Day 72 (Nov 5)

Tobias had a better day today than the past two and we aren't sure why.  Perhaps it took his body two days to adjust to the change in storming medication.  Perhaps we and the nursing staff took two days to familiarize ourselves to his more sensitive state since the storming medication was reduced.  Perhaps we are better now at catching his storming signs earlier and removing the instigating pain or discomfort.  We just accept now that Tobias' condition will change and the best we can do is to make an educated guess as to what is causing the variation.

The cast on Tobias' right foot was removed today in the afternoon to ensure that he doesn't have any storming episodes effected by cast related pain over the weekend.  The PT and OT have been dedicating sessions to Tobias' walking and this has helped to stretch his feet into normal postures so that the casts aren't as critical.  The walking exercise started with the stand-up actions that I've written about in the past.  Standing Tobias up was important for him to feel his legs, hips and abdomen as they worked to support his upright position.  Standing was also important so that his feet were forced flat on the ground when he was vertical.  He isn't able to put his feet flat underneath him yet so that casts and shoes that he has been wearing during these exercises have wedges glued to the soles that that Tobias' foot can bear his weight without moving to a 90 degree angle relative to his leg.  His heel is about an inch higher than his toes when he is standing.  Even through his foot isn't fully articulating to the floor, the pressure exerted through his standing has stretched his ankle and he doesn't have such a misshapen foot when he is lying in bed.  

The walking exercise is facilited by a machine built into a track in the ceiling.  It lowers a seat belt material strap that is connected to a harness attached to the patients torso and upper legs.  Once the patient is strapped in, the machine supports the patient's weight and can be pulled along the ceiling track as the patient walks around the room by following the painted path on the floor directly beneath the ceiling track.  Some patients walk around the room on their own with a therapist following them for safety.  Usually the patient wears a wide belt around their waist that the therapist is holding to provide support and balance.  In Tobias' case three therapists were involved in his perambulation.  One walked behind and held him up and the other two moved his feet for him calling out each step in the walking process.  "Extend your foot", "plant your foot", "move weight onto your foot".  It was a slow process and it didn't look like Tobias was able to participate at all, but I remember the first time they asked him to move his hand and I thought they might as well tried to teach a dog to speak Spanish.  Tobias can now move his arm.  Slowly.  Sometimes.

Today is the first day that the second dose of Modafinil, the brain stimulant, was administered.  Tobias received the medicine at 1pm and he was more awake this afternoon than on previous days.  He recovered some of his former speaking prowess and responded to several questions in a row.  He also did well in his speech therapy.  The therapist is responsible for preparing Tobias to eat again as well as speech.  Today he was working with Tobias to drink juice.  He gave Tobias the cup of juice in his hand and I supported Tobias' elbow at the right height so that the therapist could help Tobias tip the cup to his lips.  With the juice resting against the outside of Tobias' lips, the therapist encourage Tobias to sip.  It took a few seconds each time, but Tobias successfully worked his lips and mouth in a suckling motion and moved juice from the cup into his mouth.  The therapist took care to remove the cup before Tobias took in too much liquid and then encouraged Tobias to swallow.  Katja has been practicing swallowing water and juice with Tobias and the therapist was pleased that Tobias swallowed the juice.  He asked us to continue practicing the drinking with Tobias since his time is limited.  It's best to practice swallowing for short periods multiple times a day.  Katja and I gave Tobias more juice to drink three more times later in the day and he continues to sip and swallow a few times before he gets exhausted and drifts away from us.  The real pain of all this juice practice is the tooth brushing that follows it.  We don't want Tobias to develop cavities, of course, and the juice is pretty bad for his teeth, but he tells us that it tastes good and he is focused on getting better at sipping.  Our dream is for him to be able to take his calories through this mouth and lose the feeding peg.  The next dream will be for him to be able to feed himself.

The doctor never came by to remove the staples, but it's possible he came by when Tobias was in therapy or out on a walk.  The weather has been spectacular fall weather and Tobias' shows us how much he enjoys the walks by keeping his heart rate in the low 80s usually.

We were told that Tobias was storming and hit a heart rate of mid 130s before we arrived in the morning.  He hadn't been able to empty his bowels for several days and apparently was irritated by his body's efforts to do so, which caused the morning storming.  Shortly after the heart rate of 130 was reached, he had two BMs in succession and settled into a calm repose with a heart rate in the low 80s.  His storming seems to be instigated by some pain or irritation and the trick is to  figure out what it is.  

Katja prepared a surprise for me this morning.  I wanted to move back to the valley side of the hospital because I think the view is much prettier.  She arranged to move the room while I was with Tobias in the first PT/OT session so when we came back we were greeted by the expansive vista of the entire valley and the snow-capped mountains on the far side of the valley (and the layer of dirty colored smog resting like a toxic blanket on the valley floor).

Tomorrow is Saturday and I think we'll need to wait for Monday for the staples to get pulled.  A shame really, but a few more days won't matter in the scheme of things.

Hope over fear.