Day 54 (Oct 18)

Tobias is on a winning streak.  Even though he stormed more today and his heart rate reached 130 at one point, he is more alert each day and his speaking is becoming more frequent.  He speaks in a weak whisper that is often too quiet to interpret, but we can sometimes understand him based on syllable fragments and the shape of his lips.  In addition to the verbal sleuthing that we have to do, Tobias gave us a few very clear responses and once even got his vocal chords engaged.  His motion responses are more miss than hit, but he is trending in a good direction and today was successful in getting his right hand to expand and then close around my hand.  It feels great to have my son squeeze my hand intentionally.

The speech therapist hadn’t heard Tobias speak yet and was excited to meet with him.  Tobias looked like he was trying to speak, but he was unable to pull it off successfully.  However, when the speech therapist was pushing Tobias to open his mouth wider during an exercise, Tobias told him unpromptedly “I’m trying”.  

The rehab doctor dropped by to check on Tobias and confirmed that the cranioplasty is still scheduled for Friday.  He expects Tobias to be in the critical care unit (ICU) for 24 – 48 hours and then maybe a day in the acute care unit (“the floor”) before returning to rehab.  As soon as Tobias returns to rehab, they will look into getting the trache removed.  At the end of the conversation he asked Tobias how he was feeling and Tobias answered him saying, “Pretty good.”  This was a surprising answer, partly because of Tobias’ condition and partly because there are a range of answers that would have been simpler to pronounce, so the doctor followed up with “I think you just said you are doing pretty good.  Is that right?” to which Tobias gave a clear “Yup”.

I asked the doctor if he still felt that the original target departure date was valid.  We were told in the first few days that they were targeting to discharge Tobias on November 18th.  Tobias has done well and is showing continued progress so the doctor will be proposing to extend Tobias’ stay in the rehab hospital and we don’t know when we’ll be flying back to good-old-Germany.  It will depend on his continued progress and the insurance company’s evaluation of the data.  The doctor said that he will personally advocate for Tobias’ further stay, if necessary.

The PT student, who has been working with Tobias since we’ve been here, is moving on to a new rotation in two weeks.  It turns out that he is a man of many talents and asked if he could play his violin for Tobias as part of a musical therapy exercise.  He is preparing a presentation on the subject and wanted to include some pictures and video for his report.  He played popular songs from contemporary artists and Tobias responded incredibly well to it.  The music was loud enough that the sound waves energized our skin.  Quality music performed live is moving and emotional.  Tobias’ eyes were wide open and he was completely focused on the performance.  He was able to hold his head upright for much of the presentation, but was completely exhausted at the end due to the amount of stimulation from the music.

Tobias is trying very hard to communicate with us.  It’s ironic that I’ve been trying for weeks to establish a reliable communication method with thumbs or blinks and, in the end, Tobias’ verbal communication won the day.  It was nice to hear that he told the speech therapist that he is trying.  It indicates that he really knows what is going on.  Since his facial expressions are still largely absent, it’s been a guessing game about how present he has been.  His words are still hard to decipher, but he did give Katja and me a clear “yes” that went beyond a whisper and sounded pretty much like the old Tobias, vocal chords moving and all.  We are invigorated by the progress he is making and excited by the snippets of communication that he is sharing with us.  We look forward to the coming days.

Hope over fear.