Day 47 (Oct 11)

I'm staring at the 47 in the title with a slight feeling of disbelief.  It's hard to comprehend that we've been going at this for 47 days.  This is one of those weird experiences that makes you wonder where the time has gone and at the same time feels like you've been stuck in the same groundhog day forever.

We were concerned about how Tobias did through the night since he was storming hard when we left last night.  We were told that he did really well, but I'm skeptical when I know that Tobias had some element of storming through the shift, but we are told that Tobias was peaceful and calm the whole time.  It isn't credible and makes me question whether we are being given the real story.  Maybe they are trying to make us feel better or maybe they aren't taking care of Tobias like they should and they don't know how he was during the night.  The care has been very good and we are impressed with the doctors and nurses, but I'm old enough to know that even the best systems rely on people and human error can always be a problem.  It troubles me when the facts don't add up and my son's well-being hangs in the balance.

Tobias' well-being today was almost a carbon copy of yesterday's, except the highs weren't as high and the lows weren't as low.  The morning and afternoon were calm and storm-free.  The local weather forecast has called for stormy weather all day and the downpour finally rolled in during the late afternoon.  The hospital is above the city and has a commanding view over the valley to the ridge of mountains on the horizon.  Tobias' room is on the valley side and we have front row seats to nature's performances.  The dark clouds gathered and pulled untidy veils of rain over the city as the tempest approached from the far side of the valley.  Unfortunately nature's storm coincided with Tobias' own storming.  His heartrate bounced between 120 and the mid-140s in abrupt succession, but he didn't sweat or go as rigid as the previous day.  Katja spent most of her time tending to him in an effort to parry the worst of the storming by keeping him comfortable.  I sat next to Tobias' bed on the couch by the window, but spent my time working and assisting Katja when another set of hands was helpful.  We both articulated his legs and arms alternately.  We removed the existing positioning pillows and built them up again to support Tobias' body at different points.  I tried to shift his hips and his shoulders to relieve tired joints and give him a brief respite.  His relief, however, was always transitory and like Sisyphus, our efforts were rewarded with a temporary break in Tobias' heartrate before the boulder rolled past us down the mountainside and we had to start our toilsome journey to the top again. 

There were some bright spots during the day, however.  The speech therapist gave Tobias orange juice with a straw and he enthusiastically attempted to drink as much as he could.  He opened his mouth about half an inch, which is better than previous attempts that I've seen where his teeth separated by only a quarter of an inch.  The physical therapist put a cast on Tobias' left foot similar to someone who has broken their leg.  Tobias has been pointing his feet down and in for so long that they are at risk of developing contractures, which is when the muscles and tendons bind up.  One therapist said that they can even partially ossify and become almost impossible to recover.  The cast will hold Tobias' foot in the proper position, which sounds like a great plan, but I was concerned to see Tobias arch his foot hard during a storming episode so that his foot was pressing hard against the edge of the cast nearest his toes.  We called the PT who put extra padding on the cast for Tobias to protect his feet from skin breakdown along the area where he was pressing against the cast.  I would be fine with this arrangement during the day, but I'm concerned if Katja and I aren't there to protect him from harming himself by storming against the hard cast with his soft feet.  I made the decision to trust the PT's judgement, but I displayed my concerns clearly in front of her to ensure the she was considering the scenarios that could happen during the night without watchful parents present.  I really like (and trust) the PT and don't want to frighten her away from doing something constructive for Tobias because of a worried parent, but I'm nervous that Tobias' storming could create an injury due to the cast.

Katja and I took advantage of our newly acquired hoisting skills and loaded Tobias into his wheelchair all by ourselves.  We asked an aide to be present, but now we are comfortable moving Tobias in and out of the bed by ourselves without supervision.  This will be helpful in getting him outside more frequently.  We spent a few minutes with Tobias outside today, but it was chilly and we weren't sure of his feeding and medication schedule so we came back soon.  Katja took Tobias for an extended spin around the floor to give him some more movement exposure and to become more comfortable wheeling him about on her own.  Tobias got another shower today by the same aide who gave him the first shower.

We had two visits from the doctors today.  The first was during the regular daily rounds with the head doctor and the resident.  They also had a medical student in tow who was learning whether a residency in neuro rehab was what he wanted to do.  I asked whether the doctor thinks that the brain stimulant is the cause for the severe storming episodes and noted that amantadine addition and removal has coincided with the storming starting and subsiding both in the ICU and in the rehab hospital.  He was surprised that amantadine would cause storming, but he had already recognized correlation, although I don't think he was aware of the ICU coincidence.  He wants to keep the meds consistent for another day or two and then potentially add back amantadine as a single variable change to rule out whether it has impacted Tobias' storming.  It struck me how each patient is a new experiment in problem solving for the doctors.  There truly is only a limited playbook and the doctors' great knowledge has to be applied to each patient differently and individually.  It reminded me of when I had a problem with a system in my house and would change one thing at a time to deduce where the problem was coming from.  I thought that medicine would be more scripted than fixing an electrical problem.  Somehow the doctor's years of learning would enable him or her to see a patient's condition and know what needed to be done to put the patient right.  That isn't the case.  The doctors' knowledge enables them to tinker safely with the patient, but sometimes the doctor is downstairs flipping the light switch and it is helpful to him or her to have someone upstairs calling out if the light turns on.

The other doctor visit was more or less a social call from the resident and medical student to ask how we are doing and to see if Tobias was storming again.  He also wanted to report to us that he and the main doctor would be liaising with the "neurosurg" team to find out when Tobias' cranium will be glued back in place.  They are also considering removing the trache all together.  Tobias' has been capped for enough days that he has proven to them that he doesn't need the trache.  The trache will either come out this week or it will stay in long enough to be used during the procedure to replace the cranium.  Either way the cranium should be in and the trache out in the next few weeks.

Hope over fear.