First Hope

Chapter One

Scene [5]

First Hope

Murmurs from phantoms drift past my bed.
Except for technology, I would be dead.
Friends are misplaced, in my mansions of mind.
Reacquaint with me often, or be left behind.
                                          Renee’s Song

Jewish Memorial Hospital
1995/05/07 - 1995/09/05
Finances:
         I was a little discouraged after my phone call with Townsend.  If we can't get simple authority to sign for her, we will have to find another way to handle Renee's finances.  I stopped by my bank in Londonderry and asked them what to do.  They suggested that I could open a savings account in Trust for Renee.  It had to be in my name and Social Security Number since I didn't have guardianship of her affairs.  I could deposit her SSI checks there but they couldn't accept the welfare checks made out to her until the Guardianship matter was resolved.

         So I opened an account with one hundred dollars, to avoid the maintenance fees, and put the welfare checks in my safe deposit box, to deal with later.

First room:
         Renee's first room was adjacent to the nursing station on the 4th floor.  She shared the room with Gwen, a victim of a car accident 5 years before.  Both patients required ventilators and continuous monitoring.

         Gwen's husband, Larry , visited his wife often and was quite helpful filling us in on the way hospitals treat patients.  JMH was a jewel compared to some Gwen had been in in the past.

         Ferne and I marveled at his stamina for the last 5 years.  We wondered how long it might take for Renee to recover.  Five years seemed like an eternity... surly Renee would be up and home by then!

         The room was cramped, designed years before modern medicine and all the equipment requirement needs for today.  There was a small half-bath just inside the room door with two very small closets next to the bathroom door.  There were two chairs for visitors to share.  Besides the two large mechanical hospital beds there were two vents, two moisturizers, two I-V trees, two tray-tables, two blood-pressure gages, two white-boards and two cork-boards on the walls.  Not much space for anything else in the room.

         The JMH main building was perched on a steep hill making the parking lot uneven and congested.  The 4th floor was even with the roofs of the homes across the way and the transformers on the power pole along the street.  At night a street light, even with Renee’s window and about twenty feet away, flooded the room with unneeded light.  Renee's bed was next to the window.  When there were too many visitors for the available chairs, I would stand at the window and watch the birds and squirrels scamper along the wires just outside.  Renee's head faced left most of the time.  So, if she could see, she could pass the endless hours watching the birds too.

Posturing:
         During her first weeks at JMH, Renee would slowly contract her arms and legs while she was asleep.  When she brought her arms up to her chest, they could be straightened out again with relative ease.  The same for her legs.  Sometimes she would straighten them out again herself but usually they would remain bent for hours.

         The nurses reminded us these movements are called “posturing” and were not voluntary on her part.

         As Renee lays immobile for day, weeks, and months, the tendons in her arms, legs, hands and feet will shorten.  Flexing from normal activities, that keep the tendons long and flexible, are absent for a bedridden patient.  It will be necessary for us to straighten them often, because if we didn't, she would eventually become locked in the fetal position and be unable to move at all.

         She would keep her head turned to one side too.  We could gently straighten it out, but she would immediately return it to her left side when we let go.

         So we instituted a ritual for every visit of flexing all her extremities and to very gently move her head back and forth.

21st birthday:
         On the 29th of May, 1995, the whole family visited her.  We brought cupcakes with candles, balloons and presents.  It was a tight fit around her bed with all the equipment, but we managed to sing her happy birthday and open her presents for her.  We gave her slippers, a little blanket and a couple pajama sets.

         Nina braided her hair.  Neil looked a little bored, but he was a good kid and sat quietly reading in the corner.

Responses to sounds in the hall:
         One day, while we were hanging up our coats on arrival, we noticed Renee jump with a start when someone dropped a pan of utensils in the hall.  We told the nurse about it.

         She said, “Renee seems to hear some sounds.  She doesn't pay attention to you when you talk, but loud sounds do disturb her.  It's difficult to read her reactions sometimes.”

Initial evaluations for pain, tickle, foot reflex:
         Dr. Jenkoeack , JMH’s neurological specialist, made an evaluation of Renee’s response to pain.  She will pull her hand away when you lace a pencil between three fingers and press gently on the middle finger against the pencil.

         I also tickled the bottom of her feet and she moved her foot in response just as you or I would.

         The nurse said, “Pulling away from a tickle or pain is really a reaction, not a voluntary motion.  But it does indicate she feels and can react.”

Vision Conjectures:
         Sometimes Renee would be awake with her eyes wide open.  I could position myself right in her line of sight but she might not notice me right away.  She would lay there staring right through me for 30 sec or so, then jump like she was startled with my presents.

         After she noticed me, she would track me with her eyes fairly well.  I could move to about 45 degrees on either side of her before she would loose interest and resume staring straight ahead.

         However, she could be looking right at me, and be distracted  when someone walked past the door.

         From many observations like these I posited that her peripheral vision was better than her fovea vision (central focus in your eye).  I wondered if this was true and how it might have happened.

         My last job with General Electric involved archiving vast files of jet engine test data.  Reliable digital techniques for searching and retrieving data from such large databases have been around for years.  But they are cumbersome and require significant conventional computer horsepower, and expense.  I was interested in developing other ways to handle the data and save money.

         I looked into associative memory systems, still digital but using a different memory structure, and connectionist systems, not quite as digital and based on human neural networks.

         In my research into neural circuits and how the brain works, I ran across descriptions of near-death experiences.  The "warm bright light" that some people report seeing at death, before being revived, has been attributed to the slow death of brain vision cells due to lack of oxygen.  When the heart stops, these brain and optic nerve cells that comprise the vision systems, get deprived of oxygen and start to fire randomly as they die.  Thus the perceived theomorphic white light.

         However, if many cells died before revival, as might have happened in Renee's case, the ability to see would be permanently degraded.  The number of brain cells associated with peripheral vision is far less than that required for fovea vision.  A loss of say 50% would not affect the peripheral vision as much as the fovea.

         I think of Renee's vision as having a permanent dense fog right in the middle of her line of sight.  She could see the periphery just about as before, but in the center, it may be hard to recognize things.

Slowly removed from the vent:
         After a month or so, Renee's SpO2 levels remained high.  The vent was often not triggering by itself.  She seemed to be breathing more or less on her own.

         So, Dr. Fraser  suggested they try to wean Renee off the vent.  We concurred.

         The first thing to try was to see if she could breathe for an hour by herself.  They tested her one morning before we visited.

         A continuous SpO2 and heart rate monitor was hooked up before they shut off the vent.  They left the moisturizer running though.

         She tolerated it well and had no problems with her SpO2 levels.

         When we visited later that day, they did it again for three hours while we were there.  It was nice to have the noise in her room reduced by half.  Her roommate, Gwen, still needed her vent so the room wasn't completely quiet.

         They shut off the vent for four hours a day the following week, then increased it to eight hours per day for another week.  This proved she didn't need it anymore, so they discontinued the vent altogether.

Some days are good, I'm near to awake,
I feel the fever is about to break.
Probes and cultures, my body's a mess.
No cause to be found, so they blame CNS.
                              Renee’s Song

Weekly fevers:
         Ferne and I would visit together Saturday evenings and Sunday afternoons.  One evening, Renee had a low grade fever.  The nurses said she probably had a bug, took a culture, and put her on Tylenol.  The next day she seemed fine.

         The following week she got a rather high fever again on Saturday afternoon.  They became concerned because her cultures from the week before had all come back negative.

         Her fever got very high so they wrapped her in a rubber blanket with circulating water for thermal control.  They were able to hold down her temperature that way, but they still didn't know why she had the fever.  The blanket control console took up a significant amount of the remaining floor space at the foot of her bed.  More cultures were taken and she was given more Tylenol.

         Again, in another week, another fever.  This time it went over 106°F and she began to shudder.  She had a full blown seizure.  It lasted for about five minutes.  She got real rigid, pulled her arms up tight to her chest, and rolled her eyes up in their sockets.  I couldn't straighten her arms without fear of hurting her.

         They used the rubber blanket again, plus ice cubes under her arm pits, and cold washcloths on her forehead.  Not much helped this time.  She cooled down to 104°F but remained hot the whole time we were there.

         The next day she was almost back to normal and the cultures were still negative.

         We discussed the fevers with Dr. Fraser.  The weekly occurrences were not from any normal body cycle and they didn't have any indication of a virus or bug causing them.

         After consultations with other neurologists a consensus developed that the fevers were of CNS origin (Central Nervous System).  In effect, Renee's body thermostat was a little haywire.  Just not regulating as it should.  The brain damage was interfering with her temperature sensing and regulating systems.

         The only treatment was to relieve the symptoms.  Try to control her fevers with the thermal blanket, cold compresses, and Tylenol.

Contractures begin:
         The high fever occurred again in six days then ceased.  However, the effects of her seizure seemed to be permanent.  Her feet and wrists weren't as flexible as before.  The doctor said they were called contractures, and if we didn't flex her joints regularly they would get worse.  Eventually they would freeze all her joints and she would slowly contract into the fetal position.

         The nurses would flex her when they worked on her and they had a specialist who would give her PT and OT twice a week.  But if we could do it every time we visited there would be hope she could remain flexible.

Move down the hall:
         After Renee was off the vent for a while, she didn't need to be in the room with all the equipment.  Other patients were coming who did, so she was moved down the hall to room ___.  She shared the room with an elderly woman who was bedridden but able to talk some.  The woman’s sister visited about as often as we visited Renee.

         The room was much quieter without any vents running.  The mister was fed from a pressurized air line from the wall.  The room seemed much bigger without the equipment... but measured the same.

         Ferne and I continued to visit together on Saturdays and Sundays, but I was able to visit during lunch about three times a week, the days I worked at MDI.

Letter to court about her condition:
         Sometime in early April, Renee had received a letter from the Clerk of Superior Court, Rockingham County, New Hampshire, delivered to our Londonderry address.  We had intended to give it to her the next time she came home but the events of April 7th intervened and we forgot about it.

         She received a follow-up letter around April 20th.  At that time, Ferne opened both of them to see what they were about.

         Renee had been selected for Petit Jury service in Rockingham Superior Court in Brentwood, NH.

         At the time I said, "Either ignore it, or write ‘not at this address’ and return it.  Renee is not even a resident of New Hampshire anymore, and has other more important problems."  I'd like to have just let it go to see what the court would do.

         But Ferne wrote the clerk outlining Renee's medical problems and gave them the phone number of JMH so they could verify it.  She filled out the questionnaire that came with the first letter, too.

         The court clerk wrote back with a threatening letter about her civic responsibility and required a doctor’s statement of her inability to serve.

         I said, “They can’t make a simple phone call?  Do we have to do their work for them?”

         It took a couple of weeks, but Dr. Fraser gave us a letter and Ferne forwarded it to the clerk.

         The court clerk finally wrote back, the beginning of June, with an excusal of her Jury Duty Order but wanted to know when she recovered so they could reschedule her.

Evaluation and plateau:
         Around the end of August, Dr. Fraser gave us a detailed assessment of Renee.  The fevers had not returned and the vent was retired, but after 5 months, Renee’s condition wasn’t improving anymore.  Even with the onset of contractures, her requirements for care could be handled at any sub-acute care facility.

         His neurological team had examined Renee’s original EEG traces from BCH and compared them to another set taken at JMH.  Neurologically, Renee has plateaued.

Decision to discharge:
         We had mentioned to the nurses that it was an hour and a half drive each way to visit.  And, with winter coming, the drive would get longer and more stressful.

         My comments may have gotten back to the administration, because after Renee’s reassessment, Dr. Fraser told us they were planning to discharge her.

         Ferne and I were surprised.  We had become accustomed to the routine and frequency of our visits.  I asked about her required flexing to keep her limber.  He said PT and OT are available at most nursing homes, so her contractures can be dealt with.

         After more conversation, we got the impression that they were impatient to get her out of the facility.  I suspect it may have been for financial reasons.  Renee had no insurance except for MassHealth.

Search for a long-term home nearer us:
         The JMH Social Worker asked if we would want her moved right into our town in New Hampshire.  I was afraid the state coverage available in New Hampshire would be significantly less than in Massachusetts.  (All our services are less.)  So, I asked her to survey several nursing homes in northern Massachusetts that would be closer but still in the state.

         She found one in Lawrence, MA, about 20 miles from our home.  We made an appointment to go to Town Manor Nursing Home (TMNH) on 1995/09/xx to interview the Social Services Director and tour the facility.


Page count      14
Word count    2717