Update: 8:15 pm 11/24

 I am feeling better. This afternoon has been mostly good. There have been a couple times Ethan has tried to swing his legs over the side of the bed or prop himself up.  Keep in mind his chest has an incision in it, through his sternum with nothing but a thin piece of transparent sterile dressing. It’s about 9 inches long and 3 inches wide. He has 3 chest tubes draining and the ECMO tubes coming and going along with the multiple  IV’s, breathing tube etc. 

If he tries to get up he is going to do some real potential damage. He wants to communicate but is frustrated that he can’t. He can’t even make a sound but is trying to scream.

The nurses needed to remove the urinary catheter so that it could avoid causing an infection.  As you could imagine, Ethan is modest and private.  Keep in mind he is mostly non responsive. Occasionally I get a glimpse of semi coherence. The nurses removed the catheter And he was immediately very upset and rightfully so.  They had to rush to get extra sedation because he was punching the bed and very mad. He was becoming combative he gave everyone the middle finger and he was bound and determined he was walking out of here.

He has been quiet since that episode. He wants his phone, but despite his multiple attempts, none of the passwords I have tried have worked and if the next passcode isn’t correct his phone will erase itself. So for now, it “isn’t charged”.

Ethan has continued to improve throughout the day. He had another echo. They are trying to determine if the new heart is still “tired” or if it is safe to start weaning him off the bypass machine. I have not gotten results of that. He is producing urine excellently which means his kidneys are doing good. I gave him a brief wipe down to keep him clean.

No more clots have developed that they are aware of ox is great. He has been “sleeping” now for about 2 hours. He needs that.

His fluids and medications are decreasing. So he only has 9 pumps running. Which is less than yesterday. His blood pressure has been stable. That is great news.

All in all, despite my meltdown earlier today, which was needed. It has been a good day. But they will not wake him up like that ever again without any pain management. Apparently that is standard.