Pauline here.

I just don't know what to say.

Boone was taken off the respirator today, put on regular hose O2, and wonderfully taken off the Propofol.  When I was having to leave he was just coming around.  His sisters were both there with him.  Reports are good that he is alert, and presumably comfortable.

It's so hard to get any sort of communications through in the ICU. I believe that floor is nothing but different ICU units; you can't get a decent signal unless you go outside.  If we are lucky, we might get a single bar for a few seconds.

Stella, I was totally wrong in my assessment of his violent head shaking.  I guess that's what I would have been trying to say if it were me.  Today when he was able to nod responses, I asked him if he was giving up.

His eyes opened wide, and a puzzled NO shake came forth.  So what do I know?  Apparently not my husband of 36 years.  When I said everything would be ok, he nodded yes.

He then tried to say 3 words to me.  I repeated what I thought he was mouthing.  No.  Tried several times but I just could not understand.  He looked like it was important.  His hands are (hopefully were by now) restrained...Oh my...thats what he was mouthing: Un Tie Me....oh no!!

The curtain fell and time passed.....

After so many texts and a phone call, I found out Dr. S arrived shortly after I had to leave.  Ann was straightening up Boone's covers and Dr. S saw he was in restraints. He immediately ordered them off.  There was no need for them because Boone is definitely aware of what's going on and who all is in the room and he is not going to attack his tubing.

He was taken off the regular O2, and did fine.

The Infectious Disease Dr came in and went over Boone from head to toe and said she saw no indication of any infection.  She wants the MRI of his brain to be repeated, because she said he was clearly moving during the scan and he was so sedated they weren't going to see anything anyway.

So.... why didn't the Neurologist notice this??

Ann said apparently the Neurologist had been unaware that the seizure happened during the photopheresis procedure.  Seizures are a known side effect of the procedure.  Maybe there's just too many doctors that aren't talking together but only getting snippets of information.  Boone seems to always have his episodes on Friday and this time close to shift change.  Not good timing.

The ID Dr also over ruled the talk about doing a spinal tap to see if they can isolate the fungus or bacteria that appears to be causing all these bad reactions.   It made no sense to me either, or Ann.  So glad she was there to query the Dr. about it.

In talking to Ann, her memory of when Boone was hit by a car at age 9 on the head, sounds like it is very close to where Dr. W said the old stroke was appearing.  Could it just be the old bumper on the noggin?

The ID Dr. is supposed to round in the morning.  Hopefully I can catch her and Dr S.  

It's time to get everyone in one room and have a chat about what's really going on.  To me, and again what do I know, it seems the liver is the big issue right now.  He is incredibly yellow.  His tears looked yellow to me.  His urine is dark orange.  His skin is between dijon and yellow mustard.  We know he's had high bilirubin levels for a while.

Hopefully Boone will be back on the BMT ward tomorrow.  He seems to be back to where he was Friday before all this upset.  Wish I could call him...but his phone, lap top, and pad are all locked up in someone's office on the ward for safe keeping.