Day 43 (Oct 7)

 

It was another busy day with lots of activity and a new development.  Katja was the hero in my eyes and despite the lack of improvement, we think the doctors have identified at least part of the problem plaguing Tobias over the past two days.

Tobias stormed most of the day as he has for the past two days.  His heartrate reached over 150 again, but overall his heartrate and storming symptoms were lower than the scary levels of yesterday and the day before.  He was able to participate in therapy because his cyclical storming behavior fortunately landed on a "rest" period when his therapists came to the room.  The therapists administered the Coma Recovery Scale test again and his score improved to a 7 today.  He was pretty spent all day when he wasn't storming because the storming is so exhausting for him.

The Coma Recovery Scale is a test given to patients to determine and track their level of consciousness.  The therapist(s) check the patient's ability to respond correctly to 23 items covering auditory, visual, motor, oromotor, and communication functions.  The patient is asked to "move your thumb", "move your index finger", "look at me" and then is given points based on whether the response is correct.  A score of 10 indicates that the patient is conscious.  Tobias' scores have been increasing, but he is still classified as "not conscious".

The hospital psychologist came to speak with us today.  She wanted to meet us and make an appointment to talk with us individually about what is happening to Tobias and how that can impact our mental health.  Katja was out for a walk when she came so I spoke with her and she'll reschedule to speak with Katja.  My discussion was interesting since I've never spoken with a mental health professional before.  I understand the benefit of speaking to a professional to work through difficult issues, but I don't recognize what I need to discuss in my current situation.  The situation is odious, but I feel functional and proactive.  I think I’m okay.  I asked what behaviors or feelings to watch for that would indicate a person would benefit from therapy and she told me to look for signs that I’m not myself.  I realized that I get a significant emotional and psychological benefit by expressing myself through this blog, so in a way, if you are reading this, you are acting as my therapist.  Thanks.

Katja noticed that Tobias' face looked less healthy two days ago and she has been asking the medical staff about it.  She recognized when no one else did that his cough was less vigorous and less productive.  His oxygen levels have dropped over the last two days from in the mid-90s to 88 (given as a percentage) and sometimes below, but no one has been able to give us a good explanation.  The resident doctor told us that it may point to pneumonia since the lungs would be less efficient, but he, the nurse and the respiratory therapist stethoscoped Tobias’ chest at different times today and confirmed that his lungs sound fine.  His trache has been capped for days so it isn't easy to suction him and no one saw the need since his cannula has been clear and he has always had clear breathing passageways.  Today Katja pushed for a respiratory therapist to come and suction Tobias because she felt that she could hear some congestion in his breathing.  When the RT suctioned Tobias he pulled a large amount of green mucous out of Tobias’ lungs.  The resident doctor had just finished telling Katja that he was uncomfortable ordering an x-ray to check for pneumonia on Tobias' lungs because of the other radiation Tobias was subjected to today.  When he saw the mucous, he immediately ordered the x-ray.  He explained that it is hard to determine lung congestion from the front and since they can't listen to Tobias' back, it is difficult to know if his lungs are really clear.

One x-ray later the technician told us that Tobias has pneumonia.  We don't know where it came from, but at least knowing he has it explains the low oxygen levels in his blood and helps to explain why he has had such a difficult two days.  Pneumonia can be treated.  Tobias is lucky to have a mom so attuned to his needs, expressions and behaviors.

Hope over fear.