Paralyzed & Sedated

The bag on the left is of his trach tube. The photos show the closure and where they opened things up a bit with the ring. You can't see any of that from this photo, but at that point, we were all pretty happy because the doctor said Ammon was doing "great!"

He doesn't look so great here. They have him so deeply sedated now that he is actually in a paralyzed state. He can open his eyes (and even cry a few tears), but last night he looked pretty rough. This morning he was peaceful and completely out of it. He will be intubated for three days. At that point, they will begin to wean him off the ventilator to see if the swelling is down. When they think it's pretty safe, he will go back to surgery so they can put a camera down there and look at things before they extubate him. Hopefully if all goes according to plan, he might be able to come home within a couple of days after that. I was planning to stay with him until Sunday night, but there is no place to sleep so I came home with Jim today after spending the morning with Ammon. I don't know that he even knows we were there. The nurses encouraged us to go home but we have to stay close to the phone and we need to check in often with them. I will go back up tomorrow and spend the day with him and do the same thing on Sunday. By then we should know more about how he's doing and what the timetable will be. I think any visit right now would be pointless. Give him about three or four more days.

Camilla was in SLC and when she realized that Gillian was at the hospital, she came up. They both had a tough time when they saw Ammon.

I had a long discussion with the ICU doctor this morning about DNR options. That means "Do Not Rescessitate". We will have things in order by the time we leave the hospital this time. I was very impressed by her and her willingness to listen to our concerns and wishes. We did not sign a DNR because we would like them to always try a reasonable process until it is deemed pointless, but we do want the option to decide when enough is enough. She agreed. We will meet with a group of people that help families face these kinds of decisions sometime between now and when Ammon leaves and will come home with a signed form not allowing ER personnel to try to intubate him from our home. They wouldn't be able to do it. Hopefully we will never have to face these kinds of decisions but every family needs to discuss it and talk about it.

The past several months have left us feeling helpless and powerless. This is our child and we know him better than anyone. We feel we should have the power to make decisions (with his consent and best understanding he can have) that will best serve his interests. It took an experience like this past one (ventilator dictated) to wake us up and help us realize that we need to have plans for any kind of situation. We have tended to think, "He's still young - we will worry about that later." We now know that we have to make decisions right now. Today I made sure we had plenty of wiggle room in those options to allow doctors to do what they can to preserve a life - but we want to make sure there is quality to that life and heroics isn't what we're looking for. Competency, caring and understanding is what we need from doctors. They are not "Gods" and we don't expect nor want them to act like it.

Am I second guessing what we've done? Yes. We know there are risks. However, even the doctor today said "You needed to try to add to that quality - you made the right decision." If he has to go back on a trach, then so be it - at least it will be our decision and we will know we have done our very best to offer some improved quality to this brave son's life. You've got to try some things in life even if they are hard. This is one of those things.