April 1987
SCOTT SINGS AT A PASSOVER SEDER

Later on April 13-14, 1987, we had two Passover seders in Scott's hospital room in the Babies Hospital, attended by Scott's grandparents and Rena and me and of course Scott.  Although Scott did not seem too alert that day, when I began to chant "the four questions" in Hebrew, all of a sudden, Scott began to sing them also, in perfect melody.  What a beautiful sound that made to my ears.  In April, 1988, after Scott was in a coma and shortly before he passed away, we had a Passover seder at Scott's bedside right in the middle of the 9th Floor Pediatric ICU in the Babies Hospital.  It was replete with prayer books, a freshly cooked eight pound roast beef, matzo, gefilte fish, horse radish, macaroons, wine and soda.  Many of the doctors and nurses came by, listened to the service and joined us in "breaking matzo".  It was a very touching ceremony, and a number of the medical and nursing staff have commented about it in letters to us. 

Scott had his brain shunt internalized on Friday, April 10, 1987 and by April 13, 1987, he had recuperated well enough to be transferred out of the NIICU and back to a room in Babies Hospital. 

In the meantime, Scott hadn't eaten regularly in almost a month nor had he been receiving physical therapy.  He was very thin and weak.  Back in Babies Hospital, these issues were immediately addressed.  Physical therapy was begun again and they started giving him food supplements. 

SCOTT HAS ROUND THE CLOCK PRIVATE-DUTY NURSING CARE

It was also during this hospital admission that we were confronted with the issue of 24 hour private duty nursing for Scott, which was started in April, 1987 and continued for a year until his death in April, 1988, except when he was under the care of nurses in the ICU. 

After the brain surgery, Scott needed more nursing care in the hospital than could be provided by the very overworked Babies 11 South nursing staff and we knew that when we eventually took him home, Rena and couldn't handle Scott's everyday care by ourselves.  Scott had to have medicine given to him frequently; he had to have his shunt valve manually pumped from time to time; his blood and urine had to be analyzed often; his bedding and clothing had to be changed; he had to be assisted from bed to wheelchair; and of course, he had to watched for seizure activity constantly.

At first, in the hospital, the nurses were provided by the hospital's "Registry Office".  When we took him home, most of Scott's nursing care was provided by a private health care agency although often, we had to find our own nurses and even fill in on some shifts when we were unable to obtain a nurse either through the agency or from our own list.

From the time that Scott went back into the hospital on Saturday, March 28, 1987, shortly before his major brain surgery on April 1, 1987, until his passing on April 16, 1988, a period of 385 days, Scott required full time 24 hour per day nursing services, which were provided either by hospital ICU nurses or private duty nurses, both in the hospital and at home.  This period involved 770 twelve hour shifts or 1155 eight hour shifts.  Thus it was no longer simply a case of dealing with two attending physicians [Dr. Gold and Dr. Carmel], various rotating residents and interns and the regular floor nurses in Babies 11 North or in the NIICU or the Pediatric ICU. 

Thinking ahead then, Rena and I didn't look forward to the unknown future of having to deal with a whole new group of unfamiliar nurses and we spoke anxiously to each other about the negative stereotypes we had heard about who supposedly became private duty nurses [i.e., older nurses about to retire, nurses who had been terminated from hospital staff positions, etc.].  I am pleased to report however that looking back, with very few exceptions, we couldn't have been more wrong and misguided.  By and large, the private duty nurses who took care of Scott were very well trained, and especially caring and dedicated to providing the best nursing care and compassionate companionship that was humanly possible.  

I particularly remember Jeanne Baer who often came to visit Scott on her own time with her dog "Patches" and brought him presents.  I especially recall Beatrice Opong whose humor and compassion for Scott was always welcome.  I specifically recollect Mary Crawford who often travelled on the subway from the far reaches of Brooklyn, to take care of him and to visit him in the hospital, on her days off.  I remember Debby Wallace who cried bitterly one night when her replacement didn't show up.  And I'll never forget Claudia Blankinship, who spoke French with Scott and read stories to him until she was hoarse.        

SCOTT LEAVES THE HOSPITAL  

Scott left the hospital on April 25, 1987 and waiting for him at home was a rented hospital bed instead of his own and his wheelchair.  He had quite a lot of different medicine to take and in order to make sure the various nurses strictly kept to the schedule, I created a computer printout scheduling his medicines with columns for date, time, name of medicine and dosage. We worked it out that each time medicine was given, the nurse initialed the printout.  I had also created a computer printout, detailing Scott's medical history over the years which was added to as time went on and it became very convenient to give Scott's medical history to the house staff every time Scott was readmitted to the hospital.  In a teaching hospital such as Columbia Presbyterian, the residents change quite frequently, and especially at times of stress, such as an emergency hospital admission, it was important to have all of the information readily available, even before Scott's old charts could be requisitioned from the hospital's record room. 

While Scott was home, we took him to several toy stores and restaurants.  At times he was alert and enjoyed shopping and at other times, he would doze off or simply be very quiet.  Also we noticed that after three spinal surgeries, Scott did not tolerate well, either long walks in the wheel chair or riding in the car, which caused him pain and discomfort.  We alleviated this problem to some extent by purchasing a special custom designed air-filled rubber cushion for his wheel chair which was recommended to us by another patient of Dr. Gold's who was confined to a wheel chair and had researched the issue thoroughly for himself, from which Scott benefitted.  As far as Scott's eating habits were concerned, they never were the same again.  After April, 1987, I cannot remember Scott eating with gusto again.  Thereafter, he was given liquid food supplements although he still preferred his coca cola or Hawaiian Punch and in the last few months of his life was fed through a nose tube.

SCOTT DISPLAY'S HIS SENSE OF HUMOR AT HOME

But Scott was still alert and his humor persisted for some time.  For example, late one day David, a new male nurse came to the house to take care of Scott, for the eight PM to eight AM shift.  When I came home from work that day, I met him briefly and went into  my bedroom to change into comfortable clothes.  When I came out, he beckoned for me to come into Scott's room and showed me a rash which had developed on Scott's skin.  Being of Filipino nationality, he described the rash as "pimples" with a heavy accent [i.e., "peemples"].  Scott thought this was very funny and kept imitating the word "peemples."  David was very embarrassed by Scott's antics and asked him to stop, telling him that he was embarrassed by his accent.  The more he asked Scott to stop, the more Scott kept repeating "peemples".  Finally, David said to Scott, "All right, if you won't stop imitating my Filipino accent, you have to promise me that you won't do it outside of this room," to which Scott quickly agreed.  The next morning, at Scott's bedside, while David was giving report to the new nurse, all of a sudden Scott interrupted with "peemples, peemples".  David was embarrassed and angrily reminded Scott that he had made a deal and was not keeping his promise to which Scott quickly responded "But I'm not doing it outside of my room."  Even David had a good laugh at this point.  

SCOTT GETS A DOG

When Scott came home from the hospital in late April, 1987, he immediately started a campaign for a dog to replace Mookie.  He said that he wanted a Mookie II as a companion, especially since he was at home.  I didn't immediately respond to his requests since I was concerned about the responsibility of having a dog again with an ill child.  I thought to myself "What if we have to go back to the hospital with Scott?  Who will take care of the dog?  After only a month of procrastination, on May 26, 1987, I relented and purchased "Mookie II" from the same breeder from whom we had obtained Mookie I.  Scott and the dog immediately fell in love with each other.  We decided to attempt to paper train the dog and not take him out on the street so as to avoid bringing germs from the street into the house.  Mookie II was confined to Scott's room and it became quite comical to watch the nurses stepping over the doggy gate with pans of water and other items.  Mookie II would bark at them and playfully snap at their heels.  Often Scott would ask for him in his bed or in the wheelchair and they became constant companions.  It wasn't until more than a year later after Scott's passing that Mookie II learned what the streets of New York were like for he never left our apartment while Scott was alive.

MAY, 1987

MORE CHEMOTHERAPY 

In early May, 1987, Scott went back into the hospital for two days for his second chemotherapy treatment.  Rena accompanied him this time, armed with numerous tape recordings of his favorite singers, especially Neil Sedaka.  Scott made the mistake of eating  breakfast before the start of the treatment and it didn't stay with him very long.  This time however, Scott was not in a coma, as during his first chemotherapy treatment, and all things being equal, he tolerated it fairly well.  He had been told and we all believed that this treatment would make him well again.  Rena especially was hopeful.  She reasoned that the radiotherapy almost did it in 1977 and the chemotherapy would do what the radiotherapy hadn't accomplished.

JUNE, 1987

ANOTHER BRAIN SHUNT REVISION

Scott was home the rest of the month of May, 1987 but went back to the hospital in early June for his third chemotherapy treatment and a shunt revision, which was performed on June 5, 1987 and left the hospital five days later on June 10, 1987; but not without having a second allergic reaction to vancromyicin on June 8, 1987. 

THE SUMMER OF 1987

SCOTT SPENDS MOST OF THE SUMMER OF 1987 IN THE HOSPITAL

SCOTT HAS SEIZURE ACTIVITY 

Only four days later, on Sunday, June 14, 1987, I was in my office, meeting with clients, when I got an urgent call from Rena and the nurse, informing me that Scott was having seizure activity, which was described to me as some slight twitching of his eyelid and some movement of his arm.  The last thing he said before going into seizures was:  "I'm dying."

I cut our meeting short immediately and raced home.  After speaking to Dr. Gold by telephone, we decided to transport Scott to the hospital by car.   Scott sat in the back with Rena and the nurse, and I drove.  Along the way we picked up a police escort and made it from our home at 78th Street and Third Avenue to Columbia Presbyterian Hospital at 168th Street and Broadway, in less than twenty minutes.  Scott was placed in the NIICU overnight and was transferred over to Babies Hospital the next day.  Somehow, he recovered swiftly because on June 15, 1987, Scott made me feel good when he said "Dad, I see you."  Soon he was reading a TV Guide, searching for his favorite program.  It seems that Scott's Dilantin [the anti-convulsant drug] level had become dangerously low at home because neither we nor the private duty nurses realized that Scott was not holding down his medicine in between bouts of nausea and diarrhea.  The next day, June 16, 1987, Scott was depressed.  I was at my office talking to Scott on the telephone in his hospital room and he startled me by suddenly saying:  "I don't want to die."

On June 17, 18, 1987, Scott was still depressed, refused to eat or drink and even refused to get on the telephone to talk to me.  Later that day, he had additional seizure activity and was transferred back to the ICU and on June 19, 1987, he had a broviac catheter surgically inserted into a major blood vessel⁴¹ and after recuperation, and receiving a blood transfusion of Rena's blood on July 3, 1987, Scott was discharged and went home on July 4, 1987.

I recall one harrowing experience that occurred during this admission.  On Friday, June 26, 1987, Scott was transported from his room in Babies Hospital to the operating room at the Neurological Institute for internalization of his shunt.  As usual, the trip was through the underground tunnel which is dirty, drafty and without communication facilities.  Since Scott's brain shunt had been externalized, it was attached by a long sterile plastic tubing hanging on a pole.  As we wheeled Scott on the stretcher, the private duty nurse followed, pushing a rolling pole to which the shunt bag was attached.  The stretcher and the pole were connected by the long sterile plastic tubing, making a temporarily closed system running from Scott's brain to the bag.  As we approached a door, the nurse turned to hold the door, but the stretcher kept going, causing the sterile plastic tube to break near Scott's head.  I was frantic for fear that Scott was now very susceptible to infection, especially since we would be travelling through the underground tunnel which was very dirty.  As it turned out, we got to the operating room within minutes and the neurosurgeons tied off the tube which was replaced during the surgery.  This time, the lower end of the shunt was placed in Scott's chest [i.e., in his plural cavity] because the doctors realized that it wasn't working very well in his intestine.  They told me later that if this mishap had to happen, it couldn't have happened at a better time, immediately before scheduled surgery, when the damage could be rectified quickly before germs could enter the system and find their way up to Scott's brain. 

JULY, 1987

SCOTT HAS SEIZURE ACTIVITY AGAIN AND IS HOSPITALIZED

Not so long afterwards, Scott had been home only a short while after discharge from the hospital on July 4, 1987 when I got a call at the office on Wednesday, July 15, 1987, from the nurse at home and our maid Mandy⁴²that Scott was having seizure activity again.  Rena was not home at the time and couldn't be contacted by telephone.⁴³  On my way out the door, I called 911 for an ambulance and arrived home, less than two miles away, by taxicab about a half hour later [midtown traffic was horrible].  The police were there but the NYC ambulance had not arrived as yet and Scott was not conscious.  We were all rather frantic until it came some minutes later.  The attendants immediately began to administer oxygen and anti-convulsant medication and we had a long argument concerning whether Scott would be taken to the nearest NYC municipal hospital, as required by their regulations.  Dr. Gold was on the telephone, pleading with them to transport Scott to Columbia Presbyterian Medical Center where he and Scott's other doctors were standing by and where his medical history was known.  Besides, a municipal hospital is simply not equipped to deal with a long term young neurological patient as well as the Neurological Institute and the Babies Hospital but the ambulance attendants were sticking to their guns.  Finally I got hold of a doctor in charge of their trauma center and he authorized the transport of Scott to Columbia Presbyterian.  While this was going on, Rena returned home and saw the ambulance in front of the apartment house where we live without realizing that it was there for Scott.  She never dreamed that he was in trouble because he was in good shape when she left the apartment earlier to run an errand.  It was only when she got off the elevator and the ambulance crew followed her to our front door that she realized that they were there for Scott.  Needless to say, she was frantic with fear and anxiety when she raced inside to be confronted with a sea of uniforms and police.  As was our customary practice in a crisis, we left her home and I accompanied Scott in the ambulance to the hospital.  We knew that if Scott survived this emergency, there would be plenty of time for Rena to be with him at the hospital.

JULY 15, 1987 - WE ARE ASKED TO "PULL THE PLUG" AGAIN 

At the emergency room, Scott was immediately placed on the "crash table" and a bevy of doctors began to work on him with frenzied activity.  His vital signs were very poor and it took some time before they were able to insert a respirator tube and attach him to life support once again.  All during this time, I stood at the foot of the "crash table," answering doctor's questions about Scott's history and his current medication, etc.  Of course I was very worried that Scott wasn't going to make it, but I thought to myself, if that were so, the doctors would have chased me out long before.  Just as I was thinking this, one of the doctors in charge happened to look up, caught my eye and came over to me and escorted me out.  Now I was sure that he wasn't going to make it.  I felt so alone.  The same doctor had told me earlier that I should seriously consider telling them not to put Scott on a respirator because it was obvious that his disease was terminal and "What kind of quality of life could there be attached to a respirator from which he would not come off?"  By this time I was no longer offended or even shocked by the suggestion of "pulling the plug" since I had become conditioned to this way of thinking by the earlier experience in April, 1987.  Nevertheless, I wasn't amenable to it.  When Dr. Gold came to the emergency room, I spoke with him together with the other doctor, repeated the suggestion in front of Dr. Gold and politely but firmly declined it.  Later, this doctor after watching Scott miraculously survive this and other crises told us that he learned to admire the Goldstein family and had in fact learned a great deal from us and had changed his own thinking on the subject of dealing with terminally ill patients, especially children.

SCOTT'S FIFTEENTH AND LAST BIRTHDAY IS CELEBRATED IN THE ICU

After his vital signs had somewhat stabilized, Scott was taken from  the emergency room to the 9th floor Pediatric ICU in Babies Hospital where he was admitted and remained until his fifteenth birthday on July 21, 1987, when he was transferred back to Babies Hospital.  During this time, he was a real sick pup.  He was in a coma for several days until the seizure activity was controlled and then he remained on the respirator for several days thereafter.  I gave blood on July 16, 1987 for future use by Scott.  Of course we had a birthday party for him in the hospital which turned out to be his last birthday party.  I remember the cake and the fruit but there is not too much you can do in an intensive care unit to celebrate anything, especially when your child has just come off a respirator the day before and his throat is too sore to eat.

We still have Scott's 1987 "Fifteenth Birthday" card, signed by the Babies 11 South staff nurses at the hospital.  It was handmade on yellow computer paper that the hospital ordinarily uses for interim lab reports.  Looking at it recently, reminded me of a funny incident which was typical of the way Scott interjected humor in otherwise tense hospital situations, in order to ease the tension for the medical and nursing staff.  Among the nurses who signed the card was "Traitor Vince"  Vince was a male nurse who regularly worked the night shift on Babies 11 South.  As the result of being on the night shift, he was often on duty when the young residents came by to take a blood sample from the patients.  Now taking blood from a young child in a teaching hospital is often one of the most frightening experiences a youngster faces because the child is awake while a tiny butterfly needle is inserted in a blood vessel, frequently with some hesitation and multiple efforts by a relatively inexperienced young resident doctor.  On more than one of these occasions, Vince was there, firmly holding Scott's arm while the young resident poked at it with the needle until he was successful in drawing blood for the lab.  One night, after a particularly long and grueling struggle, during which Scott cried and cursed, Vince remained to clean up.  You would think that Scott hated him after what had occurred.  Instead, Scott calmed down very quickly, and with a twinkle in his eye, said:

The day after his birthday, July 22, 1987, Scott tired, off the respirator and had to be put back on it.  He stayed on the respirator until August 5, 1987 when he was "extubated," only to have to be "intubated" later the same day.  His trachea had become swollen from having been on the respirator so long and it interfered with his breathing despite the progress he had made which resulted in the tube coming out for several hours.  On and off the respirator was such a frustrating experience for all of us but we did not give up hope that eventually Scott would come off it.

Rena became quite expert in watching and monitoring the respirator as well as all of the electronic monitors attached to Scott.  With no medical training other than her own observation and asking some pointed questions of the medical and nursing staff in the ICU, she could spot a trend in Scott's condition, often before it was picked up by the doctors and nurses.  Besides, when she was at the hospital, she rarely left Scott's side, except for personal necessity.  On several occasions, she was instrumental in shortening the time that Scott was on the respirator by speaking up and politely but firmly suggesting that he be weaned from it.  In fact, she would actually tell them how to do it by proposing  changing pieces of equipment.  Often her suggestions worked because the process of weaning a patient from a respirator seemed to be a combination of trial and error and knowledge of the patient as well as require medical training.  

Once, in the middle of the night, when a young resident doctor was alarmed by certain blood gas laboratory reports, and was about to put Scott back on the respirator, Rena and I raced back to the hospital and prevented it by staying up all night with him, while encouraging increased chest PT and other measures designed to increase the level of oxygen and decrease the level of carbon dioxide in Scott's blood.  She was a tiger when it came to protecting our son from what was considered otherwise routine hospital procedures but which she considered to be unnecessarily invasive.

AUGUST, 1987

SCOTT HAS A TRACHEOSTOMY 

On August 6, 1987, a tracheostomy was performed on Scott, surgically opening a small hole in his trachea, which bypassed the mouth and throat for breathing.  It had been suggested to us for some time and we had hesitated to give our consent because we didn't want to subject Scott to more surgery at a time when the question of his very survival was in issue.  It's funny how a parent's attitude can change as he or she gets past the shock of initially hearing for the first time about what seems like an overwhelming invasive procedure and becomes conditioned to it as prudent and necessary.  I can remember Rena's initial reaction to a "trach" earlier in the summer.  She said "Over my dead body".  By early August however, she was asking me to call the doctors and request them to place Scott at the head of the operating room schedule for a "Trach".   His breathing gradually improved and Scott went off the respirator on August 15, 1987.  By August 21, 1987, Scott had improved well enough to be transferred out of the Pediatric ICU and back to Babies 11 South.  It was a banner day and the nurses cheered in the ICU as Scott left.  It had been a very difficult summer and Scott's survival was open to question on many an occasion during the summer of 1987.  But still we did not give up hope.  By August 23, 1987, Scott was eating his favorite hamburger again and on August 31, 1987, Scott was discharged from the hospital and after packing an accumulation of stuff⁴⁵ gathered over the summer, we all went home in our friend Richard Sorota's station wagon, who often came to the hospital to get us for those wonderful trips home.

As often occurred, our peace and quiet at home did not last long.  By Friday, September 4, 1987, Scott's head was tilted back and stiff and new worries about the possibility of meningitis or additional growth of tumor tissue, came to mind.  His pediatrician examined him and it was determined that he had a strep throat.  So it was back to the hospital for Labor Day Weekend for IV antibiotics and a blood workup but we came home on September 7, 1987.

NOVEMBER, 1987

ANOTHER SHUNT REVISION 

Scott was in fairly good shape during the rest of September and all of October, 1987.  He remained home which he enjoyed very much after the long summer in the hospital.  By November 4, 1987, Scott experienced some breathing problems and was readmitted to the Pediatric ICU at Babies Hospital where he remained until November 13, 1987.  During this admission, on November 10, 1987, Scott had another shunt revision, this time leading from his brain to the vena cava artery of his heart. 

DECEMBER, 1987

SCOTT IS HOSPITALIZED AGAIN WITH INFECTION 

Scott seemed to be doing well at home and even got me to take him to his favorite japanese restaurant on December 19, 1987.  By 9:00 P.M. that evening, he had 103-104 temperature and a high respiration of 53.  It was back to the hospital once again.  Scott had picked up an infectious process either through his broviac line or from the brain shunt and we remained in the hospital with antibiotic therapy until December 29, 1987 when he was discharged. 

JANUARY, 1988

SCOTT'S LAST MONTH AT HOME 

In early January, 1988, after Scott was home, we all had a little scare.  One day, one of the private duty nurses apparently cut Scott's broviac line, probably with scissors, while attempting to cut away some bandage.  She probably panicked and rather than tell us about it immediately, covered up the incident by taping over the cut broviac line with tape.  On a later shift, another one of the nurses observed some unexplained leakage and upon examination of the broviac site, discovered the tape and the cut broviac line.  This led to a series of calls to the hospital and the concern that Scott might need some additional surgery in order to replace the broviac line which had been surgically inserted the previous June.  Luckily, when we got to the hospital, they were able to repair the broken line easily without surgical intervention. 

SCOTT STILL DISPLAYS HIS SENSE OF HUMOR 

Meanwhile, on the night of Friday, January 16, 1988, we had another scare.  It seems that about 5;00 A.M. in the morning, the private duty nurse taking care of Scott, was new and she observed something alarming, while turning him from one side to the other.  Previously, a large red bump had been observed on Scott's back, just below the surgical site of his most recent three spinal surgeries [at T11].  When it opened and began to ooze, the nurses were cautioned to keep it sterile and an ointment was applied to it periodically.  It was probably assumed that one of the stitches had become infected.  That night, in the wee hours of the morning, the nurse observed something which caused her to waken and summon me to Scott's bedside.  When Scott heard my voice, he gave me a cheery "Hello Dad.  What brings you in my room so early in the morning?"  I gave him a big kiss and looked at his back.  I was not wearing my glasses and merely observed something white which I assumed was part of a bandage stuck to his skin.  When I put on my glasses, I was shocked to see a small white catheter sticking out of Scott's skin, about an eighth of an inch.  Somehow, Scott's spinal shunt had become loose and had migrated to the surface of his skin where it penetrated it and was now exposed.  This frightened me because I knew that there was a danger of infection travelling from the outside to Scott's central nervous system and of course I was concerned that Scott would have to have additional surgery to replace the damaged spinal shunt.  At the same time, it seemed kind of early in the morning to bother Drs. Gold or Carmel and I wondered whether or not it could wait until after 8:00 A.M.  I resolved the issue by calling Dr. Carmel's answering service and leaving it to their discretion whether or not to bother Dr. Carmel so early in the morning.  Previously, he had given us his home telephone number and his weekend number and insisted that we call him immediately when ever anything concerned us.  Dr. Gold similarly had made himself available to us at all hours of the day and night.  Nevertheless, we didn't want to take advantage of our close relationship.  Shortly, Dr. Carmel was on the telephone and instructed me to bring Scott to the emergency room at 8:00 A.M. where he would look at him.  He said that he was hopeful that surgery could be avoided but that the decision to operate or not would have to wait until he saw Scott.  Once again Scott was "NPO" and he was frightened because by now he certainly knew what "NPO" meant. 

We bundled Scott up into a jogging suit and his winter coat and hat and drove up to the hospital.  The new nurse was somewhat apprehensive, sitting in the back of the car alone with Scott, who complained of pain in his back as we hit bumps in the roadway.  At the emergency room, Scott kept asking, "Are they going to have to operate on my damn back again?" and I kept saying "Lets just wait and see."  Dr. Carmel arrived with a new pediatric neurology fellow, who had seen Scott briefly during his previous admission in late December, 1987.  Then, Scott was not very talkative and this young doctor had determined that he was no longer neurologically alert.⁴⁶  On this occasion however, Scott was very alert and was happy to see Dr. Carmel.  He greeted him by telling him that he reminded him of the actor, Robert Wagner.  Dr. Carmel did not immediately respond to Scott while he was exploring the open wound on his back and the exposed catheter.  Luckily, he was able to remove it with a sterile tweezers and indicated that surgery would not be necessary.  You would think that Scott would be very happy at the good news of no surgery and no hospitalization.  Instead when Dr. Carmel went to the telephone in the hall to report the good news to Rena, Scott told me that he was upset that Dr. Carmel didn't make a big deal over the fact that Scott knew his middle name [Peter Wagner Carmel]. I got hold of Dr. Carmel outside and relayed the message.  Dr. Carmel came back to Scott and said:

"Well Scott, I told you that you don't have to be admitted and no surgery, don't you feel great - and by the way, how in the dickens did you know my middle name, no less remember it?"

Scott replied "Dad, do I have to tell?" to which Dr. Carmel said "You sure do" at which point Scott said "I had help from my Dad."

The young pediatric neurology fellow was amazed at the conversation between Scott and Dr. Carmel.  He had thought that Scott was no longer aware of his surroundings because of his illness.  This was unfair to Scott because at times his state of alertness was affected by a temporary condition referred to as "ICUitis," meaning that a patient who spent any significant time in the ICU where the lights never went out and regular sleep was impossible, could temporarily lose a realistic sense of place and time.  While it is true that at times Scott really was less neurologically alert,  for example when intercranial pressure built up if the shunt was not functioning properly, often he was simply putting the doctors on.  This was his way of maintaining a residual of control over his life when he knew that he had lost substantial control over it.

JANUARY 29-APRIL 16, 1988

SCOTT'S THIRTEENTH AND LAST HOSPITALIZATION 

In January, 1988, Dr. Carmel had also become concerned about the fact that Scott's brain shunt valve had become exposed behind his ear.  It seems that after the last brain shunt revision, when the stitches were removed, the surgical incision had not healed properly because of a combination of factors, including his poor nutrition and probably pressure on the wound when he slept on that side.  Dr. Carmel was concerned about the possibility of infection and instructed us to bring him in every ten days to be looked at. 

JANUARY 29, 1988

SCOTT IS "SNOOKERED" ON RENA'S BIRTHDAY

On January 29, 1988, Rena's birthday, I took Scott up to the hospital for Dr. Carmel to take a look at him before he went away for ten days.  It being Rena's birthday, she was very apprehensive and we decided that she would stay home.  Scott kept repeating "I know I am being snookered into something."  He had been very alert at home and all of us were looking forward to an evening out at a favorite neighborhood restaurant to celebrate Rena's birthday.  At the hospital, Dr. Carmel looked at the open wound and told me that it should be surgically closed that day to prevent infection.  This was completely unexpected.  I didn't even have a shaving kit with me.  Scott was very upset.  He kept saying "Dad, you promised me that we would be home with 'Motherbird' tonight - I knew I was getting snookered today when you took me to the hospital?"  I didn't even know how to respond because I felt like I too had been "snookered."  When Rena heard the bad news, she was very upset.  She said "I knew something would go wrong today on my birthday."  I had no response.  Little did we know then that Scott would never again come home from the dreaded hospital. 

SCOTT HAS YET ANOTHER SHUNT REVISION 

That night Scott was operated on, the plan being to do a shunt revision, placing the shunt valve closer under Scott's ear to protect it from pressure.  When Dr. Carmel came down from the surgery, he told me that the news was both good and bad.  On the one hand, the bad news was that he had discovered upon commencing the surgery, that Scott's shunt had broken, unknown to us⁴⁷; on the other hand, the good news was that Scott was less shunt dependent now as established from the fact that he was mentally alert despite the fact that his shunt had been broken for some unknown time.  As a practical matter, since Dr. Carmel was going away early the next morning, he decided to externalize the shunt for the ten days until he got back.  Because it was late at night when he realized that the broken shunt catheter had migrated further into Scott's heart, it was decided not to attempt to extricate it by means of a radiological procedure⁴⁸ until the next morning when a more complete staff was around in case of complications or an emergency.  This meant that when he got back, Scott would need another shunt revision, this time in order to internalize the shunt and that Scott would have to be hospitalized during the ten day intervening period. 

None of us were happy about this unexpected turn of events but what could we do about it.  We decided to make Scott's stay in the hospital as pleasant as possible.  There was little for him to do except wait for Dr. Carmel's return.  Unfortunately, because the shunt was externalized, Scott was pretty much confined to his hospital bed because the nursing staff didn't want to move the shunt bag unless absolutely necessary in order to avoid uncontrolled changes in intercranial pressure.  In short, the shunt bag had to stay attached to a pole at the same level as Scott's head so that drainage of his brain fluid remained constant.  Rena and I took turns staying with Scott at the hospital, as usual.  By this time, I had acquired a laptop computer which enabled me to do legal work even at Scott's bedside at the hospital.  I would plug it in or use its rechargeable batteries without an electric cord attached.  I could write affidavits, law memorandums and legal briefs, right there in the hospital.  I could even do Westlaw computer legal research or transfer documents back and forth to my secretary in the office from the hospital by plugging a hospital telephone line into the computer modem.  Not a moment was wasted.  I can remember working on my laptop computer during Scott's CAR scans and even along side of him in the ICU. 

SCOTT "CAN'T REMEMBER WHEN HE HAD SO MUCH FUN"   

One day, Mary, a marvelous physical therapist came by to give Scott physical therapy.  Scott was in a bad mood that day and was giving her a hard time.  He told her, not so politely, to leave him alone and when that didn't work, even resorted to some choice four letter words, in an attempt to intimidate her into leaving.  Mary was used to Scott by now and was determined not only to obtain Scott's cooperation, but also to get him to willingly participate in doing exercises.  All of a sudden, Mary had an idea and left the room only to return shortly with a big beach ball which she placed in Scott's hands and instructed him to throw it.  At first, Scott protested loudly that he couldn't do it.  Then, after one or two tries, soon Scott was vigorously tossing the beach ball to Mary, to me and to the nurse in the room; and he was roaring with laughter as he did it.  Suddenly Scott stopped for a moment and exclaimed "I can't remember having so much fun?" as he blew a kiss to Mary.  We all had tears in our eyes at this very poignant moment. 

Around this time, in early February, 1988, Dalton School Headmaster Gardner Dunnan had sent Scott's contract for the September, 1988-June, 1989 school year.  Although Rena was still talking about Scott's future education, I was not so certain.  Too much was happening.  Every time there was good news, it seemed to be followed by bad news.  There didn't seem to be any let up.  Scott was very fragile.  Yet we both continued to have hope, although admittedly, Rena was more confidant than me.  In any event, Scott beamed and his face broke into a broad smile, when we showed him his Dalton contract for the September, 1987 school year.  Be this time, we had formed the habit of just placing items in front of Scott without editorial comment in order to see his reaction.  If he responded immediately, then we knew that he could see.  Of course, his smiling response to the receipt of the Dalton contract was  heartwarming to us as well because it not only symbolized his continued love of the Dalton community and theirs for him, but also, it confirmed his ability to see, at least that day. 

FEBRUARY, 1988

ANOTHER SHUNT REVISION 

When Dr. Carmel came back on February 8, 1988, he internalized Scott's shunt and the next day, Scott was on the respirator once again which he remained on for some time.  By February 11, 1988, he required two pints of blood and underwent surgery on February 12, 1988.

FEBRUARY 19, 1988

SCOTT ASKS FOR A "COKE CLASSIC WITH ICE" ON HIS LAST DAY AWAKE

By Friday, February 19, 1988, Scott was off the respirator and had improved sufficiently to be transferred back to Babies Hospital from the NIICU.  I came up to the hospital to relieve Rena for the weekend.  She had been there all week.  In the room, Scott was in a good mood and was quite talkative.  The last words I recall him ever saying were:

"Dad, I want a coke classic with ice and a straw, please."  

FEBRUARY 19, 1988 - APRIL 16, 1988

SCOTT REMAINS IN A COMA FOR FIFTY SEVEN DAYS 

No sooner had I brought him his drink, with the doctor's permission of course, he started to choke on it and we had to take it away.  He was so mad and frustrated at just being permitted to suck on ice chips. Then he started to have uncontrollable seizure activity, they put him back on the respirator, gave him a heavy dose of anti-convulsant medicine and took him back to the Pediatric ICU on the ninth floor of Babies Hospital and he never came out of this last coma which lasted fifty-seven days⁴⁹ until he passed away. 

Still, we did not give up hope.  By March 3, 1988, Scott was off the respirator and was back on Babies 11 South in Babies Hospital.  We expected that any day he would come out of the coma, which we hoped had continued so long because of the heavy dosages of phenobarbital that had been given to him to stop the seizure activity, rather than from irreversible brain damage. 

MARCH, 1988

SCOTT'S CONDITION DETERIORATES 

As March went on, Scott would stop breathing from time to time and the nurse would call an "arrest stat"⁵⁰  After one of these episodes occurred on March 28, 1988, Scott was placed back on a respirator and transferred back to the Pediatric ICU.  His condition was getting worse but still we had hope.  Dr. Savitsky performed another tracheostomy on Scott that day to enable him to breathe easier.  

MARCH 28, 1988

WE ARE ASKED TO "PULL THE PLUG" THE THIRD TIME

After the "arrest stat" on March 28, 1988 and after Scott had been placed back on the respirator, a young doctor, specializing in anesthesiology, then temporarily in charge of the Pediatric ICU, insisted upon conferring with Rena and me.⁵¹  Dr. Gold thought that the conference was unnecessary because we had already opted not to take Scott off life support, but this doctor insisted upon speaking with us.  The conference had only been under way for several minutes when it was made crystal clear that she was trying to convince us to take Scott off life support or not engage in any more heroic measures in order to save his life.  Although frankly, I was getting weary and had lost substantial hope of saving Scott's life, Rena was adamant and insisted that all measures be taken to save Scott's life.  I told the doctor that what ever decision we made it would be joint and that I would not overrule Rena or even attempt to convince her to change her mind.  At this point, the doctor, obviously realizing that she had to convince Rena, stated:  

 "Don't you realize how selfish you are being, insisting on prolonging your son's life - you continue to think of him as your child but he is no longer your child, he is now only an organism."  

I was shocked at this cruel insensitivity.  Dr. Gold cringed in the corner of the room and both of us waited for Rena's reaction - would she scratch her or spit at her?  

Rena was surprisingly quite composed as she immediately but curtly responded;  

"Well, Scott may be an organism, but he's my organism and you are reported to be a good technician so please use all of your skills to take care of my organism and keep him alive."

I was so proud of Rena for standing up to this doctor and I was simultaneously ashamed of myself for having been willing earlier that day to "pull the plug" upon the request of the doctors who gave us that choice.    

Up until this time, neither Dr. Gold or Dr. Carmel had told us definitively that Scott was terminal.  This was a topic that we chose not to talk about and I suppose that both Dr. Gold and Dr. Carmel chose not to volunteer information to us concerning this very difficult subject, except on the occasions when other doctors brought the issue up.⁵²  

MARCH 29, 1988

AGAIN WE ARE ASKED TO "PULL THE PLUG" 

The next day, March 29, 1988, I was summoned from my office to attend another meeting at the Pediatric ICU, this time chaired by the doctor, permanently in charge of the ICU.  Dr. Gold sat quietly at my side, together with Scott's ICU nurse and the nurse in charge of the ICU.  This doctor also did not pull any punches and proceeded to tell me that my son was in a vegetative state and that he was taking up bed space that could be used to cure another sick child.  Upon my inquiry however, he could not tell me with any degree of medical certainty whether Scott was in a permanent irreversible coma or whether it was drug induced and could reverse.  Under these circumstances, Rena and I continued to insist upon continued life support for Scott.  We did not appreciate the increasing pressure we were getting from doctors we did not know to end Scott's life.  Neither Rena or I could bear the thought that we might never be able to kiss or touch Scott again after voluntarily bringing his life to an abrupt end.  

Only after Scott's passing, did I learn why these two ICU doctors had put Rena and me under pressure to withdraw life support from Scott.  It seems that there was a section in the Presbyterian Hospital "Policy and Procedure Manual," dated "12/1987," reading:  

"CRITERIA FOR DISCHARGE FROM THE PICU

Patients will be discharged from the PICU upon written orders from the Unit resident after consultation with the attending physician and/or Medical Director.  Discharge of patients from the PICU shall occur when the child is physiologically stable and does not need the level of nursing care delivered in the PICU.

  Specifically, the child shall have:  

1)  Stable heart rate and blood pressure not requiring...vasopressors for the support of blood pressure, or intravenous infusions for the control of hypertension.  

2)  No significant respiratory impairment...  

3)  No imbalance of fluid and electrolytes.  

4)  No requirement for intravenous anticonvulsant to control seizures other than maintenance doses. 

5)  Stable intra-cranial pressure.  

6)  No condition expected to cause acute deterioration in organ function in the immediate future.  
 

Exceptions to the above criteria are recognized in children transferred from the PICU (1)...(2)..., and (3) where support has been withdrawn from a patient following discussion and decision by parents and physician with documentation of this course in the patient's chart." [emphasis supplied]

That day, March 29, 1988, I realized that I was supposed to orally argue an important appeal on March 30, 1988 in the United States Circuit Court of Appeals for the Second Circuit.  After hearing what the doctors had to say, I called the Court at approximately 4:30 P.M. to request an adjournment of the appeal, which under the Court's rules, could only be "for grave reasons" at this late date.  The clerk was very sympathetic but stated that the decision to grant the adjournment could only be made by the three judge panel who had been assigned to hear the oral argument the next day.  She took my telephone number in the ICU and said that she would call me back shortly with their decision.  When she called back minutes later, she was crying on the telephone and asked me not to hold it against her because the judges had declined to grant the adjournment and wanted to know immediately whether the papers would be submitted without oral argument or whether I intended to show up the next day and argue.  I told her to tell them that the decision as to whether I appeared before them the next day would be made by a higher authority then them and would depend upon whether or not my son was alive the next day. 

Dr. Gold wrote to the learned Court, at my request and his letter, dated March 29, 1988, reads as follows:

"Honorable Judges:

This letter is written at the request of David A. Goldstein, Esq., the lawyer for the...Plaintiffs-Appellants, who is the father of my patient, Scott Goldstein, who I have cared for continuously since April, 1977.  

Scott has a malignant central nervous system tumor involving brain and spine.  This has resulted in multiple brain and spinal surgeries, Chemotherapy and Radiotherapy.  

Scott, has been hospitalized numerous times at Columbia Presbyterian Medical Center the latest of which commenced on January 29, 1988 as a result of a serious, life threatening complications.  Yesterday, he suffered a cardiac arrest requiring an emergency tracheostomy and hypotension that required heroic measures.  Scott's illness is terminal and his death could come at any time.  The emergency medical staff conferenced this afternoon and advised the parents that his condition took a turn for the worse and both parents were advised that they should maintain their attendance as their son's condition was critical.  

If there are any questions relative to my comments, please feel free to contact me.  

s/Arnold P. Gold, M.D.

Professor of Clinical Neurology
Professor of Clinical Pediatrics