Me again.

I met with Dr. B this morning, again in the BMT ward, catching him as he was making rounds.  He was clearly irritated and said he would see me in the ICU; but still he answered my questions.  I told him I had gotten word that Boone's liver was ok.  He looked at me like I had lost my mind.  No the liver is not ok.  I asked about prognosis.  He said the same as it was yesterday.  Then he lightened up a bit and said he had not yet talked to the Neurologist about the MRI results.

When I arrived at the ICU, Boone was the same as when I left; off in Propofol land.  I held his hand, rubbed his arm, and had a good cry.  I put my head down on his bed where my cheek could touch the back of his hand.  The droning of the HEPA filter machine was lulling me to sleep.  I didn't bother to look up when someone came in.  No need to; all nurses, or techs, or housekeepers; a constant steady stream.

Then the Neurologist came in and in a loud commanding voice said "Mr. Gregory, how are you this morning?"  Boone's eyes opened and he almost sat up.  I guess I shrieked louder than I realized, be cause the doctor said "You weren't expecting that were you?"  WT*!!  Hell no! Scared the crap out of me.  But Boone was back in Propofol land in seconds.  The doctor started talking to him more, he gets yes nods, and nos from mild head wobbling as appropriate, so obviously Boone was hearing and understanding.  The neurologist said he was going to order an MRI for Monday morning.  I told him they took him away yesterday and did one, that Dr. B had ordered it.  Dr W. then went out to look at the MRI.

Shortly he returned and said that it didn't really show much that wasn't apparent on the CT scan; he was ordering an EEG.  He squeezed Boone's feet and hands and got Boone to squeeze back, then told him to squeeze my hand, and so he did.  I squeezed back and Boone did too.  Dr. W's assessment was that Boone was a tiny bit better today than yesterday.  He said the Propofol had to be stopped by Dr. O since he was the one that started it.

About 30 minutes later a nurse from Neurology came in to do the EEG.  I asked if I could watch her screen as she did it.  That was fine with her, but she could not answer any questions if I had any.  I asked, is that because you are not allowed or because you don't know?  Not allowed.  She knows a good bit about the scan image of course, but doesn't know the fine points.  She proceeded to hook him up to a couple dozen sensors.  She put a cap on him, marked his head all over with a red pen, then started glueing and taping each one in place.  Just as she finished the the alarm went off on the monitor dripping the Propofol.  The ICU nurse came in to change out the bottles.  The Neurology nurse had her delay the exchange until after the EEG.  She said they wouldn't get any sort of reasonable data if he were on the drug.  I got up then and went around to her monitor.  You could see his brain activity increasing over a period of about a minute, then she said ok looks likes he's clear and started the test.

She would holler across the room at him to open his eyes, the sensors went crazy.  He'd shut his eyes everything would calm down.  She went over and pinched his right big toe, the sensors again did their bouncing about.  "Good, he feels pain" she said. Then she went to squeeze his left big toe, the one that is very sore from the nail falling off.  I didn't say anything, I wanted to see what would happen.  It looked like a 12 on the Richter scale.  Then I told her about the nail.  "Well good"... The test went on for about 15-20 minutes.  By this time Boone was beginning to wake up a bit.  He gagged some because of the ventilator but was calm.  He was looking around the room and saw me standing there trying my best to smile.  She unhooked him and departed.

I decided this might be my only chance to talk to him without him being so drugged.  I stood beside him and asked if he could hear me.  He nodded yes.  I said "You are going the alright, don't worry". He started violently shaking his head no.  I rubbed his head and reassured him he would be fine.  Again he shook his head no as hard as he could and began to cry.  I said "You know I love you, don't you?"  he nodded yes and the tears continued to flow.  He looked at me, and then they started gushing.  Again I told him he would be ok.  Again he was adament , that he was not going to get better.  The ICU nurse came in and restarted the Propofol and his tears stopped.

Dr B came in, said he had spoken with Dr. W about the MRI and there were no signs of infection, still just these spots that looked like old strokes.  He seemed upbeat and maybe things were better, then said he wanted to do a spinal tap to check for bacteria.  I asked him at what point do we throw in the towel.  He paused looked me in the eyes and said Dr S will be rounding tomorrow.  We - not just me- would talk to him about further treatments and possible outcomes.  He said Boone has less than 1% chance now.  Obviously, they want to succeed and try everything, but I'm not so sure a spinal tap is worth the pain and agony to Boone.  If they find a fungal or bacterial infection and the Dr. says he can treat it, ok fine, but to what end?  If the liver is "shot" what does it matter?  Not to mention the infection risk from the procedure is extremely high.  He's on so many anti fungals, anti bacterials, anti virals, and he obviously feels like he's not going to make it, at some point, when do you just say no?  Everything they've tried so far has had a negative reaction.  He can't breathe without the ventilator machine, he can't eat except by IV, and he has zero quality of life.

It's like that old seventies movie They Shoot Horses Don't They?  I wouldn't put my dog through such agony.

Several friends came by to say whatever they felt they needed to say.  I try to step outside to give them privacy.  Most were satisfied if they got any response.  They just wanted him to know they were there and they care deeply for him.

I guess tomorrow morning with Dr. S is going to tell the tale.  I'm not sure I'm ready for what I expect him to say.