Today marks the 4 week point in the hospital.  We definitely didn’t anticipate the events of the past several weeks or the endurance required, but we remain thankful.  Dad continues to progress each day.  Some days with setbacks, but overall we are moving forward.  His liver remains the chief concern with his Bilirubin peaking last week at 26 and now working it’s way back down to 20.8 as of two days ago.  We will get new numbers again today, but all indications are that he is trending in the right direction.  His skin doesn’t give that indication as he is extremely yellow with a bright red rash mixed in for a painful look.  They took a biopsy yesterday to try and determine the cause of the rash.  It is most likely a reaction to a medication, but we won’t know for a few days.  He also continues to have some episodes of VTAC (heart racing) and episodes of a very weak pulse.  Overall he is on less medication to treat his heart and blood pressure.

We have experienced phenomenal care by the nurses and the doctors over the course of these many weeks.  Yesterday marked the first day where his care was not to the level we have grown to expect from the U of M.  He was scheduled to get a tracheotomy yesterday after already waiting a few days.  They weren’t able to do it because his nurse turned on his blood thinning medication for no explainable reason.  The main issue is not that a mistake happened, but the avoidance of the issue and the unwillingness to take ownership of it.  The schedule is full for today, so we are forced to wait until tomorrow.  This is difficult because the breathing tube is clearly the thing he despises and is also the reason they need to keep him sedated.  Also, the fewer medications hitting his liver the better.  Today is a new day, we have a new nurse, and we have a plan.  Still a long way to go, but we are staying the course.