Today has been a busy day.  Greyson has not been stable and has had many ups and downs.   The concern for infection has grown throughout the day.   

There is concern he is in septic shock again.  His BP has been low and they have struggled to bring it up.  He spiked a fever in the daytime but this evening he had a temp of 94.1.   They are warming him up with a machine at his bedside and it seems to be helping. 

They restarted his steroids.  His blood sugar is now high so they will likely be starting an insulin drip.  

He had an incident of desating today.  We had about an hour and a half where we had the whole PICU team and many nurses in here working to stabilize him.  He did not desat too low but during that time his blood pressure was also very low so there was a lot going on.  He is now back on the regular mode on the ventilator. 

They had been putting off doing a CT or MRI because he was not stable enough but this evening they decided they had to do a CT with contrast (previously we did not do contrast because of his kidneys) to look for infection.  They did a CT of his head, abdomen, chest, and pelvis.  We should have results for this tomorrow. 

His abdomen is swollen again.  They are giving lasix which may help. 

His rash looks worse and has now started to peel. They think it may be a chemo rash. 

They had to remove his art line and will be replacing it in the other hand later tonight.   

He has not had an ultrasound yet but hopefully that will happen this evening. 

His white blood cells are not coming in as they hoped so they are concerned he is not engrafting (making his own cells with his new bone marrow). They will be giving him a medication to help him make cells tomorrow as per BMT protocol. 💚🧡🎗️