Day 7 (Sep 2)

Bottom line: Tobias had a rough day today.  He is storming and he looked really uncomfortable.  His vital signs were too high in the morning but he was medicated and everything was brought back into an acceptable range.  At the end of the day he responded to a request by raising his thumb.  Tobias is in there!!

Details:

Tobias will turn 22 in 16 days.

We were reminded that Tobias' recovery will be littered with ups and downs as we arrived at the hospital this morning.  The nurse was not in the room but we are becoming adept at reading his vital signs and even with no practice, it was clear that Tobias wasn't doing well.  His heart rate and blood pressure were at 160 and he was sweating profusely.

Storming is a common response to a traumatic brain event like the one Tobias has experienced.  In effect the brain can still release excitatory neurotransmitters (like adrenaline), but has a hard time releasing the neurotransmitters to stop the activity.  The doctor explained to us that a normal body reacts by releasing neurotransmitters anytime an event happens.  Something as simple as putting a hand on someone's shoulder will release neurotransmitters.  This is part of the "fight or flight" response where the body evaluates inputs and decides upon a response.  The body releases the neurotransmitters, but quickly shuts them down when it recognizes what action is appropriate.  Storming occurs in victims of brain trauma because the brain isn't able to shut down the neurotransmitters.  They surge through the body causing an increased heart rate, fever, blood pressure, sweating and even a small but virulent shivering motion.  Storming frequently occurs in brain trauma patients and can last for weeks and sometimes even months.

The nurse returned and confirmed that Tobias' current condition is likely due to storming.  She also told us that it could be that his body is fighting an infection and his symptoms were also consistent with sepsis, where the body's response to an infection damages the patient's own tissues.  Later the doctor explained that sepsis is unlikely because Tobias' symptoms are "slam dunk, text book storming" and he has been on a broad range antibiotic for a few days. Storming is a positive sign in that it indicates the brain is coming back online, but it can result in injury to the patient if the symptoms aren't treated.  The normal procedure is to dial in the medications to keep the vital signs in a safe range so that Tobias' body and brain can rest and let the swelling further subside.  In any event, it looks very uncomfortable.

During the doctor's visit I asked if he would show me the MRI images and explain them to me.  The MRI shows a 3D view of the brain and the doctors are able to scan through the brain to study each part.  Before the MRI patients are given a contrasting agent containing a metal (gadolinium) that helps create a better view of the brain by the way it travels through the MRI's magnetic fields.  It continues to amaze me at the way technology has enhanced the doctors' ability to understand what is happening with Tobias and catch slight changes or issues that need to be addressed before they become a problem.  The MRI showed Tobias' brain with darker areas for normal tissue and white areas for swollen tissue.  To me and Katja it seemed like there was an awful lot of white on the screen, but the doctor said that it didn't look too bad and emphasized that the swollen areas didn't mean that the brain was necessarily damaged in those parts.  We heard the same phrase that we keep hearing... it will take a long time before we know things for sure.  The doctor said that an MRI in a few months will show definite areas of damaged or undamaged tissue.

He pointed out that there are very few swollen areas on the left side of the brain and that the damage would likely be on the right side of the body only.  As he scrolled through the layers of Tobias' brain he stopped to point out that the area of the brain that helps to form memories was still swollen.  He noted that this doesn't mean that it will sustain damage, but it could.  Tobias would still have access to his old memories, but may have difficulty creating new memories.  He scrolled up a little on his monitor and showed us another swollen area that is associated with motor skills.  This may explain why Tobias is less responsive with his left arm and leg, however, he has moved both of them is some positive motions.  The doctor also pointed out that only about one-fifth of this area was swollen.  It may be possible that Tobias can find work-arounds or retrain parts of his brain to replace the brain damage for motor skills.  No one can say anything for sure at this point.

Katja and I feel much better about Tobias' chances and we are beginning to allow ourselves to find humor in some of things happening.   For example, we both got to smile when the hematology doctor, during his interview with us to discover any genetic clues to the cause of the bleed, asked if we come from a family "where there are a lot of people marrying close relatives, you know like cousins marrying cousins".  The answer to that question is no, by the way, but it provided some comic relief to our day.  Overall today was not a good day for Tobias, however.  He didn't seem comfortable and his brain seems to have taken a step back.  His storming expressions must have been hard on him.  The doctor left a "port" in his right leg to provide easier access for future angiograms, but this means he can't bend at the waist and must lay straight in bed which hinders the ability to articulate his joints and give him some motion relief from lying still all day.  The nurses put a padded boot on his foot to protect it from taking too much weight but that just means that it must be painful over time.  He isn't as responsive to the nurses' pinching and his pupils aren't reacting like they were yesterday.  We know that there will be good days and bad days.  The weight we feel today is because we don't want Tobias to suffer.  We're fine supporting him with love and patience for the long term, but we don't want him to feel pain or discomfort along the way if we can avoid it.

A week ago right now we were at the county fair with Tobias, my mom, Emily, Chris and Eloise.  Tobias was goofing around popping wheelies with his grandma in her wheel chair and sneaking his ten-month-old niece portions of his snow cone so that her mom couldn't intervene.  Come back Tobias.  We miss you.