Day 20 (Sep 14)

Bottom line: Today started out like the last few days with Tobias' vital signs in control, but a little high and his storming fairly persistent, but mild.  The occupational therapist loosened up his core which helped to relax his entire body and resulted in his lowest heart rate, least amount of storming and most restful period since the injury.  Tobias spent a few hours last night back on the ventilator, but has been breathing through the T-piece for the remainder of the time.  His vital signs continue to trend in the right direction, but his responsiveness is still AWOL.  He remained in the ICU today and we are hopeful that his condition will continue to improve.

I moved my family several times for work assignments.  Tobias hated every move.  When he was little I tried to explain why we moved and all he understood was that it had been my decision.  "Your decision to move was a dumb one" he confided in me as a three-year-old.  He didn't like moving as a teenager because he missed his friends.  The upside is that he has experienced things that he couldn't have if we would have stayed in one place and he has made friends from all over the world.  In the end Tobias realized the value in his nomadic adventures and he is glad that he has friends from each new location.  These friends are repaying his friendship now by sending their well-wishes from around the world.  Today we set up the bluetooth speaker and instead of Mozart, we played recorded messages from his concerned friends.  Tobias didn't give any indication that he heard them today, but we'll continue to share his friends' voices in the hope that someday he'll respond.

Today was another low-level storming day for Tobias.  He stormed from the morning through the afternoon, but the level of storming was fairly low.  His heart rate was in the 100-110 range for most of the day.  The nurse saw it spike to 135, but it was quickly back down to 110.  His blood pressure was good all day and ranged from 110 to 120.  I think that the medications have got his vital signs under control, but his muscle rigidity during the storming is still very tight.  He doesn't seize up as tightly or as frequently as during his peak storming, but he still looks very uncomfortable.

Two events happened in the early afternoon, however, that gave Tobias a break from the storming.  The first event was another visit from the occupational therapist.  She puts Tobias' helmet on and maneuvers him into a sitting position in his bed.  From there she bends him at the waist and works with his shoulder joints and leg joints to get his core flexible again.  Once she was done with him his body was relaxed and pliable.  Storming can be caused by pain and we think that part of it may be initiated by the discomfort Tobias feels from lying motionless in bed.  I move his leg and arm joints, but it takes a session to his core to see real benefits.  The other event that contributed to his relaxation is a little bit more personal.  Back when I was a young father changing diapers, we used to refer to an event of this magnitude as a "blowout".  At this point I will forego my conventional approach of describing the event in great detail and leave the particulars to the resourcefulness of the reader instructing only that taking great artistic license in the exercise of one's imagination would not be inappropriate.  The nurse explained that immobile patients have a difficult time with the normal digestive process and the resulting pain and pressure can instigate and exacerbate storming episodes.  The release of said pressure can relax the patient and stop the storming.  We aren't sure which event had the greater impact since they both happened pretty much concurrently, but afterwards the storming stopped, Tobias' HR dropped to 85, the lowest in several days, and his blood pressure dropped to 100.  Tobias looked more restful than we have seen him and we are hopeful that this is an indication that the storming is starting to recede.

We were impacted by Covid again today, but this impact was minimal.  Tobias had been in a room that is equipped with a negative-pressure pump.  This forces air out of the room through a large pipe in the ceiling.  The only way for the pump to get air is to pull it from the hallway so air can only move from the corridor into the room and not vice versa.  This way pathogens cannot make it into the ICU ward.  Many of the NCC ICU rooms are equipped with a negative-pressure pump so the rooms are used as the Covid overflow rooms.  Tobias was moved to a room that is not equipped with a negative-pressure pump so that his room can be used for an incoming Covid patient.  The new room is smaller and there is no couch for Katja and I to sit on.  We sit on chairs that are placed to the side of Tobias' bed so we can see him and his monitor at the same time.  In the first room we sat in the back of Tobias' equipment console and could only see the back of his head and no monitor.  I don't know how long Tobias will be in this room.  We expected to be moved to the Acute Care ward on Sunday so every day we are still in the ICU is a win.  The nursing care and the amount of doctor time that Tobias receives here is much better than on the floor.

Tobias frightened us about 30 minutes after he had been moved into the new room.  Katja and I were alone with him in the room and Tobias started making noises like he was drowning.  The processed air that Tobias receives is warmed and humidified to help remove secretions from his lungs.  The warm water vapor condenses on the sides of the tubes and collects in liquid form in the low points of the tubing.  Occasionally we need to lift the tubes to move the water to a drain so that the air can move unrestricted through the tubes.  Tobias sounded like water had collected directly into the tube leading into his trache and we worried that he might be drowning in his own tracheostomy.  I rushed to his bedside to find the problem and the sound disappeared.  While I was still checking his lines he started to gulp for air like he was hyperventilating.  Katja and I looked on helplessly as he desperately gasped for air.  I pushed the nurse call light and debated whether Tobias had enough time to wait for the nurse to notice and arrive.  Tobias stopped gulping for air in short succession and gulped once every ten seconds, sometimes longer.  In between gulps it looked like his brain wasn't giving his lungs the signal to breathe because he lay motionless until his body reached some critical trigger point and he gulped for air again.  We were worried that he was in crisis and I followed the tubes and lines trying to see if the nurses had connected them incorrectly in the new room.  Finally we knew that we had to act before Tobias stopped breathing altogether and Katja went to the nurses station to flag down a nurse.  The first nurse who came in was a student nurse and he looked more frightened by what he saw than Katja or me.  He left immediately calling behind him that he would send Tobias' nurse.  This put us on high alert and we watched Tobias and the monitor closely to detect where we might need to intervene.  His vital signs on the monitor still looked okay, but he was visibly in serious trouble.  His nurse arrived and gave us a cheery "hi, what's up?"  I explained briefly and at that moment Tobias gulped for air again.  The nurse smiled, looked at both of us and said, "oh, those are just hiccoughs.  It happens frequently with brain injury patients."  She showed us where Tobias' abdomen was still moving up and down with his rhythmic breaths and reassured us that he was completely okay.  The funny thing is that it still looked so alarming to me that I didn't feel silly at all.

The doctors are checking if Tobias can continue breathing just on the T-piece.  The night-time attending doctor put him on the ventilator last night for a few hours to give him a break, but he was on the T-piece by the time we arrived in the morning and he stayed on it all day.  He is making slow progress with his vital signs and his storming seems to be diminishing.  The doctor team came through on rounds just as we were preparing to leave and the lead doctor told us that they wanted to keep Tobias protected from storming for a week or two before they put him back on the brain stimulants.  His forehead shows that his brain swelling continues to recede and we are happy that he is under less stress than during his peak storming.  He is still non-responsive to verbal commands and his pupils are barely responsive.  We hope that his mind will bounce back once it has had a chance to relax and recover.  We would like him to be cognizant tomorrow, but we know that this will be a slow process and we are thinking in terms of weeks not days.

Hope over fear.