Day 65 (Oct 29)

One of the brain injury maxims that we hear over and over is that a brain injury patient will wax and wane on their recovery journey.  Yesterday was a wax, today was a wane.  Tobias seems to have slept through the entire day and his head is tilting hard to the left still.  His heart rate has been over 100 for much of the day and is now between 110 and 120.  There was a period of about an hour where his was relaxed and his heart rate stayed in the 70s and even dropped into the 60s.  He isn't sweating or posturing, but his heart rate is higher than where it had been trending.

The speech therapist met with Tobias before we were in the hospital and she reporting that he was difficult to keep awake.  He was only alert for 10 minutes of the 45 minutes session, but he did vocalize a loud shout at one point.  She isn't sure why he did this and we haven't heard of it happening before.  It was probably a reaction to a pain stimulus, she thinks, but she couldn't clarify what pain stimulus he had experienced.

The first PT session was shortened due to getting Tobias ready.  The PT only had time to perform the CRT (Coma Recovery Test).  Tobias did worse than he did the previous test, but this is in line with a waning day and a different person administered the test, which, although it is supposed to be objective, has an element of subjectivity to it.  Today's examiner may have tighter tolerances to the requested tasks.  The score was a 14 today versus a 16 on the last test so the difference isn't much to be concerned about, especially because Tobias was out-of-sorts today.  His eyes have been closed and I haven't heard him answer anything verbally.

The afternoon PT involved cutting off the existing cast, checking the leg for skin breakdown or other signs of injury and putting a new cast back in its place with a slightly more aggressive angle to the heel joint.  The idea behind the successive casting is to slowly force the position of the foot back to a normal angle relative to the leg.  The idea seems logical, but the casts are probably uncomfortable for Tobias.  First of all the cast is forcing his foot slightly past the point where his foot wants to be and won't let it relax.  Also when his brain signals his foot to move into the wrong position, it pushes against the cast.  This causes some irritation and the cast itself is heavy and uncomfortable.  Tobias can't express himself so we don't know if the cast is an issue for him or not.  Tobias is sporting a cast on both legs now so we'll get to see if he registers a particularly high level of discomfort over the next few days.

When Tobias returned from the casting process, I backed his wheelchair up to the chair I'm using and gave him the longest massage that I've ever been a part of.  I carefully massaged his back and neck muscles for at least 90 minutes.  For a time I think it was helping.  The muscles and tendons pulling his head to the left loosened and he was able to keep his head in a more neutral position.  Maybe I went on for too long, maybe I manipulated the wrong tissue or maybe his brain decided that the relaxation time was over because his head moved back to the left and it was the same as when I started.  I continued the same massaging techniques, but I wasn't able to get his head to swivel without resistance again.

Tobias may also be experiencing pain because he has developed a rash on his inner thighs.  It's a natural consequence of wearing briefs and not being able to tell us when he needs to use the toilet.  We noticed that he had urinated in his brief.  When we changed it, we kept the inner part of his legs open to room air for an hour.  We set fans up to exchange the air in that area as frequently as possible without making it cold for him.  At the end of the airing out, we applied the adult, hospital version of Desitin in liberal quantities and made a mental note to ourselves to give his inner thighs more open air time when he is lying in bed.

Hopefully tomorrow will be better than today.  Tobias' eyes are open right now, but he isn't responding to my voice like he did yesterday.  He doesn't answer any questions or look at us.  He isn't moving his thumb or showing that he knows we are here.  Today is a waning day.

Hope over fear.