Checking In

It's been several weeks since I posted.
I'll answer some of the common questions I've been hearing and update as to where we are at.

Dan's big giant blister is healing up and looks better every day. He got another smaller one this week, but it is closer in size to a silver dollar. It happened the night before we were to go to wound care (again) and they felt it was better to let it heal without slicing his skin and removing it. The burn care staff remarked that we may see more of them before he's all healed and that it is likely to occur on his legs where the donor sites were for his skin grafts. (Could that mean we see these things for a year or more?)

In many ways Daniel is acting more like the Daniel we knew before all this happened. He sometimes smiles in the morning, we hear giggles now and then and he seems just happier all around. When that happens it feels so good and makes this journey all worthwhile. It's like, "yea that's what we have been waiting for" - happy Dan is a really nice thing even if it's fleeting.

He also has pained/grumpy moments too. Sometimes he gets really upset and we just can't figure out what he needs/wants. That's really frustrating for all of us. When it's like this we can't tell if he's in pain, or if he needs something trivial like just a new video to watch. That "sucks" - sorry there's no better way to describe it! I really hate moments like this because for the first time in MANY MANY years I really have no idea what to do to help him. It's times like this when I wish I had a magic pill to make it all go away. Sometimes what seems best is to give him space and let him work through whatever is going on; then regroup and maybe he can communicate something to us that we can do to mitigate his distress. (This happened today - I thought he was in pain from wearing the elbow splints, but hesitated to give him some meds and just waited it out. It turned out he just needed to watch a video - as that settled him down). grrr

Dan seems to be doing really well with the visits to the clinics, rehab doctors, wound care checkups and all the other doctor exam room visits we've taken him through. The traffic around Denver is getting worse all the time. He doesn't like sitting in traffic. That seems to make him irritable more than the doctor visits. We think he understands that all the people we see in exam rooms are there to help him and he can wait through their boring talks with mom and dad. When it starts to go wrong we whip out the candy...

Here's some questions I've been asked lately:
What are his long-term prospects? He will probably have limited movement in his elbows for up to 18 months. Maybe sooner like 6 months before we could do anything, but the longer timeframe is more likely. This is due to the heterotrophic ossification (calcium deposits) in his elbow joints. It's super painful, that much I can tell. Our rehab doctor (Dr. Payne - not kidding) is reaching out to doctors who know more about this specific malady that some burn patients experience. We'd like to find someone who has a successful track record with surgeries to release the elbows, but that could mean a long 18 months before Dan gets the use of his arms back.

Shoulders - this area also needs attention for more in to the 18 month timeframe when one's body begins to settle down from this horrific injury. Many burn survivors opt for a contracture-release surgery where they basically slice your armpits open with a zig-zag cut that allows the skin to stretch more. I'm simplifying this procedure, but once the skin begins to not tighten up so much this
operation is done to allow greater range of motion. Until then it's button-up shirts (not pullover) and a lot of assistance with dressing, self-care and challenges with anything involving the use of the arms - so basically everything in life! Until then we stretch Daniel and work his scar bands to help his skin to heal and not be so tight. If we didn't do all this stretching his arms would pull in and he'd be curled up in a tight ball. Yup - that kinda sucks too. Aren't burn injuries fun? grrr

Based on other burn patients I've seen, Daniel may appear remarkably all healed (on the outside) in a couple of years. The skin will heal, smooth out and look really normal eventually as long as we stick to all the therapy, compression garments, and keep him healthy. Until then each and EVERY day we have to commit to doing all that we do for him. It's a grind and Dawn is way better and sticking to it than I am. I'm better and doing errands and getting out of the house for a bit to tackle all the other things we need to keep the house running.

How are we holding up? Eh - not bad I guess. I've gone back to work a little bit to finish up the school year and turn things over to someone else in the fall. I can't pretend to continue working thinking things are all hunky-dory. I'll take some time away from work commitments and see where/what I might want to be when I grow up later this year or sometime in the future.

Dawn seems to be handling this really well. She super! Her professor gig allows her the ability to be here for Daniel and I can cover things when she's lecturing, but that won't start back up until August.

We're slowly beginning to bring back service providers into our world. That will help for us to get away here and there and get Daniel on track to do more things independent from us. Our long-term goal of moving him to the carriage house in back of our house is on hold, but bits and pieces are coming together just not on track with what he had envisioned before the burn. This is an ever-evolving grand puzzle we have for Daniel and his future. Some pieces start to fit, then a few setbacks, we regroup and find other puzzle pieces that seem to fit around the edges that we hadn't see before. The whole puzzle may never be complete, but we do make progress even if it seems murky at times.