Pauline here.  Ok , I guess it's time to come out of the closet; Kathi here.  I used "Pauline" in the blog we wrote about my Dad.  I was afraid of the Interwebz, and thought it might be more private.  Yeah right.  Pauline was my Mother's name and is my middle name.

Early this morning I dropped by the Clinic to leave some paperwork and request a meeting with Dr. S.
They said they would text him with a request to call me.

I went to the ICU to see Boone.  His color is better, only mildly yellow.  His beard and 'stash are growing out pretty fast.  The head hair is being slower, but it is coming back too.  He was sleeping for the most part so I put my head down on the bed and tried to have a little cat nap.

My phone vibrated, but the call failed.  It was a number I didn't have in my contacts.  So I left the ICU, went to the main Atrium, and called.  It was the clinic, Dr. S. got the message and will call.  I explained that in the ICU, I can't get a cell signal anywhere on that floor.  Nurse C said, to come on down to the clinic, Dr. S. was there seeing outpatients.

When I arrived they ushered me back to the infusion room.  A large room with 4-5 chairs for patients to sit and get infused.  I took a seat, and as soon as Dr. S. finished talking to the patient in the next room he came in to talk to me.  He scooted his chair up close, knees to knees.  I wanted to know where we are what's really going on, and why is there so much conflicting information.

He keeps total eye contact with you when you are talking.  He said Boone is in a bad place right now.  The spinal tap, or lumbar puncture, is to determine if there is a fungal or bacterial infection in his brain, or another type of Leukemia that sometimes can pop up in the brain.  He clearly did not associate the seizure with the photopheresis.  He said there appears to be something happening there and we need to find out what's going on.  I told him Boone had been hit by a car at age 9 and had a scar on his head in the area they are seeing these "old clots".  He just shook his head no.  That's not it.

We discussed all the doctors and all the comments they've made that just seem strange and confusing. He in no way denied anything I said.  What he told me was first of all, he is in charge.  There is no other Dr. including Dr. H the ID doc that can over rule or change his orders.  (Yeah!)  He acknowledged that it looks like they are not communicating, and it's difficult because they can never all be in the same room at the same time.  It's a 24 shift of doctors and rotations, so people can have days off.  I totally get that.  He said they are in close communication and he would make it clear to them who was in charge and to not make off hand remarks about something.  Each, he said, have their own bedside manner and most dumb down what they say to the families.  Agreed. They dumb it down so much it doesn't make sense.  And that any formal communications to the family would be from Dr. S. to me directly.  I think I love this man.  When we finished our talk, I felt like it's clear Dr. S. was doing everything he could to help Boone.  There is always the future unknown to deal with, but he was in no way confused or indecisive about the corse to be taken.

He said he would see me in the ICU when he made rounds.  I explained to him I had to leave by 12:30 because I had friends coming to the condo to help me get the rest of our stuff out.  He promised me he would be there in time to see me before I had to go.

Back up in the ICU, I was telling Boone what happened, and said Dr S. had promised to be by in time for me to be here.  The nurse in the room laughed out loud.

Boone was awake and alert and making his normal smart ass remarks, in between short rest periods.  Ann and I were making another nurse laugh from the stories we were telling.  It was a good morning.

Our friend Mike came in to visit.  He was there to help me with the moving.  Then Dr. S. and his entourage entered the room.  It was 12:15.  He basically had the same talk with Boone, Ann, Mike, and me that we had earlier.  He's in charge.  Boone's in a tough spot.  He's gonna fix it if he can.  All communications are going to be from him to me or Boone directly.

He poked around on Boone, did the normal check up.  As he was leaving he said he wanted the catheter removed, mostly because it's exercise for Boone to have to deal with peeing.  The lumbar puncture was going to happen, and hopefully Boone will be back on the ward tomorrow, blogging instead of me.