Day 97 (Nov 27)

Tobias' heart rate has been over 100 all day and I don't understand why.  The nurses' aide told me that Tobias hit 133 this morning and I saw him spend over an hour in the 120s.  Today is Saturday and there have been no medication changes so it doesn't make sense that he would spike today unless it took a few days for the propanolol to metabolize out of his system.  He has spiked up over 100 a few times in the last couple of days since the propanolol was removed from his medications, but the spikes cycled back down after a few minutes.  Today has been an exception with his high heart rate lasting the entire duration of the day.

Tobias ate well this morning, but he follows a pattern where he can open his mouth, chew and swallow for about 20 minutes before falling asleep or wandering off to where ever his mind goes when he checks out.  It's a struggle to wait for him to be present again long enough to swallow the remaining food in his mouth.  Tobias consistently tells me verbally or with his arm movements that he wants to continue eating, but he'll give me an energetic "yes" with his arm movement in one second and fall asleep before I can get the spoon to his mouth.  I don't think this is intentional on his part, I think his brain switches from alert to "I'm outta here" instantly with no advance warning.  He normally checks back in a few minutes later and confirms with his arm movements that he wants to continue eating.  It's almost like I'm being observed on a hidden camera and Tobias is in on it.  I've learned to stop feeding his when this cycle commences.  For several days, I soldiered on with the resolve that as long as Tobias wanted to eat, I was going to feed him, but it wasn't really helping him and could potentially be a choking hazard if I stuffed his mouth full of food right before he checked out for a lengthy period of time.  I try not to overload his mouth, but he swallows many times without actually clearing his mouth so I'll give him more without realizing that he is still caching the prior spoonfuls in his mouth.  It's only when he yawns and I can see the oral inventory that I know he has had too much to eat in between swallows.

Tobias received his Covid booster shot in his right arm and a flu shot in his left arm today.  I've got to remember and make sure everyone steers clear of adjusting him by holding his shoulders tomorrow.  Covid is running rampant in Germany at the moment and we wanted to give him all the help he can get against catching the virus.

The fall weather has been getting colder, but the sun makes everything so beautiful that I wanted to get Tobias out for a walk today again.  Katja was dedicated to making sure Tobias went outside for a walk every day and I'm trying to hold up my end without her positive influence in the room.  The weather was chilly, but walking in the sun light resulted in a pleasant combination of feeling cooled on one side and warmed on the other.  It doesn't happen frequently and the sensation was relaxing and refreshing.  I had Tobias bundled up like he was going to survive in the arctic so he probably felt warm everywhere except his face, which was open to the air.  I thought he would be bored with our standard route and asked if I should take him to the neighboring hospital that has a higher vantage point to see the prettier mountains, which are to the south of us.  He indicated that he wanted to stay in the current location and continue our monotonous pacing on the 50 yards of sidewalk that catches some sun.  So that's what we did for about 90 minutes.  I had told the nurse that we were going to be returning after 30 minutes and she wanted to give Tobias some tube food so we were an hour later than I indicated.  Tobias would have preferred to stay even longer.  Every time I asked if he wanted to return or stay, he always chose to stay outside.  Tomorrow is Sunday and there are no therapies so we'll have lots of time to study our favorite microcosm of the great outdoors.

There is a new movie on Disney Plus from Marvel and so I put that on for Tobias when he was safely ensconced in his bed again.  He watched it intently and indicated at the end of the movie that it was good.  I didn't get to see it because I had a high school friend drop by to say hello.  I was also out of the room to launder the soiled shirts and pants from the last few days.  When I returned, it was time to feed Tobias dinner and he ate well and seemed to be comfortable and alert.  He started answering my questions by vocalizing without opening his mouth in the common way everyone says "Uh huh" for "yes" and "Ut Uh" for "no".  This is a first.  He had made noises from his vocal chords without opening his mouth before, but never intentionally to answer questions or at least never clearly enough that I could understand.  I asked him if he were concerned about returning to Germany and he responded with a confident "Ut Uh", which made me feel much better.  Tobias typically gets concerned with big changes, but I think that he understands what is happening, why it is necessary, and how it is the best thing for him.  I wish his mother would have been present to hear him.

Hope over fear.