Day 20 - Pain shmain

Daniel once again wowed his PT today by powering through his therapy session. We removed his arm wedges, and helped him sit up, swing his legs to the floor beside the bed and then just hang out for a good while. As he was sitting he seemed to be slouching like any 20-something slacker - well that's how I was back then (okay not really... no yea I was a sloucher...). Anyway, I asked Daniel to sit up straight and he did it and held his chest out and looked impressive.

Then for kicks we stood up for a short time. This seemed to tire him out, but he did it; never complained and just kept at it. His PT seemed impressed that he wasn't complaining or showing obvious signs of pain (wincing, whining, complaining, pleading, facial grimaces, screaming in dire pain, cussing, inventing new cuss words - you know, we've all been there). I asked the PT how a "typical" burn patient would respond to this effort after having been in a bed for almost three weeks and she said he was doing fantastic! Most people can't do what he just did without a great deal of discomfort. Burns are the worst!

On Daniel's iPad we played our therapy set-list during the time the PT was in the room and when she was leaving we prompted him to say good-bye. His tiny little voice said "bye" so I'm thrilled with his cognitive side showing alertness again too.

Tomorrow's plan for PT/OT is to have him start sitting in a high-backed chair and engage in some kind of activity for 30 minutes and possibly up to one hour. We think this will probably fall along the lines of trying a simple jigsaw puzzle, watching an iPad video or playing the FLOW app on his iPad.

We were expecting a ST to test Daniel's swallowing ability today, but no-show as of 4pm. We want to get him drinking and eating and using his own arms and hands to do that soon, but we need to get him beyond ice chips - one at a time. But it's all coming soon.

Now that he seems to be germ/infection-free from the tests they've verified, Daniel is off any antibiotics. His chest x-ray looked improved today. We think the cystic fibrosis therapy they began yesterday has helped to get him coughing up all the fluid & gunk from his lungs. He continues to cough and hack up stuff intermittently.

While Daniel was in the tub room for wound-care the OT worked his arms and did some nice stretching. They keep the tub room very warm (~90F) for the patient. She stopped by Daniel's room just now to report that his flexibility in his arms is also good. His shoulders were a bit tight and he resisted some of the work when she stretched that area, but the rest of his body was great from her perspective.

Also during wound-care the nurses discussed that his arms appear to be healing so well that they can remove the central line from his leg and tap him on some good veins on his arms - which apparently were easy to see through his fat-free skin. So I'll write it again: Daniel arms are healing really nicely!

Speaking of fat-free... Daniel's weight has come down to something closer to his norm. All that water/fluid weight-gain seems to have come down some. (He weighed 121 pounds today, whereas when he was admitted to the ICU he weighed 113. He topped out at 149!)

His legs look super thin now. No more cankles  for this guy. We do need to get him moving and using his body again. From the physical therapy we did today I can tell he's really weak and tires easily, but he's been a great patient and not fought against what is asked of him - that's what the other patients do, not our trooper ("Starship Trooper") Daniel!