Day 6 (Sep 1)

Bottom line: Tobias showed uneven progress today, but he is exhibiting small signs of his brain coming back online.  His pupils are reacting to light sometimes and he fluttered his eyelids in response to some discomfort during a procedure to clear his throat.  The electrodes and two of the brain drains have been removed so he looks more like himself.  His facial swelling has also reduced.  An MRI showed definite brain damage, but the doctor thinks he will live.  Katja and I feel very happy about his chances for survival, but there is still grave concern about his future quality of life.  Thank you again for your care and concern. 

Details:

One of the critical tests for brain function is the ability of the brain to constrict and dilate the pupils in response to light.  This has been part of the battery of tests administered multiple times a day from the beginning.  It’s basically the same test that your family doctor probably performed on you with a penlight during your last checkup.  For patients in a neuro critical care unit a device called a pupillometer is used.  It looks like a GoPro on a stick with a flat ledge added to the bottom edge of the camera side that holds the bottom part of the eye from closing upwards when the nurse forces the eyelid open.  The pupilometer measures the size, latency, constriction velocity and dilation velocity of the pupil.  It only takes a few seconds and it calculates a score called the Neurological Pupil index (NPi) that ranges from 0 to 4.9.  A score below three means that the pupil is sluggish and anything above three is interpreted as brisk.  Tobias’ NPi scores have been zero from the beginning.  At some point the brain needs to communicate with his eyes again and I was concerned because of how the nurses reacted when his NPi scores continued to be zero.  With every non-responsive result we grew more fearful of the growing evidence of permanent brain damage.  Yesterday when the nurse was performing the NPi examination I told him that it would make my day if Tobias responded to the light.  For the first time Tobias’ left eye responded slightly and returned an NPi value of just over two.  The results have been up and down since then which is consistent with the ebb and flow of the brain as it recovers, but the left eye reaction is trending upward and his highest NPi score is just under 3.  The right eye is trailing the left eye and has rarely scored an NPi above zero.  This surprised me because I expected the left eye to be more affected since the right side of the brain incurred the bleed and the right side of the brain controls the left side of the body.

Another one of the standard tests is to elicit a coughing response from Tobias by “suctioning” his throat.  The breathing tube starts outside of his mouth and extends down into his throat.  The tube has what looks like a plunger at the end of a cord that normally sits outside of the breathing tube in a flexible plastic casing.  The plunger can be lowered into the tube manually by dropping the plunger through an opening in the breathing tube and feeding the cord into the tube.  The plunger and cord are sealed by the plastic bag arrangement so that they can’t be contaminated or allow anything to enter into the breathing tube.  Once the plunger has reached the bottom of the tube, the nurse pulls the cord in a smooth, meaningful motion creating suction that pulls up moisture and clears the tube.  It is apparently pretty uncomfortable for the patient and it causes them to cough.  Tobias has sometimes responded mildly and sometimes dramatically.  This looks frightening, but it’s a good sign that Tobias’ brain is coming back on line.  Today Tobias had a fairly significant response and moved his shoulders and head like he was trying to spit out the breathing tube.  In addition, for the first time he also fluttered his eyelids during his reaction.  You might be proud of your valedictorian or star athlete, but no more proud than we were today when our 21-year-old fluttered his eyelids.

Today was also a big day for us because we learned that Tobias has been sufficiently stable that the lead neurosurgeon ordered a second MRI.  The purpose of the first MRI was to assess the blood clot.  Now that the blood clot has been removed and the brain has had a few days to settle, this new MRI should give the doctors a view of the brain damage.  This news could be good, bad or tragic.  The MRI was performed in the morning before we arrived and we’ve been waiting all day for an assessment.  We were told that the resident neurosurgeon would take us through it, but due to several emergencies through the day he wasn’t able.  Finally at the end of the day, the head neurosurgeon came in to explain what they found.  He confirmed that there is definitely brain damage, but he thinks that Tobias will live and we should focus on the long term.  The bleed was extensive, but Tobias’ left side, frontal lobe and critically his brain stem appear to be healthy.  The right side of his brain in the area of motor skills appears to be the most damaged.

Tobias looks more like himself today.  The swelling has gone down and the medical staff removed the 22 EEG electrodes after finding no seizure activity.  The doctors removed two of the four drains from his brain.

We get very excited to see the small improvements in Tobias’ brain function, but we are reminded that there is a difference between lower-level brain functions that are necessary to sustain life and higher-level brain functions that determine the quality of life.  We are happy for Tobias’ progress because this puts him on the path to recovery, but we don’t know yet how far the path will lead.  I don’t want to imply that Tobias is out of the woods, but we are grateful that he at least is on the path.