Day 36 (Sep 30)

Bottom line: Yesterday evening we thought Tobias was in danger of a re-bleed.  The nurses and doctor rushed to his room to check on him and in the end he had another CT scan to view the blood in his brain.  He ended up being okay and the doctor wasn't sure why he had shown the symptoms that looked dangerous.  Today was a calm day.  Tobias' vital signs were all in safe ranges and he opened his eyes more than yesterday, but he is still too drowsy to participate meaningfully in his therapies.

Detail:

I mentioned in an earlier blog that comparing this experience to a roller coaster ride is unfair to roller coasters.  This experience is more similar to the ruthless carnival ride that spins so fast that the riders' heads are pressed sideways against the backing grate.  Last night after the best day we've had for weeks, the ride spun out of control again.  Tobias had a calm day, successfully transitioned to breathing through his nose with the trache capped and had flexible arms again.  He did have high blood pressure at times during the day and no one was able to get him to wake up for more than a few seconds, but overall it was a restful day for all of us.  That is until we were about to walk out the door when 9 o'clock rolled around and visiting hours ended.  

I was already on my way out the door and looked toward Tobias as Katja went back to have one last tender word with him.  She and I both noticed that his head was the color of a boiled lobster.  His heartrate and oxygen were still fine, but his color looked alarming.  We knew that his blood pressure had been high at times during the day so Katja pulled up his eyelid and almost recoiled at the size of his pupil.  It was so large that it was difficult to discern Tobias' eye color.  Katja immediately hit the nurse call button and wondered aloud what we should do.  I told her to go get a nurse immediately.  She went right down the hallway and I went left.  I found the nurses and explained our concern.  They returned with me and measured his blood pressure at 180/110.  Maybe it was my visible concern or they read the situation as desperate, but they got more nurses involved and called the attending resident doctor.  After the initial checks were completed everyone moved around with nervous energy looking for something to do, but finding nothing.  It frankly didn't make sense that his heartrate would be so low with such a high BP and the redness of his face made all of us uneasy.  The attending resident arrived from downstairs and jumped into the fray.  He checked Tobias' pupils and then had a nurse hold both eyes open so that he could compare them.  He quickly ordered several blood tests and a new CT scan to check for a re-bleed.  By this time Tobias' coloring had returned to normal, but his pupils still looked like two black marbles in the middle of his eyes.  The doctor told me that he would come discuss Tobias' condition with us after he finished expediting the CT scan order.  I went in search of Katja who by this time has learned that she feels more comfortable not being present when Tobias is in crisis and people are handling him roughly.  Katja didn't come back in the room after we got the nurses involved and we found each other in the hallway.

The doctor spoke to us for the second night in a row, but treated us with respect and consideration.  It's unusual to have family raise an alarm that requires the resident doctor's intervention but he showed no sign of irritation at our second conference in so many days.  He said that he wasn't concerned for Tobias' state, but he recognized that he was far enough away from his baseline that quick action was prudent.  He said that Tobias' pupils were slightly reactive to light and that even though they were quite large, it is important that they were the same size and responding together.  That was good news to the doctor.  Non-responsive pupils of different sizes would have been more alarming.  The BP wasn't so high as to raise a real concern, but if it continued, he would authorize medication to bring it down.  He ordered the nurses to check the BP every 10 minutes for the next 30 and then every 30 minutes after that.  He told us to go home and that he would call us when he received the results of the CT scan, but that it would like be at least an hour or two.

I felt that Tobias would be okay, but his large pupils and complete unresponsive state of his body concerned me.  He wasn’t responding to the pain input the nurses gave him.  I feared that a re-bleed may have occurred.  Katja was taking it worse than I was and I think Tobias died again in her emotions.  I also felt this car wreck of an emotion several times in the first few days when I thought that Tobias wasn't going to make it.  It's a sudden blindsiding impact where you feel your world turning sideways.  You can't react or adjust because the whole space where you exist is disoriented and twisting.  You just hold on and hope that you land safely.  When the motion stops you're facing what you think is the fact that your son will be taken from you and you remember what he did as a child and how you love him and what joy you felt to see his future self, future wife, future family.  It's a rough handling of emotions that you keep in a well-protected space because they have come to define your purpose and meaning.  But they aren't safe and they are going to be taken from you.  Sadness becomes a pain medicine that you long to swim in to dull the emotions that hurt you.

We arrived home and received a call at 10:45 from the doctor.  He wanted to let us know that the blood labs returned all normal results.  This was good news.  We didn't hear back about the CT scan so I called the nurse to check on Tobias when I woke up at 5am.  Tobias was fine.  His blood pressure was normal again and the CT scan showed no new bleed.  The doctor had told the nurse that he wasn't sure why Tobias had been presenting like he did the night before, but his vitals were in acceptable ranges.  I woke Katja and let her know that Tobias is okay.  The doctor called about an hour later to let us know about the CT scan.

We've had highs and lows over the past several weeks, even when we knew Tobias was going to live, but last night was a scare that we don't want to repeat.  A brain recovery is a fickle thing.  There are no promises and hardly a roadmap to follow.  You know that the path is a long one, but you hope that the road is gentle and turns generally in the right direction, and that you won't get waylaid on your journey.

After last night we weren't sure what we were going to experience today.  In short it was much like yesterday, except a little better because Tobias had his eyes open a few times and a lot better because he didn't finish the day by pulling the fire alarm in his head.  The doctor dropped in to see Tobias again today and said that the sleepy medication will be reduced again tomorrow.

Hope over fear