Day 89 - Reluctance

Dan started out the day seeming normal. But as the morning wore on he seemed a bit "off". He kept closing his eyes slightly, not like he was tired or over medicated; more like he had something else going on inside. We think he might have been over-stimulated and was needing to shut some of the input out so we lowered the light in the room, talking less and left him to relax.

Before this observation we had him doing more of the PT work on a floor mat trying to get up off the floor which he was able to do a bit better. After that we took a walk around and returned to the room. Dawn wanted to get him in the CPM machine so Jamie could see how he was doing it. When we got him all connected on his right arm he seemed uncomfortable. Yesterday he did 2 total hours in the machine and we think that was too much to start him out on. Now he didn't want to go in it so we will have to reintroduce it, maybe with a timer so he can see we will only work him for say 10 minutes for awhile before we ramp it up.
We're still in the evaluation stage with this machine.

His weird mood seems to have worn off after lunch. But he seems less willing to do much today. I think he's having an off day so we've been taking it a little easier. Maybe we pushed him too hard yesterday.

We took a walk this afternoon before his shower. This time he wore his face plate. It didn't seem to bother him, but maybe it had some points of pressure in areas he wouldn't get when laying down. It didn't seem to change his posture to be more upright like we had hoped, but he's tending to be draggy today anyway so that may explain his slumping shoulders.

We've begun to consider and plan out how his days will go starting with his discharge on Tuesday. What seems evident to me is that even with the best laid plans Daniel may have his own needs and desires that will vary from day to day. So while it may be useful to plan out for the perfect day making use of all the therapies we need to do, we need to be flexible and let Daniel heal at his rate not ours.

Another concern we have is to find an appropriate level of pain management that doesn't hinder us. We don't want Dan to be needing pain meds at all if he didn't need them, but we also don't need him to deal with the next year suffering when there are good meds available. I guess this is a dance, but without his input we have to guess our way through this.

• Is he in pain, 
• is he addicted, 
• when is some pain okay to push through?

We've been slowly clearing up his hospital room and taking things home and getting things set up for his return. I'm anxious to get him home, but also uncertain how he will do once there. He may have memories from the accident that we will have to deal with although I believe he doesn't really know what/how it happened. He may think that he doesn't need to do therapy any more now that he is home, but we will have to continue these for a year if not several.

How is the best way to get him into a routine at home?
I believe now that we should start slow and build up until we get to a level of therapy we need. Another approach would be to hit it hard and dive in so he gets it in mind that all this therapy will continue and it won't be easy and this is his 'new normal'. Something we forget sometimes is that Daniel is his own person, he isn't a computer or a robot we can program. We have to lead him because we know where we need to take him in his healing. We can have high expectations, but with this extreme injury and ordeal he's been through there's a lot of healing that needs to happen. The skin is patched up, but there's so much more left before one can say he's healed from this injury.

The healing his body is doing I understand pretty well with the education we've received and extra reading I've done during our tenure (ten year?) at his side. Daniel's psyche has healing to do too and that's something I'm fuzzy on for his needs. That's why I think he may need extra time to adjust to home life and the limitations he will have with his newly grafted body. It will be years before it can be declared that he's "all healed". I don't think he understands that timeline. Maybe that's for the best. We will keep working at it one day at a time. But let's take a few steps back, give him some time to adjust to being at home again, then start out slow and steadily ramp up. Then as Dory would say: