Day 102 (Dec 2)

I got a call this morning while I was still at my sister's home that the angiogram that the neurosurgeon was supposed to perform on Tobias tomorrow had been moved up to today.  This was good news and the timing of it couldn't be better.  It would happen after Tobias' therapies were completed and not interfere with anything.  Yea.  I was happy that we would check this important item off the "to do" and avoid any last minute dramas.

I took the chance to take Tobias for an hour long walk outside in between his morning therapy sessions.  I had more time for walking because he wasn't allowed to eat anything through his mouth due to the surgery at 4:30pm.  The weather has been beautiful and I was too warm with my coat on.  I was originally planning on walking for 30 minutes, and then stretching Tobias' feet and taking his arms through some range-of-motion exercises.  He seems so relaxed outside, however, that I walked with him right up to his speech therapy appointment.

Yesterday I received the Moderna booster shot and felt fine with the small exception that my arm hurt slightly where I got poked.  Right before I went out for the walk with Tobias, however, I realized how exhausted I was.  I put on my big boy pants and completed the walk for Tobias, but during the speech therapy, I cleared off the recliner chair in his room and rested for an hour.  It helped, but I was still weak and tired until 6:30pm.  At that time I realized that I was over the tiredness.  Luckily no headache and just a minor bout of exhaustion.  I am looking forward to sleeping tonight.

The massage therapist came in at 3:30 so I didn't have time between speech and massage for another walk outside.  I would have like to because this is one thing that Tobias seems to desire.  Given his entrapment in his own body and the result of being stuck in the same hospital room for most of the day, it's hard for me to deny him a break outside when I can make it happen.  After the massage session was over I needed to stay in the room because Tobias was going to be transported to wherever the angiograms are performed.  I had already signed off on the procedure just after lunch before we went on the walk.  4pm came and went.  4:30.  5:00.  5:30.  You can probably see where this is going.  At 5:30 a resident doctor from neuro sought me out and apologized because they will not be able to perform the procedure on Tobias today.  I was polite, but critical and pointed in my feedback.  They have known that Tobias was supposed to fly back to Germany on Saturday since before Thanksgiving and they failed to perform the angiogram so now we have had to move the flight.  His current return flight is set for Monday and I told her that I would not move the flight again.  I don't know if I will be able to avoid moving the flight if they don't perform the angiogram by then, but I will make my displeasure for their lack of commitment to Tobias well known.  The resident felt certain that they will be able to fit Tobias in by Monday.  I felt that I should have made a bigger deal about the angiogram schedule before Thanksgiving so that we got it done at the beginning of the week, but I elected to just trust in the casual commitments.  That was a mistake.

Tobias has been running his heart rate at over 100 for most of the day.  In the early evening, however, his heart rate slowed and he has been pumping in the 70s for two hours.  Even when his heart rate is in the 120s, Tobias reports that he feels fine so there is probably nothing to worry about, but it makes me feel better to see his current heart rate of 71.

We should hear the details of Tobias' flight tomorrow, although it is confusing about what we will know when.  There are several companies involved and I'm not sure we are going to be talking to the decision makers.  There is a "doc-to-doc" phone call tomorrow to finalize the approvals and then the company tasked to arrange the flight will spring into action.  If they are able to confirm the flight quickly, we'll find out in our AM, but it may take longer to get the flight details.  Katja spoke with someone from the air ambulance company in Germany and learned that an aircraft will be sent from Germany and that it may need to make three or more stops to refuel.  It sounds like a common flight plan will be our location to Canada, then onto Greenland, then to Iceland and then to Berlin or another fueling point in between.  I should find out tomorrow if I'm allowed to travel with Tobias.  I'm glad there is a doctor discussion in the morning and I hope that our doctor advocates for me to help watch over Tobias on his return flight.

The best part of my day is when I am alone with Tobias in his room or out walking.  He can't communicate in any meaningful way, but I feel close to him and I am able to communicate to him.  His past actions indicate that he understands everything so I get to share my love and concern for him.  I tell him that I'm proud of him and that I love that he is working hard to regain control of his body.  I tell him that I love him, which is what Katja and I both did often before his injury.  He would also tell us that he loves us.  I never say that I feel sorry for him or express regret for what his injury will mean for him or for us.  Of course, I do feel sorry for him, but it seems obvious that one's natural reaction to commiserate would only make it harder for Tobias to climb the daunting mountain in front of him.  I want him to know that he can rise to these challenges and that Katja and I will support his efforts.  I would prefer to carry him up the mountain, but he needs to be strong and somewhat hard to keep pushing uphill.  I wish we could make it easy for him, but his path is hard and he needs to be steeled to the ungrateful effort of it.  I like the quiet times with Tobias the most because I can work with his joints and muscles and sometimes I succeed at relaxing his strained body and his heart rate drops 30 beats per minute.  It's cathartic to speak calmly to him to confirm our bond and my commitment.  I feel purpose and meaning in explaining how his body is trying to repair itself and encouraging him to find tactics to recover the abilities that have been taken from him.  These quiet moments with Tobias help me to remove the weight I feel on my shoulders, recognize it isn't necessary to carry any longer today and leave it on the side of the path as I accompany Tobias on his journey.  The worst part of my day is when I have to leave Tobias at night.  He is trapped, unable to control his own body and I know that I'm going back to a comfortable bed and a life of movement and communication.  I know that there is nothing more that I can do for him, but I have to actively tell myself that I can't help him anymore and give myself permission to leave.  Tobias' injury has created many struggles inside me between reason and emotion.

Hope over fear.