Day 32 (Sep 26)

Bottom line: Sunday was the slow day in the rehab hospital that we expected.  No therapy appointments for Tobias.  He had a rougher day than the last two and spent much of the day mildly storming with high blood pressure and stiff arms and legs.  The stiff legs were a new development.  Normally his arms have been stiff, but the legs have remained flexible.  The doctors weren't actively present over the weekend and we are hoping that tomorrow the medication can get adjusted so that Tobias storms less and is more alert for his therapy

Detail:

As predicted, today is a slow day in the rehab hospital.  There are no scheduled therapy sessions and Katja and I are watching over Tobias.  The nurse and aid come in every two hours or so to reposition the pillows that distribute his weight so that he doesn't develop any pressure sores.  Protecting Tobias from pressure sores is difficult because there are so many potential points of failure.  Tobias can't tell us where his body hurts so it's up to us and the nurses to detect any risk areas before his skin breaks down.  The combination of the sweat and the immobile position create risk areas anywhere that takes pressure.  We try to keep even the sheets under him free from folds so that his weight isn't focused on any lines or points.  He developed a pressure sore on his left ear from laying on it the whole time and a sore on his neck where the trache collar rubbed on the left side of his neck.  Both of those points are now healed, but it takes much longer to heal than prevent so it is easy to paint oneself into a corner where areas need to be free from pressure in order to heal so his body weight has to be supported in a smaller and smaller area.  The back of his left shoulder and neck currently sport a raw-looking rash from the moisture that was trapped against his skin for the first several weeks.  

Tobias favored putting his head to the left side since the injury and it was never fully recognized or addressed and now he can't even move his head to look to the right.  He constantly pulls his head to the left.  The nurses tried to coax his head back to straight-up neutral by putting pillows higher on the left side, but his predisposition to pull to the left is so strong that gravity alone isn't enough to keep his head in place.  He just turns his head against whatever pillow is on his left side.  The only thing that has worked so far is the foam donut around his ear and a rolled up pillow that buttresses the top of his head and prevents it from turning left.  We put Tobias in a wheel chair today for about an hour.  The wheel chair has a shallow headrest which makes it impossible to buttress his left side so I sat for an hour and held his head in place.  It was surprising to me to feel the pull of his neck turning his head to the left.  I'm concerned that his indicates some muscles problems from leaving his head in the left position for so long, but it could also just be the same brain damage that causes his arms to stiffen up is also turning his head to the left.  I've noted a question down to ask the physical therapist and the doctor on Monday.

No one really know what causes the storming for Tobias at this point.  The storming isn't particularly dangerous, since his heart rate rarely goes about 130, but I think it will be a hindrance for his rehab.  They are likely not going to be able to use the brain stimulant medications when he is fighting the storming symptoms.  His heart rate isn't high, but the spasticity in his arms is problematic.  The muscles in his arms are contracted for most of the day it seems.  His left arm is also prone to posturing, which is driven by the spinal cord not getting the right signals and turning the arm and hand so that the thumb rotates  downwards and points away from the body with the elbow pointing upwards.  It looks unnatural.

Katja and I have spent most of the day trying to nurse Tobias out of the storming cycles.  We are truly helpless in this effort and the best course may be to accept that the storming is chemically driven and needs to be chemically treated.  But since that isn't guaranteed, we study Tobias and try to remember the conditions that were present when the storming started and when it ended.  Today we had the nurses' aids dress Tobias in his pajama bottoms after his bed bath in the hope that the familiar touch of the gentle flannel on his skin might trigger positive activity in his brain.  Tobias' chest is also covered with a 10-inch-wide elastic bandage called a "binder" that protects the feeding tube that enters his torso in its geographic center.  Without the binder Tobias could easily damage the tube by getting entangled in it or rubbing across the entry point with his slow, but surprisingly powerful spasmatic movements.  His left arm occasionally wanders from his side across his body in a reluctant, hesitating motion like he's compensating for pain elsewhere in his body.  His muscles tighten and contract dragging his arm across his torso scraping it like a glacier over a mountainside.  It's easy to see him damaging the feeding tube that is just a rubber tube disappearing into a hole in his abdomen.

Tobias stormed with a lot of sweat around 5pm.  This happened to be the time when his nurse came to check on him.  She thought that he might just be too warm so we removed the pajamas and the hospital gown.  We removed the boots and socks from his feet and the compression wraps from his calves that pump air alternately to each leg to simulate the benefit of walking to his calves.  We laid the bed flat and removed the pillow and towel from behind his head.  We removed the pillow buttress from his left side so that his head could find its natural position and unwrapped the binder from around his chest.  We helped the nurse to exchange the absorbent pads that Tobias lies on so that his body would have a dry base to lie upon.  This is done by rolling Tobias to one side and laying the pad flat up to where it meets his body.  Along the body line the pad is rolled tight and then Tobias is rolled to the other side.  Someone reaches underneath him and unrolls the other half of the pad so that it is now flat beneath him.  The last step in helping Tobias to cool down was the nurse changing out his "brief", which is an adult-sized diaper.  Tobias seemed to be more comfortable and he stopped sweating, but his heart rate remained in the 110 - 120 range.  It surprised both Katja and me how much muscle mass Tobias has lost.  His legs have visibly atrophied.  His chest and arms are still large, probably due to the constant flexing, but they aren't the same healthy musculature that he had before the injury.  Tobias, unfortunately, looks a little like an unkept property that nature is starting to reclaim.  His body is slowly losing its former vitality and his hair is growing back together with his beard and moustache that make it look like the garden needs tending.  This is all to be expected, but knowing it was inevitable didn't make it easier to see.  I didn't find his appearance stressful, however.  I know that this is one situation where it's going to get worse before it gets better.  Muscles disappear quickly, but can also be rebuilt in a relatively short period.  Tobias is well-positioned to recover.  He's in an excellent care facility and he is being given rehabilitation therapy even when he is only minimally responsive.   The alternative would be to have him in an LTAC with less care and less therapy.

Both Katja and I feel that Tobias was doing better in the Neural Acute Care ward than here in the rehab hospital.  To be fair, Tobias stormed again during his last day in the NAC so potentially this was just the start of another storming period, however, it feels to us that the medication mix isn't as effective as it was in the NAC.  We have also noticed that the nursing care isn't as good as it was in the NCC ICU and the NAC.  The nurses forget to reposition Tobias occasionally.  We've found a few instances where Tobias wasn't positioned properly and the boots to protect his feet haven't been used correctly.  Tobias is supposed to receive oral care every four hours, especially because he has a yeast infection on his tongue, but we just realized that we haven't seen it performed today.  It's even more dangerous because one of the aides holding Tobias' head during a hoisting procedure to get him into the wheel chair didn't know how to properly position his head.  The nurses have been kind and listen to our concerns, but we feel that we are finding too many gaps in training and mindfulness.  We are thinking about how to bring this up with the attending rehab doctor.  He'll be back tomorrow.  It feels to us like the nursing staff at the university hospital run a tighter ship than here.  The therapy disciplines have all seemed to be good so far.  We hope that the doctors will get the medication correct so that Tobias will stop storming, reduce his spasticity and get more from the therapy.  We have only seen Tobias move his thumb once in the time we've been in the rehab hospital.  We've been in the rehab hospital over the weekend, however, so we expect that when the doctors are back tomorrow that our experience here will improve.

Hope over fear (but watch everything very carefully)