Day 56 (Oct 20)

Tobias has had several days of increasing alertness, his speaking has been getting more frequent every day and his storming has been decreasing along with a heart rate that keeps forgetting it belongs to a brain injury patient and beats normally for hours on end.  His cranioplasty is scheduled for Friday, which with some luck puts him back in the rehab hospital on Monday and kissing goodbye to his trache a few days after.  All of this points to an acceleration of his rehabilitation. Combine the above with the oft-repeated maxim that a brain on the mend waxes and wanes as well as the one about the journey to recovery is beset by many setbacks and you can do the math yourself about how Tobias' day went.  Spoiler alert: It went poorly.

We were suspicious yesterday when he seemed less alert and more out-of-sorts than usual.  His responsiveness was very low and he couldn't keep his eyes open despite our frequents efforts to wake him up.  His mouth and cheeks drooped more and he held his eyes tightly closed as opposed to gently closed when he is truly resting.  His coloring looked pale and weak, but it is hard to know what is Tobias not feeling well and Tobias not being able to move because he has a serious brain injury.  Since we spend most of each day sitting with Tobias, we are accustomed to his normal behaviors and demeanor, but it's only after the fact that all the signs come together to reveal what I feel I should have recognized earlier.  Katja is better at pinpointing when something is amiss and she has been asking about the increase in Tobias' unproductive coughing over the past three days.  We hear that he has some gunk in his throat, but he is unsuccessful in uprooting it.  He doesn't seem to have the strength to force it out.  The respiratory therapists have checked him multiple times and have suctioned his trache, but have not found much mucous to remove.  The suctioning, however, removes mucous from his trache down into his lungs and the mucous appears to be located above the trache and below his mouth.  They have listened to his lungs, but haven't found anything concerning.  We have a special device used to clear blocked nasal passages and have removed snot in quantity, but it won't bring up any material from below the nasal cavity.  We don't know why Tobias has a build up of mucous or why he can't dislodge it, but it was a sign that something was working against him.

The speech therapist performed a swallowing test on Tobias today to validate whether he is swallowing things down the right pipe.  A camera is inserted from his nose into his throat and substances of various viscosities are injected into his mouth so that the resulting swallow can be recorded visually.  The speech therapist observes whether the liquid is swallowed through the esophagus or whether it is "aspirated" into the lungs.   If Tobias showed that he was swallowing properly, we could start giving him more juice and broths.  Unfortunately Tobias isn't ready yet to start eating orally.  His swallow is strong, but it isn't coordinated properly.  Normally a swallow starts by contracting muscles at the top of the throat and then moves downward pushing the contents into the stomach.  Tobias' swallow starts below the top of the throat and so some of the material is forced upward as well as downward.  This puts the material in the wrong areas and makes it harder to direct it through the esophagus.  Sometimes material is forced into the lungs.  This isn't serious with small quantities and the little bit of water, crushed ice and orange juice that the speech therapist or Katja and I have given Tobias orally will be metabolized without a problem.  This result surprised the speech therapist given that Tobias has never coughed during the therapy sessions when he ingested something.  The camera doesn't lie, however, and too much of the liquid administered during the test was aspirated into Tobias' lungs.  We were told that this is normal for a patient to fail the first swallow test.  It can take some time for the body to relearn how to swallow effectively. 

Today Tobias' blood work revealed a high value for white blood cells, indicating that his body was rallying to fight an infection.  The doctors checked Tobias for a urinary tract infection, but the test came back clear.  The x-ray technicians were called in to perform an x-ray on Tobias' lungs to check for an infection, but came back with an inconclusive result.  Tobias had some funny coloration on the central part of his lungs, but it looked more consistent with the aspirated liquid from the swallowing test than a pulmonary infection.  The resident doctor told us about the x-ray, but he wasn't sure what the main rehab doctor was going to check next in order to understand what is driving the higher white blood cell count.  Tobias' fever is slightly elevated at 99.  It appears that Tobias has an infection that is affecting his ability to stay awake and respond, but we aren't sure where the infection is.

This is a step back for Tobias, but it doesn't appear to be serious at this time.  It may, unfortunately, delay his surgery on Friday, which would be disappointing, but we'll learn more about Tobias' condition tomorrow and whether or not his cranioplasty might be postponed.

Today wasn't all bad, however, Tobias was able to vocalize well and gave me the strongest "yes" that I've hear from him so far.

Hope over fear.