I am so tired but my mind wont shut down so I thought I would just jot down a few words on how little Scotty is doing. He is extremely confused and has a constant look of bewilderment on his face, he has also become very frightened whenever someone comes near him. We can no longer even take his temp via his mouth as it is too distressing for him. He has a fever tonight and I tried to give him Tylenol but he went rigid and his mouth tightened, the doc said not to worry for now, if it goes any higher we will have to force it somehow. We have just given him his blood thinner shot to the stomach which means holding him down and just trying to comfort him the best we can.
He can walk a few steps and shows no signs of paralysis. He has spoken today but not really anything that made any sense, however he wasnt slurring, its like he will start to say something and then forget what he was going to say. He got very upset earlier and it was heartbreaking to watch, for a couple of minutes he was shouting for help, he kept yelling "somebody help me, I need help", I was there and so was his nurse and we were holding him and telling him he was safe but he didnt seem to know we were there.
All I can do is just snuggle up next to him and let his cheek rest in the palm of my hand. He will also rest his head on mine and I know he is getting comfort from it.
This is just pure hell.
I would like to say thank you to Susan for being such a good friend and for always being there for us, I know she was upset to see Scott this afternoon in such a sad state but I know she will stick by us no matter how bad things get. Also thank you to Tina who is a Chaplain here and who I spend many hours talking to. Today she sat beside Scott and played her harp for a long time, such beauty amid the horror of what was happening. And thanks to our angel Laura for the thoughtful phone call, it was much appreciated.
Hoping for a brighter tomorrow.