Day 74 (Nov 7)

Today was a down day for Tobias.  He was exhausted and I had a difficult time keeping him engaged in anything.  His eyes were open for minutes at a time, but he never stuck around in the present for long.

The nurses aide and I showered Tobias in the morning.  After the shower we put him back in bed because he is usually relaxed after a shower and today was no exception.  He slept for two hours and his heart rate dropped into the 50s at the lowest.  I wanted to take him for a walk in his wheelchair, but I always feel gratified when I do something that helps Tobias relax and I can see that he is at peace.  It was the right decision to put him back into bed.  I knew I would have a chance later to take him outside for fresh air.

Tobias got his fresh air in the afternoon.  A friend of his from college came to visit and we took Tobias for his walk at that point.  Tobias had been largely uncommunicative for most of the day, but during the walk he confirmed several times that he wanted to stay out on the walk.  Today was bracingly chilly, but we piled the blankets onto Tobias and put his coat on backwards and he managed comfortably.  I checked his heart rate and oxygen levels several times and his heart rate stayed under 90 the whole time.  I applied the hot washcloth therapy to Tobias a few times and he was even able to say the name of his friend who came to visit.

Because Tobias did so well with drinking yesterday, I was looking forward to practicing with him again today.  I didn't get the chance until late in the afternoon and coincidentally the nutritionist brought him a soup and some apple sauce to try in addition to the orange juice he did so well with yesterday.  Today's eating practice, however, was a snooze fest.  Literally.  He managed to open his mouth wide enough for a few spoonfuls of apple sauce and soup, but I'm not sure if he swallowed anything.  I had to eventually suction all of it out of his mouth again.  He did swallow a large sip of orange juice, but he coughed hard and painfully afterwards and I'm afraid that he had aspirated it into his lungs.  I took this as a sign to stop practicing eating for the day.  He was too tired to swallow properly.

Two things that Tobias has been really good at it is opening his mouth wide when I'm suctioning it.  I'm not sure why, but he opens his mouth and allows me to get the suction wand in and around everywhere.  He also opens his mouth wide enough to fit a toothbrush to apply the thrush medicine to his tongue.  The funny thing is that the medicine tastes bad.  Tobias told us as much, but he willingly opens his mouth for the bitter medicine even when he can't open his mouth for sweet orange juice or savory tomato soup.  I know that Tobias is struggling to re-animate his body.  It hurts to see the focus in his eyes and to perceive the slight shuddering his his limbs as he works to move one of them, but can't figure out how to do it.  His effort spills over to other nerves and other pathways and engages multiple limbs when he is trying to engage only one.  It's like he is trying to thread a needle while wearing boxing gloves.  He must be frustrated and possibly confused.  It's heartbreaking to see him struggle or not be able to engage, but glorious when he makes progress.  If I knew that he would recover enough to pursue his educational and life goals again, this would all be easy.  The hardest part is not knowing where this journey is leading us.

Hope over fear.