Still in ICU

James x-ray looked a little better again this morning and his oxygen requirements remain the same, but he continues to need an awful lot of suctioning.  With that in mind they will be leaving him on the ventilator another day and will reevaluate tomorrow.

 

James is looking worse today then he has the last few days.  We are uncertain why this is.  It could simply be that his body can no longer take the toll of the continous high fevers that we are fighting to control.  It could also be that he is feeling unwell because they are sort of trying to dehydrate him.  Usually they calculate what goes in and what comes out of him each day and want to see a positive balance.  They are now looking for a negative balance, where more goes out then comes in.  Since he is not doing this well on his own he has been receiving medication to help him pee more.  By doing this they hope to remove as much fluid as possible from his body, especially his lungs, but at the same time monitor closely to ensure that he does not actually become really dehydrated. 

 

James almost has a look like he's given up.  He is so patient and good as they suction him, enduring everything without a fuss, but to some point it's like there's no fight left in him.  I noticed this yesterday when they got him ready for transport to have the PICC Line put in.  Usually once they start getting all the portable stuff out he gets worked up and anxious about where he's going and what's going to happen.  Of course now he cannot talk to express himself, but he didn't even shake his head no or show any concern.  Again today when we were moved to a new room he just sat there with  no indication that he cared what was going on.  He's a real trooper and everyone has told us how they've never had such a good kid before, especially for suctions.  We just hope that he can soon have the freedom to talk and breath on his own again.

 

We lost our nice private ICU room today.  James was in an isolation room, but someone else with a greater isolation need required his room and so they transferred him to a ward as his isolation is just contact isolation due to his previous c.diff.  This means that they have to wear gowns and gloves (which they don't do anyways) when working with him, but that he does not have an airborne issue that could spread to others, therefore making it okay to put him with others.  I suppose we've enjoyed quite the luxury so far, so we can't complain, especially considering we still have our room on the floor and a nice private place to sleep and shower.  The biggest downside to being in a ICU Ward Room is that when the nursees do shift change we have to leave the room for patient confidentiality reasons.  Thankfully James does not get too worked up if we leave him, so hopefully this won't stress him out too much.