Day 52 (Oct 16)

Today is Eloise's birthday and so our day started with a report of the celebration in Germany.  (It was a success.)  Katja stayed at my sister's house in the morning and I was trying to get to the hospital as early as possible so I had to leave before we got a full report on all things Eloise.

I was interested in getting to the hospital because today is the first day that Tobias will be receiving the brain-stimulant medication and I was concerned that it may cause storming.  I was delayed in getting to the hospital because I stopped to vacuum, clean and gas up the car that my sister generously let us use while she has been out of town for the last week.  She is flying back into town tonight and we'll be giving her car back tonight.  The car situation has been another one of the kindnesses that my family has provided for us in the midst of this tragedy.  To rent a car for the weeks and months that we'll be staying here would have been disastrous financially.  We considered buying a car and selling it when we leave, but my niece and her husband offered their minivan for our use.  They upgraded to a newer model and still have the older van.  We've been driving it since our original rental car contract ran out at the end of our planned vacation.  We were dealt a serious blow last week when it started making "jet engine" noises on start up and filled the interior with a burning rubber stench after 20 minutes of driving.  Chris and Emily took it to a mechanic who pronounced it DOA and decreed that it had "thrown a rod" or was dangerously close to doing so.  The only way forward, according to the mechanic, was a new engine for $4,000.  Ouch.

Katja called a friend whose neighbor, who we have never met, heard about our situation and figured we must need a car so they offered a car for us to use for a week or so while we got our car situation sorted.  This was at the beginning of our ordeal so we gratefully thanked them, but didn't take up their offer since we were driving my niece's car.  Now we were in need and Katja called her friend back.  Katja's friend didn't miss a beat and told Katja that she would contact the neighbor and arrange for us to get the car.  Shortly afterwards we were told that they would bring the car the next day.  At almost the same time my sister offered her car while she was out-of-town.  It was an emotional few hours for us to go from no transportation and trying to figure out what the best alternative would be and then to have two cars offered for our use.  My sister and the kind stranger may not have realized the burden they lifted for us, but we felt lighter in our hearts and appreciated the space that this gave us to figure out what we should do.  In the meantime, my niece contacted my cousin's family, who have the identical minivan, to see if they would like to have their now-broken van to use for spare parts.  My cousin's husband ran an auto-repair and salvage business for many years and his boys are also mechanically handy.  Brent, my cousin's husband, drove down to take a look at the engine to see how far gone the car was.  Hurray for Brent.  He took a look at the car and realized that the problem was not life threatening for the car and could be repaired with a new part.  The car is now repaired and we are getting it back for our use tonight.  The fact that Tobias is lying less-than-conscious in a rehab hospital imprisoned in his own body makes me wary to bluster on about how "lucky" we are, but in the midst of this exhausting misfortune, we have many times, due to the kindness of others, experienced great fortune and felt a visceral relief from their goodness and humanity.

Today was a beautiful autumn day.  The sky was a clear blue with no humidity so that the sun's rays lifted our spirits and warmed us.  My nature-related good mood was tempered with reality, however as I entered Tobias' room and recognized the signs of storming.  His body was rigid and he was sweating, but thankfully not shaking.  His heart rate danced in and out of the 120s for the morning and early afternoon.  Saturday is not a full therapy day so I was hoping to work with Tobias on speech therapy exercises.  I would like Tobias to make progress with opening his jaws so that we can get rid of the thrush on his tongue and eventually have him eat food so that he can lose the feeding tube in his abdomen.  There were no speech therapy exercises this morning, however.  The storming wasn't severe, but it precluded any constructive activity because I spent my time trying to make him comfortable and lower his heart rate below 100.  The nurse and the aide were dedicated and helpful.  They stayed with me for much of the morning and together we arranged and re-arranged Tobias in his bed.  Finally at about 2pm Tobias' heart rate stabilized in the low 100s and I sneaked out to eat my lunch.

Katja stayed at my sister's this morning to have my nephew do her hair and she arrived probably only a few minutes after I left for lunch with my sister, Lisa.  (My sister, Marvee, is the one who is out-of-town and lent us her car.)  Tobias remained in a stable state, but with a slightly elevated heart rate.  With the perfectly pleasant weather today, we decided to hoist Tobias into the wheel chair and take him for a walk outside.  We checked with his nurse to ensure that he wasn't scheduled for medicine or food and set off for our walk.  We have a finger monitor to track Tobias' heart rate and oxygen levels.  Once Tobias was in the chair and on the move, his heart rate dropped from around 110 to the mid-80s.  I'm sure the chair is an agreeable change after lying in the bed for 15 hours, but the movement also seems to play a role in lowering his heart rate.  During our walks we'll often pause to show Tobias the mountains or something else of interest.  Sometime we'll stop just to have a chat.  Normally his heart rate starts to climb when we are not moving, but once we are ambulatory again, his heart rate relaxes.  Katja, and especially I, tend to check the heart rate monitor frequently, which my sister found to be obsessive.  She thought he would be better off by not fussing about the heart rate so much.  We've seen what storming episodes look like when the heart rate gets out of control so I thanked her for her counsel, but asserted my intention to follow my own advice on checking his heart rate and staying on the move to keep it as low as possible.  We did have some lovely moments in the autumn sun and felt renewed through its warmth and energy.

When our walk was over we put Tobias back into his bed and enjoyed some rest for ourselves and relief at Tobias' tranquility.  After 30 - 60 minutes Tobias started to grow restless.  His breathing became more labored and Katja went to his side to work on clearing his passageways.  My son, Sebastian, happened to return my call from earlier in the day at that moment so I caught up with him while Katja was suctioning Tobias' nose and mouth to remove mucous and potential blockages.  At right about 7pm I heard something from Katja's vicinity and she jumped back like she had experienced an electrical shock.  Katja turned toward me and, in barely controlled excitement, told me that Tobias had just spoken his first words since the injury.  During that past several days Tobias has appeared to be moving his mouth in an effort to speak, but we've never heard anything since he wasn't able to energize his vocal chords.  Katja has been lobbying Tobias to work on saying mom or mother or Mutter.  Tobias' first words, however, were not any of those terms, nor were they anything to do with me.  His first words were "No more!".  His most reliable method of communication to date has been by raising his thumb in response to a question.  Katja sensed that he had had enough of the suction wand poking around his mouth so she asked him to confirm with a thumbs up if he wanted more suctioning.  "Give me a thumbs-up if you want more suctioning, Tobias."  No thumb movement.  "Give me a thumbs-up if you want no more suctioning.  Thumbs-up for no more."  Instead of a thumbs-up, however, she got a low, but annoyed and equally resolute "No more" from his voice box.  This was the most excitement we've felt since his first thumbs-up.  These minor miracles often appear against the run of play.  He hasn't been anywhere close to speaking so far.  Katja was hoping for a feeble twitch in his thumb and he surprised her with a clear two-word emphatic.  I didn't actually get to hear his first words because I was enjoying a conversation with Sebastian, but I'm sure now that I'll get to hear his voice again.  It may not be in the next several days since he has a track record of striking when we least expect it and usually requires a lengthy pause between miracles, but I know he can speak.

Hope over fear.