Greyson was stable overnight.  He continues to have some sedation issues and wakes up agitated.  They are trying to balance keeping him comfortable with keeping him ‘awake’ enough to be triggering his own breathes and exercising his body a bit with movement. 

The tests for the viruses that his doctors want to run were unable to be sent out over the weekend so they were sent out this morning.  We will hopefully have some results from those today. 

The doctors would like to work on weaning his ventilator today and also try to do a couple of CPAP trials to exercise his lungs.   They have weaned his ventilator a little this morning and he has had some desats so we will see if he can continue on these lower settings or need bumped back up. 

Greyson seems to have a new rash on his belly this morning. We do not yet know what has caused this.

His chest x-ray looks the same as yesterday which means his lungs are not getting worse. 

His cultures have not shown any growth to date. 

We are going to go ahead and give a medication to address the concern for his aHUS flaring.  This medicine is different than the infusions I spoke of earlier but is similar and comes with a lower risk of infection.  If in a couple of days he continues to have symptoms of an aHUS flare, they will go ahead and give the short-acting infusion. 💚🧡🎗️