Day 22 (Sep 16)

Yesterday was particularly hard on Katja so I'm joined today in the hospital by Chris, my son-in-law.  Katja did see Tobias in the morning and she'll join me in our bedside vigil in the evening, but she's spending some time with Emily and Eloise.  Nothing particularly out of the ordinary happened to make it a difficult day yesterday, but sitting and watching your son all day, who lies motionless and unconscious in front of you, can take a toll by itself.  I've caught myself as well fighting with the thought that he'll be in this state for the rest of his life, unable to care for himself, have a family or pursue his career interests.  It's an easy pit to fall into when you are forced to sit on the edge and look into it all day.  A nurse was telling me that she feels it is part of the natural selection process that mothers fear the worst for their children in order to ensure that they take the greatest precautions to preserve their children's lives.  I don't know if that's true in general, but Katja does have a more difficult time suppressing the most fearful outcomes than I do.  Tobias looks very much like his old self now, minus the hair.  He looks healthy and rested and it's easy to jump to the conclusion that he should just wake up like he normally would after a long lie in.  He looks completely capable of hearing his mother's voice and responding to her longing touch on his cheek, but he doesn't.  He spends his days somewhere else and his body lies resting looking like he is ready to wake as soon as he has caught up on his sleep.

Tobias has maintained very stable vital signs.  His heart rate was below 90 quite a bit today and the highest that I saw it was at 115.  His breathing has been rock solid as well at 20 - 25 breaths per minute for much of the day with an oxygen level of 92 - 100%.  The nurse practitioner called us this morning before we had even left for the hospital to tell us that Tobias' neurosurgeon has determined that Tobias' condition no longer requires his presence in the ICU.  This news is a double-edged sword for us.  It means that Tobias' body is getting better, but it also means that we are closer to leaving the care of the hospital doctors and nurses.  We will eventually have to move Tobias out of the hospital and it may happen before he is fully well.  There are cheaper options for long-term care and insurance companies require care at the least expensive level, but we are concerned about the level of care and our ability to be present for Tobias' recovery journey in a different facility.  We've grown accustomed to the comfort of the ICU attention and see that Tobias is still storming with intense muscle rigidity for much of the day.  We would feel much better if he were truly just sleeping and waiting for the egg timer in his head to go "ding".

Tobias will move to the Neuro Acute Care ward (NAC or "the floor") today or tomorrow.  From there it will be a process of following his progress to determine whether he will improve enough to go directly to the rehabilitation hospital or whether he'll get shunted to a long-term acute care hospital (LTAC) for some time while his brain continues to make friends with his body again.  It's not fully clear to me what condition Tobias will need to have in order to get admitted to the rehab hospital.  We were told that a patient needs to be able to participate in three hours of therapy a day, but today during one of the occupational therapy sessions another doctor from the rehab hospital popped in and told me that they have been following Tobias' progress and would like to see if the insurance company would approve him going to rehab for a "trial period".  The trial period would be a week or so of active treatment to see if they can jumpstart Tobias' recovery.  His age is his best asset and the doctor believes that he may respond to their program.  She fortunately came by when Tobias was in a sitting position in his bed while the occupational therapist worked to relax his limbs.  Tobias opened his eyes and looked around as the doctor entered the room.  He didn't register any recognition and couldn't track me as I bobbed like a happy fool in front of him, but the doctor liked what she saw and asked me questions about his condition.  She told me that she was going to try to buy him a few more days in the hospital so that he might recover enough to go straight to the rehab hospital.  I told her that I would rename my first born (sorry Emily) after her if she was able to get Tobias to regain consciousness in the rehab hospital.

The nurses have just come in and Tobias is moving to the NAC.  He is ready to begin the next phase of his journey to recovery.

Hope over fear.