Greyson had a busy day today.  He woke up a lot and moved around.  This is scary because he instantly goes for his tubes and it is dangerous if they get pulled out!  It is also scary because he was waking up enough to be uncomfortable with his intubation.  We had to help restrain him many times today while waiting for a sedation bolus to take effect.  During the times he was awake, we were able to talk with him and he was able to recognize that we were there and occasionally communicate back a little.  Because of all of his wake-ups, he is now on a ketamine drip which is helping him stay much more comfortable. 

He had a CT scan this morning that showed fluid in his right lung.  The doctors are unsure if the fluid is the infection or fluid buildup because he is retaining fluid.  They have started him on lasix and that will help the doctors see which it is so they can best treat it.  

His kidneys are not doing well and are injured from all of this.  They have stopped giving him fluids and TPN in hopes of allowing his kidneys to rest and recover.  We have signed consent forms for dialysis and this may be in the near future. 

They did another ultrasound of his heart to check for fluid buildup and thankfully there was no fluid around his heart. 

He has gotten platelets tonight which he is expected to regularly need after his bone marrow transplant. 

He has an awful looking rash.  It started on his legs and has spread to his back and arms.  They are not quite sure what the rash is but dermatology has taken a look at it and they are not concerned about it as of yet. 

He has not had a fever today but he has been too cold at times.   Being too cold could be a sign of infection so we don’t know if it’s a good thing or not that he has not had fevers.  

Thank you all for your prayers. 💚🧡🎗️