, prayers are prevailing for her.

I've been quite involved with my mother's dimentia/Altzheimer's problems since July. Her mental state deteriorated at an astounding rate. She wouldn't eat and her wishes were NO FEEDING TUBE OR EXTREME MEASURES TO SUSTAIN LIFE. In August she was put on pureed food and in mid-October was on a strictly liquid diet. She did not handle that very well either. She couldn't remember how to sip thru a straw or swallow very well. On Nov. 7th, she went to be with the Lord and all her loved ones who were waiting there for her. It's very hard, and we all miss her terribly, but wouldn't want her to linger any longer in the state she was in.

On a happy note, our son Eric and his family were here for Thanksgiving. They had been up a couple weeks ago for Mom's funeral and we weren't sure the weather would cooperate for two visits in a row, but our prayers were answered for us for their safe travel.The Lord knew my son, daughter-in-law and grandkids would help Ed and I through these sad times.

I will continue to pray for Bonnie and all of her family, as well as Daniel's Mother.

Your friends in Pennsylvania, Mary Lou & Ed

[Betsy Hall]

Condolences to Mary Lou on the loss of your Mom. I appreciate your having written about this in the blog as it's another reminder how none of us know what will happen next. Each moment a miracle really. As we enter December I send gentle caresses to Bonnie and Daniel and a bit of chocolate fairy dust to you all! all my best, betsy in Santa Rosa CA

[Amy Hyams]

Daniel,

A HUGE reason that Bonnie's recovery is doing better than anyone (other than you and her other loved ones) thought it could is that her family is tracking her every day. If you were not there, even with all the strength and stubbornness that Bonnie possesses, the story would be very different at this point in time.

I work as a patient advocate so I'm with people in hospitals on a very regular basis and I have some expertise when I say, it is you and your family that has kept Bonnie alive. Your approach to trust, verify and correct is just right. Because our health systems are so terribly overburdened, every patient should ideally have an actual "care" provider, not just a physician or nurse.

Hang in there, you're doing amazing and truly spiritual work.

Amy

[Betsy Hall]

I second all Amy says. As I've said before, care often involves either having multiple family members who can do what Daniel has done or hiring a private duty nurse or aide. I just don't have any idea how Daniel does this year in year out, day in day out, month in month out, often for 24 hour stretches, often 7 days a week. I am not sure it is physically or emotionally healthy AND I agree that without this loving profound attention---Bonnie would not be with us. Also speaking as a patient advocate and family of patient advocate..... TAKING CARE OF YOURSELF is of EQUAL MAGNITUDE! betsy