Day 41 (Oct 5)

If you learned to drive a manual transmission, you have a pretty good idea of what this brain injury recovery process feels like.  You think you're doing everything right.  Clutch engaged, shifter placed in first gear, press on the accelerator while slowly easing off on the clutch, car starts to move forward slowly, continue to give gas and ease off the clutch, car moving faster, process continues, you feel the exciting velocity and then wham.  The car lurches to a stop and you're lucky if you don't hit your forehead on the steering wheel.  That pretty much sums up the last two days.  I was encouraged at the progress Tobias was making and keen that the doctors were putting him back on amantadine (brain stimulant) while dosing down the narcotic (gabapentin).  Things were looking better and I was anticipating further progress and (dare I say it out loud?) hoping for acceleration in his recovery.  Wham.  He started storming yesterday evening and gave us a brief respite in the night and morning before picking up the storming where he left off yesterday.  His heartrate doesn't get as high as when he was storming in the ICU, but he is on a higher dose of the beta-blocker that has a calming effect on the heart beat.  He topped out at 140 today, but spent a lot of his storming in the one-teen's and 120's.  His profuse sweating, rapid breathing, stark rigidity and ghastly shivering is difficult to watch because he looks immensely stressed.  No fun.  No fun at all.

Due to his storming, he didn't have the same level of success with his therapies today as the last two days.  He doesn't tolerate the wrist splints or the boots while storming so his hands and feet are starting to adopt odd postures.  Luckily when he rests, his hands are still normal, but his feet stay pointed.  The PT and OT said they were making his custom splints and feet casts, but they haven't been able to finish them yet.  He was awake today for only a few minutes where we could interact with him and although he was able to move his thumb a few times, he was less responsive than the promising build-up of the past few days.  Wham.

Today was a difficult one.  Tobias was distressed and our efforts to help him were outdone by his storming.  It's just so painful to see our child suffer so much.  The doctors are re-evaluating his medicine.  They are going back to the original dose for his gabapentin and they increased the beta-blocker.  They were even discussing putting oxycodone back on the menu.  It feels like we are going backward in order to go forward.  We are still hopeful and trust the process.  The process of learning to drive a stick shift worked out pretty well eventually and so will Tobias' recovery.

Hope over fear.