Day 51 (Oct 15)

I spoke with Emily this morning on Facetime.  She, Chris and Eloise flew back to Germany last Saturday.  I wasn't allowed to mention it in the blog because they were surprising Chris' parents at a family party.  I slipped up and did mention it in the blog, but luckily it was caught before Chris' parents caught wind of it and I was able to purge it from the blog pretty quickly.  In any event the surprise party was a success and Eloise emerged as a new child.  When she departed Germany almost two months earlier, she was still shy, even to family members, couldn't walk and didn't express much social inclination.  According to Emily the headline best describing Eloise's participation in the family celebration would be "Baby Seeks Stage".  She was all too happy to show off her new-found walking confidence and attention-gathering addiction.  I envy Chris' parents for the joy they must have felt seeing a brand new Eloise after the long separation.  Katja and I miss Emily and Chris, but Eloise has left a particularly large hole in our hearts.

Emily mentioned that the blog makes it sound like Tobias is making a lot of progress.  This is true, but it may be misleading and I'll try to balance the scales today.  Tobias has experienced major brain damage and we still don't know how much of his former abilities will return or can be relearned.  Katja and I are delighted by the slightest improvements, but we are cautioned that moving his fingers slightly today does not mean that he will be able to re-animate them fully in the future.  The slight, delayed, arduous motion may be all that Tobias will be capable of.  It is sobering to realize that the first thumbs-up he gave a few days after the injury is by far the quickest and widest-ranging movement his thumb has achieved.  On day 51 he is rarely able to move his thumb and when he can, it looks like his is lifting a heavy weight.  His movement is slow and halting.  Sometimes he musters two or three movements in a row, but then his thumb falls back, his eyes close and he drifts away to that place beyond our reach.  We don't understand how he is capable of something one time, but then can't repeat it for days or weeks.  The medical community doesn't understand how the brain works or repairs itself well enough to answer questions like this.

A few days ago Tobias opened his mouth for the speech therapist wide enough for him to brush Tobias' tongue with the thrush medicine.  The small victory was typical for one of Tobias' brain-injury achievements.  The therapist worked with Tobias for several minutes to get him to open his jaws, but Tobias didn't budge at all.  The therapist coaxed and encouraged, going through the same motions with each attempt.   Then after a few minutes of nothing, the lock cylinder dropped and Tobias' jaw opened and remained ajar long enough for the therapist to scrub Tobias' tongue.  Apparently the natural signal from the brain is to close the mouth and extra effort has be made to relax the closing muscle at the same time that a signal is sent to the opening muscle, which is much weaker.  This was one of the most positive signs that Tobias has given us, but for days now, he has been unable to open his mouth.  Today, for no apparent reason, he was able to open his jaws again.  There is no reaction from Tobias that is reliable.  Everything he does is arbitrary, limited and almost always non-repeatable.  I had one day where, for several minutes, Tobias responded with his thumb and forefinger to give reliable yes/no answers to questions, but he hasn't been able to repeat moving his thumb and finger simultaneously since then.  Since his responses are unreliable, you can't be sure whether he is giving an answer by not moving his thumb or is just unable to move his thumb.  The same obstacle exists when trying to read his blinks as yes/no messages.  He appears to blink on command, but then he blinks just as readily at all the wrong prompts.  I tried asking him to double-blink for yes and single blink for no, but he only managed to blink twice in rapid success on one occasion.  None of his responses so far are repeatable and reliable.

Tobias' eyes are open for up to several hours a day and often he is able to focus on a given person.  He even looks like the old Tobias, which is a double-edged sword.  Seeing his focused eyes is obviously a positive sign, but when he doesn't respond, it feels like he is being a sullen teenager giving us the silent treatment.  It's also more painful to look into his eyes when they are windows into his soul rather than when they are windows into an empty house.  Sometimes his eyes look into mine and I feel that he is confused or calling for help.  There is life behind his blue gaze, but a chasm separates us and we don't have a bridge over it yet.  We are allowed to see each other for brief moments, but we cannot communicate.  I illogically feel responsible to restore Tobias to his former self, or at least to a life where he can experience the joys of family, career, emotional growth and self-reliance.  When he looks at me with purpose in his eyes, I feel guilty for not knowing how to solve the physical and mental problems that are causing him confusion or pain.  I know this is silly and there isn't anything more that I can do for him, but it's the reality that I live in.

One of the tender developments over the past few weeks has been my re-casting of Tobias in my mind from adamantly independent adult to involuntarily dependent child.  Before his injury, Tobias eschewed most forms of physical contact that denoted any kind of affection.  It would have been uncomfortable to stroke his arm like you would a child to comfort him or to caress his head in my hands to tell him that I love him.  It all seems very natural now.  To some extent he has become our little boy again.  I'm not sure if this is due to changes in him or in us, but we enjoy a more affectionate attitude toward him than before the injury.

The resident doctor visited us at the end of the day to say that Tobias will be put on a different brain stimulant tomorrow called modafinil.  There are two stimulants that have been tried, amantadine and modafinil.  Amantadine was tried last week and coincided with his difficult storming period in the rehab hospital.  Modafinil and Amantadine were used together when he was storming in the ICU.  We are concerned that it may cause storming again, however, it makes sense to give the medication another try to test if it causes storming before he has to forego the benefits that the medication could provide.

Tobias continues to trend slowly in the right direction.  His progress is discouragingly slow and his ups and downs show a great deal of variation so it is hard to feel the forward progress unless we look backwards several weeks.  We don't have any positive indications that Tobias will recover, but no one  in our position is allowed any assurance at this point.  "It's too early to tell.  Every brain injury is different.  This is a marathon not a sprint."  It would be depressing to take Tobias' progress to date and extrapolate forward.  This is a natural inclination, but surprisingly it rarely tempts me.  I know that it won't help Tobias to fret, worry or lament.  We are going to keep him on the best path possible and look forward with optimism.  If we have a bad outcome ahead of us, we'll deal with it when the optimistic options have been exhausted.

Hope over fear.