Day 30 (Sep 24)

Bottom line: Tobias started his first day of rehab today.  He had six session of therapy, but it was all too much for him and he slept through almost all of it.  We're told that this is pretty common and that after a few days, he'll build up enough muscle to stay awake longer and participate more actively.

Detail:

Today was the first day in the rehabilitation hospital.  Tobias had two appointments a piece from three disciplines (physical therapy, occupational therapy, speech therapy).  We also met with the case manager.  There was a printed schedule waiting for us and computer monitor with the schedule on it as well.

In order to ward off any storming episodes the doctors doubled the dose of one of the medications.  It was supposed to not impact his wakefulness or ability to respond, but Tobias was not very responsive today.  His blood pressure was very low, however, which is a common side effect of the beta blocker medicine that was doubled.  Tobias' eyes were open for some of the day, but not as long as the two days before.  I think it is possible that he was exhausted by the exercises that the rehab process put him through.

The physical therapist used a hoist to pick Tobias up and transfer him to a special wheel chair.  The wheel chair can recline to allow the patient to transfer weight across the entire back.  It also makes it easier to hold one's head in place.  The first session was only to get Tobias into the chair and see how he fared in a sitting position.  The lungs and blood pressure have to respond differently when the torso is vertical vs horizontal.  Tobias did well and when the session was over the PT let us keep him in the chair to give him a chance to work more on his balance.  I set an alarm for 11:45 and we called the nurse to help us put Tobias back into his bed.

The speech therapist came in next and ran Tobias through some exercises that I haven't seen yet.  The speech therapist role goes well beyond teaching a patient to speak.  They work on all of the actions dealing with the mouth and throat.  The speech therapist, for example, leads the decision on when the patient is ready to wean off of the trache.  The T-piece is lightly pressure-fitted onto the tube that goes into the throat.  The speech therapist pulled the T-piece off and placed a one-way valve over the tube.  The valve allowed the patient to breathe in through the valve, but block any air from exiting the valve.  The patient needs to learn to exhale through their nose or mouth.  Tobias didn't do very well unfortunately.  He had two chances and couldn't figure out how to get the air to leave effectively.  I put my finger under his nose and couldn't feel much air leaving through his nose.  After a minute or two, the speech therapist removed the valve and pressurized air rushed out of the tube like opening a shaken 2-liter bottle of soda pop.  Tobias was able to breathe in and oxygenate his blood.  The oxygen monitor showed a slight drop in oxygen on his first attempt, but his oxygen stayed at 96% on the second attempt.  It would have dropped off soon, if the ST hadn't stopped the exercise because Tobias would have run out of space to breathe in.  He was laboring more and more with his breaths.  The ST said this is very common.  Tobias will have another chance tomorrow.

The ST also put a cup up to Tobias' lips and asked him to take a sip.  The ST used several similar exercises because patients sometimes react instinctively.  Tobias didn't.  The ST put some ice from a spoon onto Tobias' lips.  Tobias didn't respond at first, but he eventually moved his jaws somewhat to chew the ice.  It was very minimal, but it was movement.  The ST also tried to get Tobias to hold the spoon and feed himself ice.  Same drill with a toothbrush.  The ST was good and encouraged Tobias to open his mouth slightly.  Tobias helped him out enough that the toothbrush went past his teeth for a stroke or two, but not more.  Tobias has a white mass on his tongue that you can see when he yawns wide.  The ST explained that the white mass is a yeast infection.  It isn't dangerous, but it may cause some discomfort and should be treated.  The ST wasn't able to scrub it with the mouthwash, but he did get some of the mouthwash past his teeth and onto his tongue.

The PT came back in the afternoon and put Tobias on the wheelchair again.  She took him for a tour of the two gyms and then did some stretching exercises with him.  Tobias slept through almost the entire tour.  He managed to open his eyes a few times, but his stamina was weak today.  All the movement and new impressions were apparently too exhausting for Tobias.  The PT said that it often takes several days for the patient to get past the initial tired phase.

The occupational therapist met us in the gym for the second visit with Tobias.  The first visit happened before we arrived in the morning.  Tobias was sleeping still through the occupational therapy visit.  Eventually the OT took Tobias outside the gym onto the patio area in the warm sunlight.  It was hot and we all felt the sun warm our skin immediately.  Tobias must have also felt the warmth, but he didn't budge from his nap.  When Tobias is in the wheelchair, he is breathing room air through his trache.  The respiratory therapist told us that Tobias should only go an hour without the humidified air so the OT had to head back to the room before the time was over.  Tobias woke up from his nap as they were hoisting him back into the bed.  He probably slept through 95% of his tour through the hospital.

That was the last session of the day.

Today was interesting, but also a little frustrating for me and Katja. It was hard to push a sleeping, motionless Tobias through the gym where patients in their sixties and beyond were working on catching a ball or walking or lifting weights.  It was hard for me not to feel badly that Tobias may never get to do those activities again.  I try to ban these thoughts from my mind, but I'm not always successful.  Once one of these thoughts get its foot in the door, it's hard to keep their friends from rushing past me through the gap.  It happens sometimes when I see a picture of Tobias.  The juxtaposition of the healthy, virile person in the image and the unresponsive body lying imprisoned on the bed creates a wave of emotion that threatens to overwhelm my defenses.  Sometimes I can head the wave off, sometimes I can't.  Many people have told us stories about patients who have miraculously recovered in an effort to boost our spirits, but I find these stories disheartening.  They are only miraculous because they are so rare.  I would much rather hear stories about the patients who always evolve from the minimally conscious state that describes Tobias to a state where a person can live a normal life.  Today should have been exciting and promising.  It was discouraging that Tobias wasn't able to participate more actively in his therapies, and I wasn't successful at putting hope over fear today.  It's like being sick in the middle of the night, however, I know that I just have to hold on and eventually a new day will arrive and the strange head trip that my sickness put me through will evaporate and I'll be okay again.

Hope over fear