Day 40 (Oct 4)

Tobias' recovery continue to be a jolting experience.  Today was exhilarating and heart-wrenching based on the hour.  Good news first.  The PT and OT administered the CRS (Coma Recovery Scale) test again today.  This is a test used to measure Tobias' recovery objectively over time.  Last week was the first marker and Tobias scored about as low as a minimally conscious person can with a score of 3.  Today he doubled the score with a 6.  Katja and I weren't allowed in the room because we may influence Tobias' responsiveness and the test needs to objectively comparable week-to-week.  The therapists were excited about Tobias' progress.  He moved his thumb and was trying to move the fingers his right hand on request.

Katja and I spent some time with Tobias and enjoyed his increasingly wakeful state.  We practiced getting Tobias to take hold of a tennis ball like we've seen the therapists do and Tobias' thumb and fingers moved slightly to give way to the ball.  Katja left around 10:30 am to spend the day with Emily and Eloise.  I got to have some one-on-one time with Tobias.  His eyes were open for much of the day and we practiced moving his thumb to some success.  He even moved his index finger for me for the first time.  It was only a wiggle, but it was another step forward in our journey.

At 1pm I joined the joint PT/OT session.  The put Tobias in a contraption that helps the patients to stand up.  It looks like a chair with a tray in front of the sitter, like a school desk or a high chair.  The tray has padding to support the chest and the front of the chair has a flat surface to place the feet and a padded section against the shins to keep the knees from bending.  A handle on the side operates the device like a car jack and the patient can be moved from a sitting position into a standing one.  The seat lifts up and the rest of the padding moves in concert so that the person is brought comfortably to a stand.  The device is useful to help patients experience the sensations of standing without physically being able to stand.  A standing position puts different forces on the body than lying in a bed and bed-bound patients need practice to adjust to standing again.  The PT worked with Tobias during the exercise and Tobias was able to move his fingers and thumb enough to "take" the ball for the first time.  He was also able to dramatically drop the ball by extending all of this fingers fully at once.  It's really interesting to see how his brain is intermittently able to control his body so well, but at other times not at all.  Tobias was able to move his thumb and fingers slightly and was focusing on people with his eyes and tracking items at times.  Nothing he does is 100% consistent, but he is showing progress.  I had to look away one time because his eyes brighten and his face reminded me of when he was a very little boy.  It was too cutting of a reminder of his current situation.  I'm doing well managing my emotions for the most part, but I saw some pictures of him from before the injury the other day and I knew that I'm not ready yet to be reminded of how vibrant he was vs how vibrant he is.

He went directly to speech therapy, but he was pretty tired from his prior therapy.  He managed to move his jaw a little when ice was placed in his mouth and he was able to separate his teeth by 1/4 of an inch when the ST put a sucker in his mouth.  I was sitting at his side and could clearly see his tongue trying to get at the lollipop from behind the enameled prison bars restricting it.  For some reason the bite reflex is almost always engaged for Tobias and it was a success for him to separate his teeth at all.  The ST also put some Mountain Dew on a small sponge and Tobias seemed intent on lapping it up.  I don't think Tobias has ever tasted Mountain Dew, but he became a fan today.  His face still shows no emotion, but his eyes and the small movements he can make communicate his desires and condition.  I can't always read him, but it was clear that he was into getting some calories outside of the liquid diet that gets injected into his stomach through the feeding peg.  The thrush on his tongue looks better today as well, but I was only able to get a quick swipe onto his tongue one time today.  The thrush medicine application works better when a team is working together to effect a yawn and take quick advantage of it.

The ST let me push Tobias back to his room and we decided to leave him in the chair for 30-60 minutes depending on his heartrate values.  Or at least that was the plan, what actually happened was, for me, almost a miracle.  I've been trying to work out a way to communicate with Tobias and since his thumb movement seemed to be consistent, I asked him to move his thumb if he wanted to stay in the chair.  He moved his thumb.  I asked him to move his thumb if he wanted to get put back in bed.  No movement.  I asked the same questions in a different order, but got the same answer from Tobias.  He wanted to stay in the chair.  I used the same approach to ask him if he wanted to watch a David Attenborough nature documentary or watch Downton Abbey.  He consistently chose David Attenborough.  I felt light-hearted and fulfilled watching Tobias watched several episodes from nature documentaries.  His eyes followed the TV and although he fell asleep at times, he consistently focused on the TV when his eyes were open.  After almost an hour I noticed that his body posture looked less relaxed and I asked him whether he wanted to stay in the chair or get back into bed.  This time he chose bed.  This is the first time I felt certain that Tobias was communicating with me since the injury.

Today was a day of several important firsts in Tobias' recovery.  Notably Tobias received his first dose of the brain stimulant, Amantadine, at 1:30.  He showed, however, most of his improvements before the medication and even his communication with me was evidenced before the drug would have had a significant effect.  Everyone was going so well and then he started to storm in the evening.  His heartrate didn't get over 140, but his muscle posturing and sweating were causing him serious discomfort.  His fast and desperate breathing betrayed his distress.  I tried all the tricks to get his storming to stop, but it was a difficult battle.  I was joined by one and then two nurses and we would get his heartrate to drop into the 110s, but it would shoot up to the high 120s again.  When it hit 135 the nurse called for the doctor, but by the time he freed up, we had battled the storming back down to a heartrate of 106 and his sweating and posturing were back to normal.  The biggest help in the end was to bend his legs and hold them in a bent position.  This must have relieved the pain signals and he calmed down.  It's also possible that the storming just runs its course without a care about our best efforts, but we've been able to effect an immediate drop in his heartrate frequently enough that I'm confident we had an impact.  I'm relieved that we were successful in dropping his heartrate without having to resort to narcotics.

Tobias is still prone to storming.  His heartrate is 110 and has been fluctuating between 100 and 120.  It may be the amantadine is waking up his brain and that is making him more prone to storming.  He gets more anti-storming medication at 9pm and the doctor is attuned to his situation.  I don't think he is at risk of serious injury or worse, but it's hard to leave when I think he might be suffering if I'm not there to battle the storming for him.

Hope over fear