Wednesday, June 22, 2011

My Little Darlin, PT day 30, by David

Jan was moved out of the CCU yesterday into a step down unit.  I have not left her side since.  She has increasing activity of her right arm.  It seems to be a mostly uncontrolled flinging motion.   She does get her hand to her face and performs an intentional rubbing motion.  This has developed since yesterday and it is an improvement.  When I hold her hand she will squeeze mine if I squeeze hers.  She will not squeeze it on voice command.  She does hear because she opens her eyes and turns to me when I speak.  I read to her and she seems to listen.  She will follow me with her gaze.  She will give a gentle spontaneous squeeze of her L hand.  Since the left arm is clearly lagging behind the other extremities there is concern for a brachial plexus injury (injury of the nerves to the arm after they have exited from the spine).  She clearly moves both legs.  She still does not express any emotions with eye contact.

There is a chair in her room that elongates to allow me to stretch out at night.  I stayed the night and will leave only if someone I know stays in my place.  I can not let myself leave for long.  This will be more difficult on me than when she was in intensive care.  At least in the CCU she was under very the very close watchful eye of a nurse who had only one or two patients to tend.  On this step down unit the nurse to patient ratio is much less.  In her neurological and physical state and in my psychological state I will not leave her alone.  Last night I do not think she slept at all.  She easily could have her day night pattern confused as she is resting while I type this at 6 am.  Anyway a hospital is no place to get rest.  She must be turned every two hours.  Compulsive me was doing that about every hour when we first moved in but I was likely agitating her.  Through the night the nursing staff came in to do this like clockwork.  I know because I had my two hour timer going on my watch.  They were a little late the first time and I had done it just before they came in.  She also coughs periodically through the night.  You can hear mucous build up that she tries to cough out through her tracheostomy.  I can not let her sit there breathing with the sound of this, I fear it is impeding her breathing so I suction her out regularly.  She is on 30% oxygen.  The delivery hose fills up with condensation on a regular basis and I emptied this many times.  The respiratory therapist came in several times during the night to give her aerosolized treatments.  She would also suction her as would the nurse when turning her.  She has several monitors on her.  The results are displayed at the nursing station and in the room.  These are set to alarm with minimal unusual changes most of which are nothing.  These alarms however go off through the night.   All of these disturbances and the flinging I mentioned of Jan's arm (this only happens when she is awake) kept her awake all night.  I also had very little sleep.  There was one point last last night when she appeared so uncomfortable, agitated and likely confused about what had happened to her, this with the helplessness I felt put me in tears.  It does hurt seeing her like this but I have been told many stories of good outcomes with similar trauma.  Baby steps.

Most of the night she seemed agitated.  I could put my hand on the back of her head or back and she would be sweating.  The room to me was very cool.  I had a blanket and my hoodie on and was still cold.  I think her agitation was from being hot and she only had a sheet covering her.  From what I have read her sleep is just as important as her stimulation in rehab.  Sleep here will be extremely poor.  I hope we can get to the rehab center very soon.  An excellent job was done at NMMC to get her to this point but now I feel like time is wasting in this step down unit.  She needs active aggressive rehab now.

We will be aggressively pursuing transfer to the Shepherd Rehab center asap.

I called the MHP accident reconstructionist yesterday.  He was to speak with the District Attorney yesterday afternoon.  I have not heard back from either.  I wonder how the person that did this to Jan slept last night or for the past month.  I suspect she was in her own bed.  She may have slept well thinking she was able to do to Jan what she did without consequences.   Jan did not sleep well in the hospital bed she is still in this morning.  She can not get out of it.   She has been in a hospital bed for the past month.  Most of this time was she was fighting to stay alive,  now she has to try and live.   I do not know when she will be able to sleep in her own bed again or if she will ever have another good night sleep.  I do not know if we will ever be enjoy life the way we used to.  What is wrong with this picture?


I Love My Little Darlin and I hurt for her every day

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