12/13 8:20 am

The sun is massaging us through the window. We are trying to help establish days and nights for Ethan. We have this room lit up.  Over the next few days Ethan is going to be weaned off of his narcotics. He has some hard work to do. I have already been cautioned that this is a difficult process to watch and go through. We have to watch closely for signs of withdrawal. It can be anything from vomiting to intense diarrhea, body tremors, fever etc.... great. I am going to take some narcotics if anyone says these signs are “very rare” to see.  That is the kiss of death and almost guarantees Ethan will have all of them. 

This kid is a mover and a shaker. He keeps scooting himself to the foot of the bed so his feet can touch the end of the bed. He then uses that as leverage to boost his butt in the air so he hoist himself off the bed. He just wants to leave. However he is connected to 10 different pumps, a wound vac, chest tube, breathing tube and urinary catheter...so it is not an option.

Ethan’s x-Ray showed a little bit of plural effusion or fluid in his lungs. An adjustment of his medications will likely help. He just isn’t moving and still has some nasty junk in his lungs.

It was a restful night for us both. Only about 2 episodes of delirium in the middle of the night and a big fit during his bath which is usual for him. I can’t blame him. He is so private, he has to be dying a little. Who wouldn’t be.  All your nooks and crannies touched by a stranger. 

Today should be a slow day of progression. Ethan continues to be working his heart without the help of a pacer. He has had no arrhythmias so far. Knock on wood.