Where am I supposed to be?

James had another exhausting day in rehab.  I had no idea it was Friday the 13th until I heard a news presenter mention it tonight on PBS.  I wish I could have shared that with James--he's quite superstitious.

James was working with his speech therapist when I arrived without his glasses on and writing illegibly on a white board. We established yesterday that writing with a fat white board pen on a smeary surface was not exactly the best way to go but the speech therapist attempted to justify the exercise by saying that most people have an easier time with a fatter pen. I placed glasses on his face, replaced the white board with pen and paper, told the speech therapist that James needs his glasses to see (they are bifocals) and James wrote, "What is happening now?"  Good question, obviously, the speech therapist was having a hard time of it.

I explained to James that he is having therapy with different people to achieve various goals. I paused and read the speech therapist's name tag because I had forgotten her name, then said, "Siobhan is working with you to improve your speech and swallowing."  James nodded. Siobhan tried to add to my explanation by telling James that he had OT earlier in the morning but that was sort of a pointless reference for him since there is no conceivable way he understands what "OT" even means!  I reviewed the other therapeutic modalities with James by connecting the names of people working with him so that he would understand that OT meant Jack and occupational therapy (combing your hair, washing your hands) and PT means physical therapy with Nehal and Olivia--the wonder women that make you stand up and stretch your chest.  It was a revelation to him.

James wrote "Good, when do things progress?"  Interesting question.  I looked at the Siobhan but she was quiet. I forged ahead and explained to him that he is in the early stages of his rehabilitation--the therapists, doctors and nurses are making an assessment of his condition and that we all hope that he continues to move forward in his improvement but that there is no set timeline.  Siobhan nodded in agreement.  That was the end of his speech therapy for the day. She mentioned that we could place a chemical dye in his mouth to confirm the amount of saliva he is swallowing and then, immediately backed away from that idea because it may not really prove anything and be quite messy. I have my doubts about Siobhan but she does have an in depth understanding of the physiology of James's mouth, throat, vocal chords and swallowing muscles. We need her expertise as part of the team so I am trying not to pass judgment this early on in the process. Plus, she cleaned out his mouth the first day with such patience and care that I know she is doing her best.

James's PT Olivia called him a superstar today. She was with him the first day, assisting Nehal but was not around yesterday.  So, after having missed a day, she was very excited to see how much he had improved in only one day. She was able to get him standing up with support and straining to hold up his head--tall and long.  He has started to initiate action through his arms, trunk and legs which he could not do two days ago.  She was very encouraging and James likes her positivity.  She compared his muscle tone to that of astronauts--she explained that lying in bed for a month was similar to the impact of the lack of gravity in space to a human body. That was such a perfect concrete image to describe James's loss of muscle tone in a manner that he could completely grasp, immediately. We recently saw a documentary on PBS regarding the space station and how the lack of gravity was so hard on the human body and I know that James recalls the image of the astronauts being pulled from the space capsule like limp dolls. Every muscle that the PTs excite will help James to reestablish the connection in his brain to his muscles and reactivate those motor functions.

Each PT has their own personality. Nehal is quiet, serious and constantly searching for the solution to the puzzle of James's loss of function. She does not want the process clouded with knowing too much about the patient's personal life. Olivia is the opposite--she wants to know as much as possible.  Since Nehal had the day off today and another floater PT was helping, Olivia was able to ask me about James and myself which only got her more excited.  Since James is a social person, I think having this day with Olivia was helpful to motivate him and create a connection between the pain he is suffering and why he is feeling it--and also tie it to a larger purpose (they are not simply torturing him for fun). Olivia helped him to understand that he is in rehabilitation.

Olivia was so gung-ho that she wanted to show the doctor--who stopped by the gym to inform us that he was ready to change James's tracheostomy tube--how James was able to stand up. She placed James on the parallel bars, a task he has not even tried yet.  She had another PT stand behind him and she stood in front and had James not only stand but walk two steps. It was pretty insane.  James sat down with a tired thump in his chair afterward and Doris (the PT gym assistant) waved all the women over to James. They were all giggling and then, Doris whispered in James's ear.  He blew me a kiss with his lips--first time he was able to make that movement with his mouth.

They wheeled him into his room and the doctor "stepped down" his tracheostomy tube.  The progression of the trach tube is to replace it by reducing it in size, which allows more room in the patient's throat to breath and swallow, and eventually, taking it out completely. The doctor felt James was ready for a smaller tube which has a cap on it to allow speech.  James's doctor was training a resident on the procedure so I thought, great, I will see how it's done with an explanation!  He asked me if I would be comfortable seeing the procedure because James will cough and suffer a bit.  I said, "Oh, I have seen it all in the NICU." The doctor and resident looked surprised and said, "Oh, are you working in neonatal intensive care?"  I thought that was pretty funny. I explained that I spent a month in the neurological intensive care unit with James. The doctor was slightly embarrassed and said, "Yes, of course!" I had met earlier in the day with the doctor and we discussed the possible side effects of James's medication and the source of a passing tremor that is presenting on James's right arm and face.

James had quite a day.  After the session with the speech therapist and before the amazing PT session with Olivia, we had an hour of downtime.  James was still in that zone of not quite understanding he was in rehab.  He was resting for a bit but then opened his eyes and gestured for the pen and paper.  He wrote, "Where am I supposed to be?"  Isn't that a question for the ages?  I think he was baffled by the fact that he was just sitting in his chair, with nothing to do, and time was passing. I told him that he would spend a great deal of time in that chair and that his job was to mentally prepare for the next challenge or to snooze.  He did not have to do anything.  He is suffering and does not particularly want to listen to music or hear me talk--he is in a strange time zone.

A few minutes went by in which we sat together in silence and then, a PT floater named Bill came in to give James a stretch in his legs. It was pretty magical. Male energy is good.

I also met with the psychologist again and was introduced to James's dietitian.  Everyone is telling me how important it is that I am at part of the rehabilitation process.  They do warn me that I should be careful with my time away from the office but each person I spoke with today made it apparent to me in one way or another that I am needed at Mt. Sinai with the team.  I was thinking that I would now get a little break and room to breathe but the team is sending me mixed messages.  The psychologist told me today that what has happened to James is not a small thing and that people around me need to understand how monumental this has been not only for James but for me too.  She said I should spend as much time with James as possible.

Heavy sigh on my part because I planned to return to the office on Monday.

Where am I supposed to be? James sure knows how to communicate the truth.