Day 37 (Oct 1)

 

Today we arrived at the hospital after lunch.  We had some medical things to take care of in the morning and our son-in-law turns 25 today so we took him for an American lunch.  We both felt guilty not being with Tobias, but he has been stable and it was important for us to also celebrate Chris.  I remember hearing that it takes 21 days to form a habit so we've officially got the habit of spending every day at the hospital.  It's only natural to feel out-of-place not to be there.

Tobias kept the cap on his trache overnight and all through the day.  The respiratory therapist told us that he has performed great without the humified air and she thinks he is a good candidate for removing the trache entirely (decannulation).  The decannulation will be coordinated with putting the bone back into Tobias' head.  The upside of removing the trache is that he is less prone to infection, he will breathe easier and therapy can do more things with him (like lay him on his stomach).  The downside to removing the trache is that he will have to be intubated during the procedure to restore his cranium.  If the cranium restoration will happen in the next few weeks, the trache will likely stay.  If it's two months or so in the future, the trache can get removed and he can be intubated during the short restoration procedure.

Tobias continues to sleep for 23 plus hours a day.  Calling it sleep is a misnomer, however because he can’t wake up.  The therapists have taken to using a massage gun to get his eyes open.  They run the vibrating end along his forearms or press it into his pectoral muscles.  Another therapist also digs their fingers into the muscles just inward of his scapulas on his back.  They massage this region of his back so vigorously that his head and shoulders shake in tandem with the movement.  This is the most effective tactic so far in waking him.  He will usually show a flicker with his eye lashes and his eyelids sometimes lift slightly on this left eye.  Once in a while he opens his eye 75% on the left and 10% on the right.  It's rare that he shows enough awareness to focus on something with his eyes.  Today the physical therapist and the student therapist took Tobias outside and assailed him with the above animation tactics.  For more than a minute Tobias appeared to focus on me and his eyes tracked me as I moved slowly from one side of his vision to the other.  Success.  Then his eyes closed and we couldn't get him to engage again.  He has never shown any emotion with his face since the injury.

The PT session today was about getting Tobias outside to feel the sun and the wind.  There is a small waterfall that they asked him to listen for.  They took a small, fuzzy tennis ball and drew it slowly along an invisible line running from his wrist to the juncture between his thumb and index finger.  As the ball passed between his thumb and index finger they opened his hand and put the ball in his palm.  Once the ball reach his palm they closed the fingers around the ball and congratulated Tobias for grabbing it.  During the entire operation, they were instructing him what to do and encouraging him to "open your fingers", "close your fingers", "grab the ball", etc.  Short, simple instructions delivered with a loud, declaratory, but encouraging tone.  The activity depressed me a little.  I was unavoidably confronted with the fact that Tobias isn't going to wake up one day, like in a movie, and start talking to us.  Seeing the PT rub the ball over Tobias' inert hand while Tobias can’t even open his eyes highlighted just how far Tobias is still from us.  They may as well have been trying to teach a dog to speak Spanish.  I was wondering if there may be a less difficult task for Tobias to master first before he starts snapping tennis balls out of the hands of unsuspecting therapists.  I know they aren't expecting Tobias to complete the full task at the minute and I trust that this therapy will give Tobias the best chance to recover.  But he seems so far away.

The reduced dose of sleepy medication has made an improvement to Tobias’ waking hours.  His storming has not returned in force and he has shown increased signs of wakefulness. (The term the doctors and therapists use is "arousal", but I'm not ready to start using that nomenclature yet.  Maybe later.)  Today he was apparently awake for the speech therapist this morning and even opened his mouth slightly for the first time.  Katja and I were present during the afternoon joint PT and OT session, but Tobias wasn't showing any signs of waking up.  I had almost given up that he would be awake for any significant amount of time until more of the medication wore off, but tonight he was awake for a long session with his mom.  I joined her for about 10 minutes and Tobias even vocalized for the first time.  It doesn't appear intentional, but he does something between a growl and a sigh while breathing out.  He didn't struggle to keep his eyes open or show any signs of distress. It was a few minutes of forward progress on our journey to get our son back.

The nurse noticed that Tobias hasn't had the expected volume of urine outflow.  He originally had an internal catheter, but these are removed as soon as possible because of the vector they present for infection.  He has normally been using a condom catheter, which as the name suggests, looks like a condom that connects to a tube for the urine to escape.  For some reason Tobias has been "retaining" for the past day or so and the nurses need to extract the "retention" with a procedure that looks as uncomfortable and invasive as you are imagining.  To make matters worse, the nurse for today, who has been one of the best nurses caring for Tobias, completed the entire intrusion without "striking gold", if you will.  She had to get the charge nurse to come in who was able to insert the catheter successfully.  As soon as Tobias’ bladder emptied, the nurse removed the internal catheter and replaced it with a new condom catheter.

We are leaving early tonight.  It's 7 o'clock and Emily and Chris are going on a dinner date for Chris' birthday.  For the first time in the history of mankind, grandma and grandpa get to babysit Eloise.  Ahh the trust!  Now we just have to not screw it up so that we get another chance soon.

Hope over fear