Day 32 - Hurts us too

Today Daniel started early with his OT who stretched all his arms joints and eventually got his ass sitting in a chair. Daniel was expressing a lot of pain during all the movement of his arms. The OT described what other patients at this point are feeling and that the pain is mostly coming from the tightness of the skin. The new skin grafts on his arms will tighten and feel very painful - like a rug burn. But not like any rug burn you or I have experienced unless the rug was on fire and dipped in acid! Daniel's nurse gave him some extra pain meds to help work through the therapy session.

Before we started the stretching session Daniel was alert and bright-eyed. He was his cheerful self and I feel like he was happy to see us again. He was making great eye contact and tracking me around the room. I felt privileged. I tried my best to give him my friendly face and be expressive and understanding to be as supportive as I could. I've mentioned this many times, but we don't think he will remember any of this and that's a relief, but in the moment it's rough on all of us to see him expressing pain. But it's weird because in the moment he knows what's going on and can respond to requests and even say "hi" when you say hi to him.

Today was about the toughest session so far for Daniel during OT. Even with pain meds added as a PRN for the session, on top his daily allotment, Daniel was in a lot of pain. It's strange to see and understand how painful it is for burn patients when they begin moving again - just simple movements. All he's doing is bending his arm up to his mouth - seems simple enough right?

Dan is not on solid food yet, but we're practicing the motions. The OT handed Dan a small brush (used normally for cleaning his mouth and gums) that was soaked with a slight minty flavor as a reward and to give purpose to the activity. So he's working to try to bend his arm to his mouth - a simple task for some, but EXTREMELY painful for someone with new grafts on their arms. Daniel will stretch out his tongue to meet where his hand is holding the brush to shorten the distance his arm has to travel. It's cute if you didn't know he was in such PAIN.

This is just the beginning of stretching and recovery for Daniel. It's likely to be painful for over ONE YEAR until the scar tissue yields with use and continued stretching. The pain will be less and less over time of course, but still... Somewhere between twelve and 18 months the scar tissue starts to hurt less. He's got a long road ahead.

Once the arm-stretching activity was complete we got Daniel up to sit in his chair for an hour if he could make it. You could still see his pained expression, but we got him in the chair then did a number of activities to help take his mind off the pain and the time spent sitting up. At one point the nurse popped back in and gave Daniel an extra boost of pain relief, but even with the strong meds it didn't seem to cut through the pain

enough to cease his moaning and pleading eyes. Like I said - it hurts just to watch.

With every ounce of energy Daniel was trying to tell us he didn't want to remain sitting and experiencing the pain he felt. "It's much better in the bed people!" More pleading eyes. By this time Daniel's grandparents had arrived and were quickly tasked with helping to distract Daniel from the pain. We all worked on a jigsaw puzzle - that had Daniel bending his arms even more and it's amazing how his dexterity is coming back. Mom is holding puzzle pieces out far away making him reach up and away to get the piece then he quickly and pretty accurately fits in into position. I'm sure the bending arms was hurting, but he wanted to finish the puzzle because that might mean he could go back to the bed... Nope. We wanted to get him up for at least one hour so next the family sang songs and tried to comfort and reason with him offering empathy and understanding... pleading eyes. When we got to within 5 minutes I set up a timer on his iPad so he could visually see how much longer he had. Daniel was already leaning forward ready to launch over to the bed, but had to wait for everyone's help. pleading eyes. He was giving us every queue he could think of to make us understand how uncomfortable he was. The timer helped him to get through the final few minutes.