Day 57 (Oct 21)

Tobias bounced back from his off-day yesterday.  His white blood cell count is back to normal and the doctors think that he must have had some acid reflux back up onto his lungs which caused the slight fever, high white blood cell count and the higher heart rate.  Tobias was put on a broad range antibiotic last night when the doctors suspected an infection was the cause of his deteriorated condition.  This morning, however, when his blood results no longer hinted at an infection, the antibiotic was stopped.  Tobias' temperature was back to normal and his heart rate was below 100.  He was more responsive than yesterday, but not yet back to his renaissance form of three days ago.  He was able to move his arm to give me the world's slowest high five, however, since he was unable to unfurl his fingers, we technically performed a "flump", which, my daughter informed me, is the term used to describe when you are unclear about giving a "high five" or a "fist bump".

A new speech therapist visited Tobias today and applied some new techniques to help his facial muscles recover.  She massaged his cheeks and jaw joints to help the tissue and muscle "unadhere".  The muscles and tissues adhere to each other in the absence of active use.  Since Tobias has been immobile for several weeks, some of the difficulties with opening his jaws may be due to the tissue-muscle adherence.  She showed me how to insert a gloved finger inside his cheek and press his cheek flatter with fingers from my other hand on the outside of his cheek to help release the tissue and muscle.  The fingers from both hands are pulled from the far edge of the cheek to the mouth six times to help loosen the tissue.  She taught me to massage his cheek bones and neighboring muscles that control the jaw.  She also used a machine that puts electricity directly onto the muscles associated with swallowing so that they would fire and help his brain make the connection between the muscles and swallowing.  The final coup-de-grace was applying a stretchy tape to each side of his cheeks in two directions.  This lifts the tissue layer away from the muscle layer slightly to aid the breaking up of the adherence and allows the jaw to relax.  The speech therapist offered to put the tape on me as well so that I could feel what the experience feels like.  At first I said no since there is no real benefit in it, but I reconsidered since we only get to live once.

Solidarity!  Including angry face.

Tobias is still largely unresponsive and it will be a long time before he has any productive use of his limbs.  We are encouraged that he is speaking on a daily basic.  He has said his "name" to various people and says "yes" and "no" at least a few times a day.  He isn't able to engage his vocal chords yet, but occasionally a word will come out with some vocalization and not just as a breathy whisper.

As far as we know the surgery is still on for tomorrow.  I was told that it is planned for 11:30 in the morning.  The resident doctor told me today that the neuro team will likely make the final decision tonight or early tomorrow morning.  It's a little strange to me that such an important surgery can be decided just a few hours before it is performed.  We keep learning that medicine isn't a perfect science.  The neuro team will review the x-ray that was taken this afternoon and review how Tobias dozed through the night to ensure that he is ready for the cranioplasty.  The main rehab doctor believes that the crainioplasty will happen tomorrow, but the decision belongs to the neuro team.

Hope over fear.