Initial Progress

Chapter One

Scene [4]

Initial Progress


I behold a light ring, with a void in the middle.
It surrounds like Daddy's arms, when I was little.
I cling to my memories, I hold on tight.
The demons from the void, come out at night.
                                        Renee’s Song

BCH
1995/04/25 12:00-13:30 Tuesday [Don]
         When I arrived to see Renee at noon, Heidi was smiling and said, “She passed the test... just barely.”

         Delighted and relieved, I wanted to hug Heidi... but I caught myself short.  Don’t think I know her well enough to take that liberty.  So, I hugged Renee instead.

         Heidi and I talked about the test, continuing full body care for Renee, and what may be next.  Every time I looked at Heidi, I blushed.  What an inappropriate thing I almost did.  Such an ass.  Thank goodness the lights were low; she couldn’t have noticed.


BCH
1995/04/26 12:00-13:30 Wednesday [Don]
         Renee’s eyes had been closed for almost three weeks and seemed to be welded shut from the eye-goo that solidified and covered her tear ducts.  Each day I visited, I’d use warm water and a wash cloth to soften and remove the crust.

         The day after her Plugs-Out test, as I was washing her face, she half opened her eyes.  Wow, Renee, you’re back!

         I shouted for Heidi to come over to see, then realized it was her day off.  I was saddened Heidi, who we had become close to, wasn’t there to see Renee awaken.

         “Well, isn’t that nice,” the substitute nurse said.  “I’ll make a note of it.”

         This is a major development, you twit.  Call the neuro team or something.  My heart was in my mouth.

         The nurse leaned over Renee and used a penlight to look into her eyes.  She waved the light back and forth across her face.  “She’s not focusing or tracking.  They’re just open.”

         Opening her eyes merely moved Renee from comatose status to semi-comatose status.  There were no changes in any of her other conditions.

         She didn't blink either and had to have artificial tears put into her eyes every half hour or so.


         All this time, Renee had a vent tube and a feeding tube going in through her mouth.  Sometimes she bit down hard on them and I was afraid she would sever one.  Is she trying to talk?  Is she in pain?  Is she getting more control of her mouth?

         Although she rarely moved her arms or legs, they remained fairly flexible.  The staff measured her range of motion daily and placed inflatable bladders under her calves to move her legs periodically.  Her head seemed to always be pointed to her left.


BCH
1995/04/27 – 1995/04/30 [Ferne and Don]
         Since Renee passed the critical Plugs-Out test, they said she could be moved from the CICU.

         Ferne held my hand as the neurological team briefed us on the results of her latest EEG.  “She is and will be severely disabled for the foreseeable future.”

         “She’s opened her eyes now, but will she ever ‘wake up’ and be herself?” I asked.

         “Each brain injury is different.  In some cases, where there is an acute trauma to a localized area, that happens.  The brain rewires itself and takes over the damaged functions with other tissues.”

         “Like for stroke victims?” I asked.

         “Yes, however in Renee’s case, the anoxia has caused widespread damage.  You might say her brain looks like Swiss Cheese with many lesions.  There is some hope for improvement but not likely anything close to normal.”

         Ferne lowered her head and squeezed my hand hard.  I looked at Renee, with all the tubes, monitors, bags, and I-Vs sticking out of her.  My heart sank, This is your world now, sweetheart?

Prep to Go:
         Before she could be moved to a convalescent facility, Renee would need to have two procedures done.  A permanent connection to the ventilator had to be installed and, to get her off the I-Vs, a simpler method of feeding had to be found.

         She would need the vent for now, but with stronger Brain-Stem capacity, she might be weaned off it in the future.  They wanted to perform a tracheostomy to allow her to breathe through an incision in her throat and make hookup to the vent easier.

         With all the tubes going down her throat, the staff couldn’t tell if Renee still had a swallow reflex.  So, feeding through her mouth was out.  They wanted to install a Gastrostomy Tube (G-Tube) to put food directly into her stomach.

         We approved the surgical procedures, and the medical services representative started looking for a facility that could take her for post operative recovery.

Search for a Home:
         There are only two facilities near BCH that could handle Renee's care requirements: Spalding Rehabilitation Hospital in Boston’s West End, and Jewish Memorial Hospital and Rehabilitation Center in Roxbury.  Spalding was full and had no openings expected for several weeks.  Jewish Memorial1 (JMH) had a bed available and was requested to send an evaluation team to review Renee's BCH chart.  We were asked to go to JMH to see the facility and talk to the staff.  We did that on the first Thursday in May.

         There were questions of medical approvals and care decisions raised when we were interviewing JMH.  Renee was still 20 and I assumed that since we were her parents, and she was still a minor, we were considered responsible for her.  It did bother me a little because we had her two Welfare checks and no way to cash them for her.  I said I would check into obtaining “Power of Attorney.”

Echoes of Karen Ann Quinlan?
         More than a decade before, JMH was in the news concerning a patient similar to the Karen Ann Quinlan case.  Karen was the victim of a drug and alcohol accident in New Jersey and, in 1976, was declared brain dead by the doctors.  After months in intensive care, her religious family wanted to terminate the life support systems, give her to God, and end her tragedy.  More months of court fights, interference by DSS, doctors preventing family access, and dozens of newspaper stories... her ventilator was finally turned off.

         However, Karen had other plans.  She started breathing on her own and stayed alive.  She lived for almost ten more years, finally expiring from pneumonia in 1985.

         Her contribution to society was great.  The courts and the medical industry began establishing guidelines for “Right to  Life” and “Death with Dignity” decisions.  The importance of “Advance Directives” to avoid legal complications became apparent.  Most nursing homes now request them.

         We were very apprehensive about moving Renee to JMH because of our recollections of the affair, similar Quinlan, but we had limited knowledge of the facts.  We thought the family wanted to keep the patient’s care going while the state wanted to end it.

         After a quick check of news stories from that period, we realized the hospital was on the same side as we would have been.  The State seems to change their priorities unexpectedly.  Sometimes it is for life, sometimes it is for costs.  Little did we know at the time just how fickle the State can be.

Guardianship?
         I called a local lawyer, James Townsend, whose former partner, Bruce Larkin, had done some business work for me in 1986.  I asked about how to get “Power of Attorney” for Renee.  I wanted to cash her two SSI checks and put them in a savings account for her in her name and Social Security number.

         He said, “A person has to understand and be able to grant Power of Attorney.  Renee is too impaired to do that.  You need to request Guardianship, and it will have to be probated in a Massachusetts court.”

         “How much would that cost?”

         “Probably a little less than a thousand dollars.”

         Since her checks only amounted to about $350.00, incurring the court costs would not be worthwhile.  I said, “The medical people all ask us for her care decisions already.  I don’t think we can afford to go that route.”

         The attorney was more interested in the circumstances of Renee’s overdose, because there may be someone who could be held responsible... and sued.

         I thought about that little twerp, Sukki Min, for a second.  What kind of assets would he have?  Then, I told Townsend, “We have no interest in pursuing that.”

BCH Checkout:
         A BCH social worker handled the arrangements.  She helped us fill out the state forms to put Renee on the Medicaid rolls in Massachusetts (Mass Health).  I filled out the Social Security Administration forms and designated myself as the “Representative Payee” for her $65 personal needs check she would get each month.

         She also gave us a copy of Renee's chart, now almost filling the 3-inch binder, before Renee left for JMH.

         On May 3rd the surgeons performed a tracheostomy to install a Trach into her throat and a gastrostomy to insert a G-Tube into her stomach.  I visited Renee the last time at BCH on Friday, May 5th.  I thanked the nurses and doctors for all they had done, kissed Renee, and said, “We’ll see you at your new home tomorrow.”

         She was transported to JMH by ambulance, Saturday morning, May 6th.


Page count        8
Word count    1531

Footnotes
1  The Jewish Memorial Hospital & Rehabilitation Center was founded in 1913 as the Beth Israel Hospital.  It has 207 beds and is fully accredited to offer acute chronic rehabilitative care.  It specializes in cardiac, pulmonary, psychiatric, and other medically-complicated rehabilitation.
Location:  59 Townsend Street
Boston, MA 02119
617-442-8760
http://www.jmhrc.com/jmhrc001.htm

The mission of Jewish Memorial Hospital and Rehabilitation Center is to deliver quality rehabilitative and extended acute medical care in the diverse communities that we serve. Jewish Memorial strives for continuous quality improvement by supporting and developing services and programs sensitive to patients, staff and the community.
Description:
Jewish Memorial Hospital and Rehabilitation Center offer a structured program that includes:
·          Individual assessment and medical treatment to help patients recover from an acute episode of injury.
·          Rehabilitation by registered physical, occupational and speech therapists supervised by a physiatrist.
·          Specialized exercise equipment designed to increase mobility in a safe environment.
·          Recreation therapy to productively use leisure time in a manner which contributes to well-being.
·          Appropriate consultation from other hospital specialists for additional medical and behavior complications.
·          Comprehensive case management, discharge planning after care planning.
History:
Jewish Memorial Hospital was founded in 1928, on the original site of Beth Israel Hospital as a haven for the chronically ill.  In 1992, shortly after the completion of the new ambulatory care building, the hospital was renamed Jewish Memorial Hospital and Rehabilitation Center to reflect the change from the initial focus on convalescent care to our current dual focus on convalescence care and rehabilitation. 
JMHRC is a 207-bed inpatient facility dedicated to treating complex medical and behavioral needs of the Greater Boston Community.
JMHRC is a respected and valued resource for patients that require specialized medical care for a longer period of time than would be appropriate in an acute hospital.
JMHRC is organized around distinct inpatient program offerings: cardiac, medical rehabilitation, pulmonary, pulmonary/ventilator care and medical behavior.
Contact person: Pauline Coulter, Director, Volunteer/Community Services, (phone this person), (email this person)
Office fax number: [phone]