Day 17 (Sep 12)

Tobias moved to Germany with us when he was two.  We spoke to him in English at home with the logic that he would pick up German from everywhere else, so when he started Kindergarten at the age of three his German wasn't as good as the other children.  We tried to prepare him for the shock by explaining that the kids and teachers at the Kindergarten would be speaking German and that he was going to have to use his German to speak with them.  Tobias was ready with an answer.  "No", he said, "they can learn English." 

Tobias got a shave today.

Today was a good day for Tobias.  It was a calm day.  No big changes or decisions.  He was put on a new beta blocker medication for storming that keeps the heart rate in check.  This seemed to work most of the day, but he did reach a HR of 150 a few times.  The severe storming didn't last as long as a few days ago, however, and he spent much of the day in relative peace.  We don't know what the best approach for Tobias is.  He is so medicated at this point that he is non-responsive to verbal cues.  He still withdraws and localizes with his arms and legs when he is pinched, but this is a lower-level function that doesn't require him to be conscious.  It seems like the doctors have a terrible choice between Tobias appearing comfortable with high doses of medication or Tobias being able to respond to commands, but appearing to be in duress from the storming.  We wonder which approach is better for Tobias in the long run.

Tobias was still on the T-piece when we arrived this morning.  He was successful in using it all night.  He was giving signs that he was tiring and at 11am, at the 24-hour mark, he was put back on the ventilator.  This is a really good result compared to the time it normally takes patients to go a day without the ventilator.  Tobias has strong lungs.

Tobias remained in the ICU today.  We expect that he will move to the "floor" tomorrow and we are looking at our options to keep him in a long-term acute care facility.  Katja and I spoke with a friend of ours today who knows the hospital system well to understand our options.  This helped to give a peace of mind because it shone some light in the dark cave where we are casting about.  Knowledge is certainly power and in this case it is comfort.  We are concerned at the increase in Covid infections.  Not long ago the hospitals all over the country restricted visitation due to Covid and we do not want to be shut out from supporting Tobias directly.  We are going to look into the possibility of moving him back to Germany, but also continue to investigate our options here.  It always helps to be prepared.