During the weekends, the staff in the NICU changes and the nurse/doctor teams are more low key. They are in the NICU to maintain the patients and assist if a crisis occurs but they are not always the main team players that I see during the week.  The neurological doctor from the emergency room was doing rounds in the NICU this afternoon. I have not seen him since the very first day they wheeled James off the ambulance from horrible Woodhull Hospital to the bright, clean ER of Bellevue. Never go to Woodhull.

It was nice to see this doctor again, in a strange way, and he updated me on James's condition since I did not know the results of the dye test he had on Friday night. No conclusive results. It appears that he does not have a defect on his temporal bone or that it has self-resolved if it was there earlier. It's too complicated to share with you what this means about the status of his brain.

Full disclosure, I have been self-editing on this blog with regard to the numerous details of James's condition and the depth of the unknowns at this point. I have also been careful not to complain or wallow in my own state of mind--the anxiety and sorrow. I am going to take this opportunity to be a little more like myself and well, bitch a bit.  I hope this only has to happen once. I will get it out of my system and we may have a collective sigh.

James is scheduled to have a tracheotomy tomorrow. He had a breathing tube inserted through his mouth that snakes down into his chest as a measure to keep his air passage clear. He's breathing fine on his own but the doctors have concerns that he does not have the capacity to cough and this tube allows them to suction out phlegm.  However, this was a temporary measure meant to be removed after approximately two weeks. Since James has not stabilized to the point in which the neurological team feels confident enough to allow James to clear his passageway on his own, they will perform the tracheotomy which is a small incision directly into windpipe that will allow them access to clear his passageway if needed. I am actually relieved about the tracheotomy because this means that James will have his mouth back and be free of the uncomfortable tube in his mouth--hooray.

One of his nurses is itching to shave off his beard which will help to keep his face clean!  We joked about this last week when the tracheotomy was discussed.

James is in limbo.  I appreciate that it is difficult to understand what that means, exactly.  He is not progressing as the doctors would like but I do not have enough knowledge to gauge their hesitation in discussing aspects of his condition with me. As I have told James's brothers, I believe the elephant in the room is brain damage.  I understand their various theories and follow-up with my own research to understand the full scope of the impact of surgery on the temporal lobe of the brain and the bacteria that remains that is being treated with antibiotics.  I do not want to share the results of that research with you, just as the doctors do not share the scope of their theories with me, because we cannot know how James will recover and the extent to the damage of his brain at this moment.  If I share my own worst case scenarios from my research (I have always been a worst-case-scenario type of person--blame it on Shakespeare, my eight years working at the United Nations, and now, my work in trusts and estates administration), it would not be productive for anyone.

My first few days in the NICU were completely harrowing. I had doctors look me in the eyes and tell me the seriousness of James's condition.  Imogen had a dream of being chased by death--it found her in the museum and in the classroom--it was that exacting.

It has been overwhelming to think that all the plans we had for our future, for Imogen, for James's art may be over or drastically altered. No trips to Paris to share the perfect eclair with Imogen, as we had promised her.  He may be severely disabled.  This is the self-wallow part of my thoughts today. How do I raise my daughter alone.  The recent outpouring of love and support is wonderful but it will not last forever.  This crisis will recede. People will return to their lives that will keep moving forward while mine has come to an abrupt halt.  I have to plan for middle school, the logistics of taking care of James while maintaining a full time work schedule and being a full time single parent now.  It is daunting and impossible for me to fathom when I am dealing with crisis management in the NICU.

I have pressures regarding my obligations to everyone dependent on me in their life and worry about my longtime income needs (college for Imogen, disability related support for James) and the short-term daily logistics. Imogen had a stomachache this morning and I agonized over what to do--call on a friend or skip the hospital visit.  I am forced to choose between the welfare of my child and that of my husband. I fed Imogen breakfast, took her temperature, allowed her more time and she agreed that she was well enough to come with me to the hospital and do her homework in the waiting room.  The entire time I was imagining James alone in the NICU and the time ticking forward.

I entered the NICU this morning to find a student nurse trying to place feces filled booties back on James's feet.  I was the person to clean his feet and give him a massage, check to make sure the pressure cuffs were placed properly on his legs, and advise the head nurse that new booties will need to be ordered. I have had a crash course in nursing these past two weeks.

I am also keeping a log of all the medications that are flowing into James. James and I have lived a lifestyle in which we did not take medications for anything. Even an Advil for the occasional headache seemed as if we were over-medicating!  The irony is that now his body is filled with chemicals that I write down in my notebook to be sure that nothing is contraindicated as well as to fully understand his treatment process.

Phew. That was a lot to share with you all and I am apologize for the wave of it. 

That should be it, though, as far as my self-pitying woes.  Tomorrow is another day and I will wake up, put my tea kettle on the gas stove, and pick up B the way that James does to give her a reassuring scratch behind the ears. Thank the higher powers out there in the universe that cats do purr.  I place my head against B's purring body and everything is good in the world for those few seconds.

As I know more concrete things about James's condition, I will be sure to share it with you. I think you should all know by now, though, that James will take many months to recover in the hospital.

Time to get ready for the end of the day at the NICU for me.  Another squeeze of the hand and call of commands to James to be sure he's still in there.  Imogen is waiting for me to take her home.

Much love to you all.