I entered the NICU this morning to see James with his eyes open, sweating profusely, and breathing very quickly with the nurse and doctor on either side of his bed. The various alarms were sounding but the doctor was smiling. He said, "James is awake and just swatted the nurse's hand away!"  She was trying to suction out his breathing tube for the last time before his tracheotomy and he was not having it.  The doctor asked me to please calm him down, so I placed a cold hand on James's forehead, placed the other hand on his chest, looked him in the eyes and told him to match my breath. Eventually, he calmed down, the alarms switched off, and he closed his eyes to rest.

By the time the respiratory team came by to check on him, he had receded into himself a bit. The NICU doctor told them excitedly that James was very responsive but of course, by the time they assessed him, he was out like a light. It was slightly humorous reminding me of my father's favorite cartoon about a dancing and singing frog that is only witnessed in action with his talents by one man.

James had a successful tracheotomy.  He has his face back, albeit, looking a little thinner.  For the past two weeks he has had a tube snaking out of his mouth with a guard over his lips kept in place by two large clamps that covered most of his face, one on each side of his cheeks. He has always been super sensitive about his throat especially the sensation of anything blocking his passage way. I think every time he became stronger over the past few days, he would face a set-back from the exhaustion of fighting the clearing of his windpipe. I am hoping this will enhance his recovery by reserving his energy.

The entire team entered the room after his surgery to speak with me. They wanted to discuss what they anticipate will happen in the coming week.  It has been difficult for me to discuss any concrete facts with them regarding the possible damage to James's brain or the severity of the disabilities he will face because whenever I brought it up, they were evasive or would say it was too early to judge. I thought it was a way of avoiding my questions.  Today, it dawned on me, that they truly cannot make that assessment. The NICU doctors are focused on crisis management, on keeping the patient alive. Of course, I knew this fact but it did not truly hit me until this afternoon's discussion of James's current status.

At the time I was studying massage therapy, I decided I wanted to focus on the treatment of cancer patients. I took a seminar at Memorial Sloan Kettering Cancer Center about the massage protocol for patients receiving chemotherapy and other intensive treatments. I heard lectures from oncologists and their patients receiving treatment. What struck me the most was the admission by oncologists about the difficulty they had on seeing the entire patient. They would often focus in on the cancer, the cells themselves, and the patient was lost. The doctors looked toward the massage therapists practicing at Sloan Kettering to assist them to open up their practice to include the whole person, rather than focus on only the rogue cells.  My realization today was that the NICU doctors are similar to the oncologists--they are centered on solving the puzzle of the failing patient and how to keep that person alive.  How the story progresses after the NICU is someone else's tale.

That is not to say that they do not have theories of their own about James's progress but they are keeping that to themselves (well, all except the NICU floor doctor who is invested in James's recovery in a way I find truly endearing--he's been positive throughout these two weeks and counting).

The doctors believe James will be in the NICU for another week or two. He has to have another procedure to place a feeding tube in his stomach. I know, it seems drastic and difficult to imagine, but these are productive steps to heal him. 

I had my first half day at the office, reviewing what was done in my absence and charting out matters that need to be addressed. It felt slightly strange. I actually feel more at home in the NICU now. It felt odd to leave the womb of hospital and step back into my prior life. I feel a bit of a gulf between the intimacy of my life with James in his hospital room and the rest of the regular world as it existed for me only a little over two weeks ago.  I feel slightly contagious, as if I have a miasma of suffering that others instinctively recoil from despite their offers of sympathy.

The best question today came from Maria, a secretary in the trusts and estates department. She asked me how my cat B was doing!  Such a perfect question, I love Maria.

My sister-in-law Janet called while I was writing this so I took a break to speak with her about my day and thoughts about my daughter Imogen.  I am ever so grateful for having her in my life.

Imogen just yelled, "Mom shower."  I need to go, ran out of time today.  I am looking up now when I have to pass under the trees by the hospital close to where I was pooped upon by pigeons. It has become part of my morning walk, meaning, James's brothers Chris and Jeff are with me every morning in spirit as I avoid the birds.  I can hear both of them laughing and it makes it easier to face the day. 

Oh, one last thing.  Pauline Larkin, who has been an insane support system for Imogen and me, told me a great story about her son Max making marshmallows.  It really made me laugh and feel good during an impossible night at the NICU after James's second surgery. I bought a package of perfectly square marshmallows on my way home from Grand Central that I meant to give to her tonight. I completely forgot once I was in their house to pick up Imogen. The moment I saw the marshmallows at the shop, I felt instantly happy. Pauline has given me the gift of marshmallows and happiness for the rest of my life!  Thank you!