After a less responsive day in the NICU yesterday and the melancholic subway ride home last night among the St. Patrick's Day revelers, I was feeling slightly apprehensive about another day of disappointment.  I have a routine every morning of making a thermos of tea to bring along with my breakfast and unpacking first, the moment I arrive.  I wash my hands and then, greet James by holding his hand, leaning forward, and saying, "Good morning Jim!" 

This morning he opened both eyes!  Sustained eye contact!  I nearly pulled back with shock because it was unexpected.  I had to ask him, "Do you know who I am?" and he squeezed my hand ridiculously hard and continued to maintain eye contact with me until it became too exhausting for him.  I was pretty giddy.  Just at that moment, the doctor walked by and said "Yes!  He opened his eyes for me too, very responsive this morning!"

The doctors have taken out one of the drains that was in his brain because it's become unnecessary.  James did receive a new intravenous line in his neck to receive sodium treatment. His sodium levels are fine but since his body is very dependent now on having the appropriate amount of sodium in his system, to maintain that balance, they are boosting his intake.  I immediately did a little research online regarding how sodium works in the body and basically, it regulates the fluid balance in your body, maintains blood pressure, and supports the work of the nerves and muscles--all important aspects of James's recovery process. A lack of sodium may cause inflammation and that is what we would like to avoid, especially in his brain.

The doctor also mentioned that James's lack of response may have been tied to his sodium levels and its relation to inflammation. 

I have to say how invaluable the internet has been throughout this process. I am able to read clinical papers online and have access to such incredible medical information.  I even contributed to James's case today by mentioning to the doctor about my quick self-tutorial regarding sodium on the web and explaining that I understood why it's important to maintain his levels, especially since he is talking medications that may effect his sodium levels, such as his anti-seizure medication. The doctor turned to me and said the name of the med (which I have already forgotten--if I do not write it down, it's difficult to keep track) and asked,"Oh, does that have an effect on sodium?" and I laughed and said, "Gee, I don't know, does it?"  He scratched his chin and said, "We did not consider that, I'll have to think about that one." 

Since it is exhausting for James to keep his eyes open, we have to work with his other senses. Although he's a painter, music is an integral part of not only his art practice but his life.  The first date I went on with James as a teenager, he picked me up in his car, music blasting, and we drove from the valley suburb in which we lived, over the mountain, to Santa Cruz--the beach!  It was 1984 and David Bowie's Let's Dance album was extremely popular but that's not the Bowie that James was listening to--it was the early albums.  He knew all the lyrics to songs I had never heard before and he had no shame to sing them at the top of his lungs, sometimes with a British accent. First date.

Today I played a medley of songs that have meaning for us and are just plain fun. The Who, Bob Dylan and of course, Joni Mitchell singing California. If you do not know this song, well, you need to listen to it right now, for James, google it and watch her sing it live when she was young. See if you do not cry too. Robert held James's hand and James actually squeezed in time to the music and wiggled his toes.

A good friend, Deb Davidovits sent me one of her Spotify playlists by email (I use the free online player on James's laptop) and was able to play that music for James as well.  If anyone has a favorite song, email it to me and I will share it with James.  I also played music from our musician friends. Shout out to Stephen Ulrich of Big Lazy and Jon Philpot of Bear in Heaven.  We cranked it in the NICU!  Stephen has told a story of a Big Lazy fan that was allowed out of prison for the weekends but had to return for the week. He would listen to Big Lazy on the way back to jail.  Stephen joked, music to drive back to prison by--well, now, it's also music to arise to consciousness by!

Love out to all you music and art lovers!