Last night two young oncologists (Dr. Tao and a
man whose name is as long as any name I have ever seen and irreproducible) told me that
B was still having seizures as detected by the EEG monitoring device that is attached to
her all the time as part of the neurosurvaillance procedure. In the seizure mode, several
neurons near the the tumor are firing in synchrony. The fear is that they could entrain the whole brain in what is (or used to be) known as a grand mal seizure. This is serious stuff
and they are trying to halt the seizure before that happens. Since the keppra and ativan are not completely successful, the seizure team wishes to use phenobarbital in an attempt to quiet the remaining coherent oscillations. This has the risk of stopping B's breathing. If that happens, they'll need to intubate to force her to breathe. I was asked to approve the procedure both as to the use of pheno and intubation, if necessary. At my request, they greed to stay with the ativan until Thursday morning.
I had sent off few notes during the hectic Wednesday in S-K and went home having eaten in their cafeteria. I answered some emails and went to bed. Early next morning, I
checked the email and found a letter from Sara at NWU Med School. She reported this:
We have talked with a Chicago friend who is a neurologist. His specialty is not oncology,
but in his own experience, patients on ORAL phenorbital show improvement within 48
hours, and do not need intubation. It is the IV treatment with much higher doses that
carries the risk that breathing might stop. Is there a chance to use oral phenorbital?
Or do the doctors at Sloan-Kettering think that it is really urgent to get her out of this
subthreshold oscillatory state, and that the IV delivery of a high dose is the only effective
way to do so? It seems that the oral treatment, if feasible, would be less of a trauma. But
only the local doctors can evaluate the urgency factor."
On reading this, I immediately tried to phone Dr. Tao, who was on night duty, to discuss
this with her and reached her at the nurses' station at 6:00. I have trouble hearing what
Dr. T. says even when she is in front of me. On the phone, I heard her less well so I won't
try to repeat what I thought she said for fear of misrepresenting her statements. But the
upshot was that the plan was still in place.
I went to the Beth Israel clinic for its eight o'clock opening to have my wrist re-bandaged
and got to S-K by nine. (It seems weird to go to a clinic for minor attention and then to
a hospital for a visit when the hospital could easily do it all.) B's speech was somewhat
improved, though it was not clear what she was trying to say much of the time. The
surprise to me was that they had not yet administered the phenobarbital. The nurse on
duty had no instructions about this.
Just before lunch time, Dr. Omuro appeared on rounds with a very few senior looking
associates. He said that the family had refused phenobarbital so they had not administered it. I told him that I had accepted its use but had merely asked for a delay till morning.
He said that in that case they would proceed. I told him of the news from Northwestern
and he said of course they were going to do oral pheno. It was a
flying visit but I suppose
that we had covered the essentials.
Soon after the departure of the oncology team, a doctor whom we had seen once before
appeared and tried to get Barbara to sing Happy Birthday. She said she had missed the
group on rounds and would try to catch them up. I asked whether I could first ask an
indelicate question. She agreed and I asked how the confusion about what I had decided
about pheno could have arisen and was it not a serious problem. She said it was a simple
miscommunication and nothing serious. She departed saying that she would return soon
and seven hours later has still not been seen. I begin to realize that various unanticipated
things must arise in such places and many of them involve very serious issues.
It is very
difficult for a layman to judge the importance of various issues, especially one who works
on chaos or turbulence where small causes have big effects.
The doctor with the long name came and said that since B did not have seizures during
the night it was not clear that they would need to administer the pheno. He said he would
check with the two senior people in charge. He returned and said that it seemed that if
they did use pheno, it might well be oral. They said they would authorize a puree meal
and, if she ate it, she would be cleared for oral pheno. So I ordered potato leek soup, apple
sauce, chocolate ice cream and apple juice and she ate it all for lunch. She even asked for
more apple sauce. A nurse fed her but she took over in the middle of the ice cream. At
dinner time another nurse ordered a pureed meal and I fed her some of it and the rest she
ate (with gusto) herself. So swallowing is no problem and oral phenobarbital is on schedule
for 10:00 when it will also help her sleep.
