Day 70 (Nov 3)

Tobias started storming again last night and his heart rate reached 150 bpm.  This concerned the nurses enough that the overnight doctor was called in and Tobias was given a dose of Oxycodone.  This has always done the trick and his heart rate dropped to below 100.  The unfortunate consequence is that he is often dormant for the following day after he has been given oxy.  Today was a textbook post-oxy day and it was very hard to get Tobias to stay awake.  He couldn't get his words working until late in the afternoon and his speaking was more difficult to understand.  He also started storming again in the afternoon with rigidity, sweating and a heart rate of 120 plus.  One time we were able to get him back to a heart rate below 80 with no other symptoms after a change of his brief, but less than 30 minutes later he was back into a mild storming episode.  I feel like that scene from Godfather 3 where Al Pacino's character complains that "just when I thought I was out, they pull me back in".  Storming is no fun.

Tobias had some very good things happen today as well.  The speech therapist re-administered the swallow test where a camera is dropped through his nose to view the swallowing mechanics in his throat.  There was quite a crowd in the room because it took two speech therapists to perform the test and each of them has a student in tow while the nurse was working on something in the room as well.  I left to give them some space, but was happy to learn afterward that Tobias was given the green light to take food orally.  Katja was especially excited to feed Tobias "real food", but he was so tired in the early evening when the food came that he just let the soup, apple sauce and chocolate pudding sit on his lips.  He managed a few swallows, but consumed as good as no nutritional content.  Apparently it's common that brain injury patients don't have an appetite for several weeks when they first go back on real food.  Tobias' case is especially complicated because he can't readily communicate.  He can barely open his mouth and swallow.

But I jumped ahead to the evening too quickly... Both casts were removed in the morning and a new cast was put on his right foot.  The left foot showed a rash from Tobias sweating so his old cast will be used again when his skin has dried out.  The cast guru made a linear cut on the lateral side of the cast and then Tobias' leg was slid out of the cast sideways.  The cast material is not as hard as the "broken leg" casts that you may have signed in the past and is flexible enough that it can be "opened" with just one cut down the side.  Reusing a prior cast isn't the preferred casting method, but I guess they remove the casts this way in case they want to use them again.  The PTs glued vecro straps to cover the split edges of the cast so that it can be closed firmly again.

I joined Tobias for his afternoon OT session and Tobias had a difficult time keeping his eyes open, but he was physically responsive with his right arm.  The OT used a machine that has a stout metal base on a frame with rollers so that it can be easily moved from room to room.  Another metal piece extends sideways from the base and looks like one of the metal lamps that my dad used to attach to the side of his desk to provide task lighting.  The lamp was at the end of two pairs of metal arms that were hinged in the middle and spring loaded so that the lamp could maintain it's position.  The arms on this device didn't have a lamp at the end, but rather a small surface curved to fit the shape of an arm with a strap joining both sides and forming a loop.  The OT secured Tobias' right arm through the loop and rested it on the curved surface.  The loop was tightened so that Tobias could move his arm and the surface would follow with his movement.  The purpose of the whole device was to bear the weight of Tobias' arm and move naturally with his movements so that it would be easier for Tobias to practice arm movements.  It worked well and Tobias was surprisingly able to move his arm in a punching motion, a drinking motion and a saluting motion.  The OT practiced these moves with Tobias until Tobias could offer no more movement.  I was pleasantly surprised at his ability to move his right arm.

This evening has been difficult.  Tobias has strung together two of his best days since his injury, but now he is storming again.  He looks distressed so I washed his face with a warm washcloth and asked if he was in pain.  The washcloth helped him to relax enough to be present and his gaze moved from a thousand yards out to right between my eyes.  He hasn't been able to speak much today so I didn't expect an answer, but his glassy eyes focused intently on mine and he said "Yes".  I generally feel elation when Tobias speaks, but this word caused a jolt of nerves in my back and I felt like I had stepped on a tack.  In general Tobias has been answering "Ya" for affirmative answers so it hurt even more that he used a more proper term than he normally would have.  I asked where he was in pain, but he couldn't find the energy or the wits to explain.  I checked everything about him, but I couldn't find a cause for his discomfort.  I remembered the grinding discontent when our kids were babies and cried from some unseen agony, and I couldn't do anything to relieve their pain.  It's still difficult to accept the shortcomings of such situations.  It's time for us to leave and Tobias is storming.  It's mild, but it has been persistent the entire evening and he is visibly troubled.  The nurses and aides are aware and have helped us to reposition him, but comfort is not durable for Tobias tonight.

Hope over fear.