Climbing up the stairs

James walked in the robot suit for two loops around the hospital corridors today--over 600 steps--I missed it yet again. I entered his room and he looked absolutely refreshed despite all the work he did this afternoon in physical therapy--one of the nurses shaved off his beard!  He lost weight from his illness and that includes his over-50 face jowls.  It appears as if James had a face lift, albeit, employing the rather extreme, brain-abscess-intensive-care technique.  I would not recommend it as the best choice for cosmetic transformation.

He is also maintaining an almost constant smile now.  Love it!  Just a few weeks ago, his doctor was concerned about his flat facade--a somewhat expressionless James--it worried me too. He did not express happiness or sorrow--it was disturbing. I am grateful for his exaggerated, comic, pushed-out lower lip baby pout face too!

We have been contemplating how James will navigate the stairs up to our apartment--30 steps--Imogen counted them.  Imogen and I used to pretend sleep in bed together on the nights that James would practice late with his band.  We knew a verbal scolding would be at hand if James found us awake so if we heard the gate slam downstairs, Imogen and I would turn off the lights, jump into bed, and stifle our giggles. 

I would hear James climb the stairs, the creak of the wood with each step, and then, the clump, clump of his boots being pushed off and the key turning in the door.  Our cat B would run into the hallway to tangle up beneath his legs, meowing in the hopes of receiving a late night snack. We would patiently wait as James brushed his teeth and would give B a bit of canned food (Imogen would whisper, "B's tricked him again--I already fed her!"). James would do all this in the dark.  Then, he would walk into our room and this was the best part for Imogen and me.  As Imogen has grown up, it's difficult for James to decipher who is who in the bed and we would lie perfectly quiet to see which one of us James would attempt to carry in his arms to bed. Inevitably, either Imogen or I would laugh and James would flick on the light.

Imogen liked to hop on his back and then, they would stop in front of the mirror so Imogen could see herself stretched out like a leopard in a tree on James's long back.  He would toss her into bed and tell her a quick story until she fell asleep.

I am calculating how to manage those stairs so that James will be able to come home to us. I spoke with the occupational therapist and he was thinking James would be able to do it if there were two handrails. We have only one and a faux sconce rail embedded on the other side wall. I was thinking, perhaps we could screw in a rail to the embedded wood but that would involve informing the landlord, investigating if the sconce rail is strong enough to hold an attached rail, and receiving permission to install it. Any friends out there that would be able to help us envision a compromise that the landlord might accept, I would greatly appreciate your advice.

James had a brief occupational therapy stretch session for his arms while seated in his chair late in the day and there was an even exhalation sound that I thought was coming from his bed (it automatically adjusts to weight placed upon it and I was perched on the edge) or from the suction machine on the wall which continues to hiss, even when it is not in use.  The source of the sound was the air flowing through the bandage of his trach hole. We joked that he was his own wind instrument!  The hole should close on it's own in the next few days. James ate some yogurt this morning with his speech therapist.  He's slowly returning to a more normal way of being.

Later tonight, he will have an MRI scan with contrast dye to receive a clearer image of his brain.  It was recommended by the infectious disease team at Mt. Sinai and I am relieved it was scheduled so quickly.  I think they took my concerns seriously. Now, I have to convince them that James should have dental work done as soon as possible. That was moved off their treatment schedule to post-acute rehab but I would like to attempt to at least schedule an appointment for as soon as he's discharged while he is still at Mt. Sinai. I will have to wait for the results of tonight's MRI.  I am keeping my fingers crossed that they do not discover any complications.

As I was getting ready to leave, James was tucked in his bed, feeling slightly anxious about the MRI.  I leaned over to kiss him goodbye and he said, "I wish you could stay right here, next to me all night."  I sighed, confessing that I have thought the same thing almost every day when I have to leave him.  James told me that during the night, he's careful not to roll over or move around too much so as not to wake me on my side of the bed but then, he wakes up and realizes that I am not actually there. It took everything I had in me not to cry.

I was taking deep breaths and trying to let go of my sadness when I took the elevator down and then, once on the street, I recognized James's friend Charles walking toward me. It pushed all my sorrow right out seeing Charles's face look up, see me, and smile.  I know James was feeling melancholy at my departure and now, Charles will be there to move that away.

A sweet friend of ours, Nicole Devereaux, just sent me a photograph from the PS34 art fundraising party this evening letting me know that they raised a glass to James's health. He would have loved to be there. Thank you Nicole for sharing the evening with James!

Everyone have positive thoughts tonight for a non-spooky MRI result!  I hope that the dye exposes nothing but the healing taking place in James's brain! I do not want any more metaphorical hikes up mountains--we have real stairs to tackle now!