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 gruelling 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:

"Vince, I have a new name for you -
Traitor Vince, your prices are insane."*

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 stuff** 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.

---