Today has been another rough day, though I do feel like we had a few moments where Greyson acted like Greyson.  He has been in a lot of pain, though the morphine pump seems to be helping a little, he has been started on o2 because he is desating when he sleeps, his feeds have been reduced because his stomach is not tolerating them very well, and he has been started on Lasix.   He has spiked several fevers today, and they have all come before he was able to get Tylenol to break them (due to having gotten it too recently for the previous fever).   

He started really losing his hair today so we had a friend bring us some clippers and I was able to give him a new haircut so the hairs won’t bother him so much.  He received platelets last night and will again tonight.   He will also start TPN (iv nutrition) to make up for the feeds he is unable to get. 💚🧡🎗️