I like it when you're here

I arrived at the NICU this morning to find a newly made, empty bed in James's room.  I was shocked. I asked the nurses, none of our regulars, where James was located and received blank looks.  Luckily, my favorite NICU nurse just arrived and she was also surprised by his absence. She checked the computer and confirmed that the team made the decision at 4:00 a.m. to transfer him to the regular hospital floor. No one bothered to call me this morning to inform me of the move.

I located James's room that he shares with a rather obese man--this man had three family members squeezed together on his side of the room, all of them looking at hand held devices with the volume turned up on each one as well as the television blaring. He was not a patient recovering from any neurological surgery, that's for sure! I found James on his bed without a cloth placed under his trachea opening and his leg pressure cuffs unplugged. James was also missing pillows. Welcome to the regular hospital floor. There was a bunch of flowers shoved into a water pitcher which I unwrapped and cut down to size.  I ran out to speak with the floor nurse and she came to the room to review James's case with me.  I asked her to tell me all the meds she was giving to him and she was kind enough to check her computer list with me.  I saw a new drug listed and asked her to identify it.  She did not know. We looked it up together on her computer system and the use was for Parkinson's patients which alarmed me.  She asked if I wanted to speak to the doctor and connected me back downstairs with the NICU team.  I was told the drug was used to "perk" up patients for rehab and was recommended by the rehab team. I agreed to the med for now, especially since everything is riding on James's current response level in order for him to enter the rehab facility.

I had scheduled two visits from friends today but did not have the time to warn them of the transfer. Matt and Sally managed to find their way to us.  Sally arrived first just as Alana, the physical therapist arrived.  Alana asked me if I would be willing to help her try something more difficult for James. I agreed immediately. She wanted him to sit up by the side of the bed. Alana would support his back and I would hold his head in position until he was sitting up.  The moment we placed his legs on the floor and pushed his back up into a sitting position, James's eyes opened wide, almost completely normal. It was stunning.  I was so glad that Sally was able to witness this transformation. James used hand signals to communicate that he was getting dizzy and we placed him back down. Before everyone arrived this morning and I was alone with James, I gave him a pep talk (his eyes were closed and he seemed lost to the world). I told him that he had to work very hard now, he had to put everything into his recovery or we would not make it into rehab and that he had to kick some serious ass.  I reassured him that I would be the coach--just like CCS (Central Coast Section--the big swimming competition in California growing up).  When Alana asked James if he wanted to try again as he lay down tired, eyes closed to regain his strength, he communicated to us with the hand gesture for "yes" an open palm. He took my pep talk to heart too!

Matt brought along an intricate bird drawing made by his wife Deb for James--it is so beautiful!  Matt, Sally and James won studio grants from the Maria Walsh Sharpe Art Foundation and participated in the same session. I thought it was perfect that the three of them were together again this afternoon.

James did not get into his first choice rehab facility because the facility has delayed the review of his application. The social worker was a little baffled by it.  Their response was slightly unusual and the excuse they told her was that they were short on staff.  The social worked advised that we send an application to our second choice which we did today. It's possible he will be transferred soon.

For those that responded so well to my request for visitors--my apologies that I have to place a pause on that at the moment. Since James is now in a regular room and may be transferred at any moment to another facility, I think it would be best to schedule visits at the new facility when we have a better understanding of how his day will unfold and how he will be feeling. James was very exhausted after our activity this morning although, he was listening to Matt, Sally and I talk to one another (and Matt's excellent choice of Ethiopian piano music, bravo!).

After a chaotic day, I am glad to be home and getting reading for bed.  Imogen and I had planned to spend part of Friday together (I had thought we would spend half the day at the hospital and then, share the later afternoon since it is her last day of Spring Break). Alas, I have to be available to meet with the social worker tomorrow and if a transfer does occur, I want to be able to go with James in the ambulance.

I am looking forward to the goal of rehab and will sigh with relief once we start the next part of our story there.