Day 27 (Sep 21)

 

Katja and I arrived at the hospital later than usual today because we toured the LTAC closest to our house and had the chance this time to ask lots of questions.  The visit helped us to become comfortable with the step to an LTAC, but we still have one more LTAC to visit before we can make a decision.  The hospital sends someone in every day to check if we have been able to choose an LTAC.  Fun fact: the LTAC told us that they have a two-week waiting period before patients are admitted, so we may get a lengthier stay at the university neuro acute care ward than we had planned on.

Tobias has a new nurse today and she had removed the wrist restraints that have been in place since the beginning to protect him from pulling out any of his lines or tubes.  He isn't really conscious so any pulling would have been inadvertent anyway.  I don't know if he is more comfortable or not since the restraints were very loose, but Tobias can move his arms freely now.

The medical team had reduced a key storming medication and apparently he has started storming again so that medication was put back on his schedule.  The only difference that I can see is that he is sweating less.  His HR continues to fall in the range from 85 - 100 and his blood pressure is good.  His oxygen levels hang around the low 90s, but often jump to mid- to high-90s.  His SpO2 is 96% right now.

Last night I was trying to think why Katja and I are reacting to the same situation so differently and it reminded me of a favorite story from Michelangelo.  I don't remember the proper quote and I'm not sure whether googling it will be any closer to the truth, but I remember the story as Michelangelo explaining to someone that when he sees a block of marble, he doesn't see the rough stone, but rather he sees the perfect statue inside it and his job is to remove all the parts that don't belong to free the sculpture.  This resonates with me in this experience with Tobias on two levels.  The most immediate level is that when I look at Tobias' almost lifeless body, I don't see an invalid who will never be able to care for himself, I see the strong, young man who will one day return to university and finish his degree in bio-technology and then continue on to get a PhD.  I don't know which outcome is the more likely at this point, but from a practical perspective, I know that it's better for me and Tobias to at least have a few more months of optimism before Tobias reaches whatever his new normal will be.  Wherever he ends up, we can pick up from there and move forward.  I think that it would be debilitating to envision Tobias permanently stuck in his current state or get discouraged at his lack of progress.  Like Michelangelo advises, we need to see the perfected form that is masked by his current appearance.  The natural response may be to fear, given his current physical status, that he will never fully think or communicate again.  I felt the pull of this dangerous gravity when Tobias was fighting the worst of his injury, but I eventually saw that Tobias had nothing to gain by my giving in to negativity.  I decided to look for his opportunity and believe in that.  It's contrived, I know, but no more than a sculptor looking at a stone and seeing Pietà.

The second level at which the Michelangelo story gave meaning to Tobias' troubles is how instantly the injury helped me to look at the rough stone of my life and remove all the parts that don't belong to the vital core.  Family and friends, kindness and gratitude immediately became the things that sustained me.  Vacation plans, a nicer rental car, one-click shopping with next-day delivery were hacked off and thrown away by some invisible force that operated so fast and absolutely that I couldn't imagine ever feeling differently.  The clarity I felt in the first few days of Tobias' injury was fierce and unyielding.  Relationships with other people and acknowledging the grace we enjoyed in our lives were the only things that really mattered.  I want to keep a memory of these feelings so that I can draw on them in the future when overnight delivery or getting cut off in traffic becomes more important than being patient, grateful or kind.

Hope over fear.