I like it when you're here

James has been accepted by Mt. Sinai rehabilitation hospital and will be transferred on Monday. This is a huge relief to me and the beginning of the difficult work ahead for both of us. 

I thought it might be helpful to understand what rehabilitation means in this context.  There are two types of rehabilitation for patients such as James that have experienced severe brain trauma and are recovering after a debilitating illness: acute and subacute.  Acute rehabilitation provides an array of recovery services such as physical, occupational, and speech therapies as well as psychiatric care in a hospital setting.  Subacute is less intensive and usually occurs in a skilled nursing facility (i.e. a nursing home). James is receiving acute rehabilitation.  My concern was that he would be transferred to a skilled nursing facility which is more of a care-giving setting rather than rigorous rehabilitation. Hence, my relief that he was accepted by Mt. Sinai and will receive the treatment required for his recovery.

James has been wasted by this illness.  He has lost much of his muscle control, he has a feeding tube inserted in his stomach and a tube in his throat. He cannot speak or eat on his own because of the tube in his throat.  His left side has very little movement and may be permanently damaged.  I am stating this simply so that all those that love James understand the depth of the rehabilitation that is required. It will be months of work ahead of us and unfortunately, the insurance company places a restriction of having to reassess James every two weeks. I have been receiving messages of support from friends and advice based on personal experiences.  I am grateful for all of it. I hope this clarifies the severity of James's rehabilitation and provides a simple picture of how the rehabilitation will unfold, as opposed to caregiving to keep him comfortable in his new, disabled state.

I do not know the exact variety of rehabilitation he will receive at Mt. Sinai, what the setting will be, and how his schedule will be in this new environment. It was my understanding that he would have at least three hours of rehab every day, five days a week.  Seeing his exhaustion from the very short sessions we have had in the NICU and in his room for the past two days, it's difficult for me to imagine how that will work! 

My plan is to return to work and insert James's rehab schedule into my own office hours.  It is unclear if that is feasible and I may need to take a leave of absence from the office for a period of time. It is daunting to me to wonder how this will all sort out and become routine but I imagine it will.

I had a nice day with James today.  We had a lively session with the occupational therapist.  His NICU doctor came in for a visit while we were working with James who was sitting up, trying to lift his head.  The doctor asked, "How are you doing James?" and James lifted his face, eyes wide open and raised his eyebrows in sarcasm as if to say, "How the hell do you think I am doing?" and the doctor laughed saying, "Sorry James, stupid question!"

James also gestured toward his stomach.  He was pulling at his dressing gown as if to take it off.  It dawned on me that he might not know about his feeding tube.  I asked him, "Do you know that you had a feeding tube inserted directly into your stomach?"  He shook his head no. This broke my heart a bit.  I explained that he had a tube in his nose originally and that it was removed and inserted directly into his stomach.  I asked him if he understood me and he nodded yes.  It was a big day for him--he is realizing the depth of his own disability, pointing to parts of his body and wanting answers.

I do not want to leave him alone here, without the NICU nurses to care for him.  There has not been much activity with regard to nursing care and they know that I am here.  I will make sure to check in on them as I leave today. I had a bit of a run in with one of the nurses this morning. I think I lost a little patience with the new setting. I have to take a deep breath now. Only two more days and James will be in a rehab!

Love to you all.