Day 88 - Rough night

Last night was rough for Daniel. We was up from about 1am until 6am. He was making agitated noises and moving about like his back was itching according to his nurse. She stayed with him and helped him get through it. At some point she gave him a PRN of pain relief. Apparently the team decided to ramp down his pain meds by 1/3 starting on Thursday. We were not informed of this. We expressed our extreme disapproval that this had not been conveyed. We're not sure if this was the cause, but the rate that they lowered his meds might have caught up by that point and made him unsettled. It's also possible that it was something else entirely like that he wanted to see a different video or who knows what.

What do you do when you've fallen down and can't get back up? In Daniel's case we're still figuring that out. Dan has been able to walk all over the hospital, go up & down flights of stairs and navigate through crowded chairs and tables with no real issues. But one thing he has difficulty doing is getting up on his own. So if he were to fall down for some reason he might not be able to get back up. Somehow last night he did get up out of bed on his own to use the bathroom. The hospital has bed alarms so of course the nurses were on the scene, but he had already successfully gotten up.

Not what happened, but cute!

Today we worked more on that goal - getting up from the floor. Because he can't really use his arms much due to them being locked at the elbows he has great difficulty getting up. Try it yourself sometime. Sit on the floor on your butt and see if you're able to get up without using your arms. I can do it at my advanced age, but I'm still nimble and awesome. ✊ 

In addition to Daniel's arms being somewhat useless, his torso is really tight. All the skin is a size too small so you can imagine how it would sting and burn like from a rug-burn every time you twist or bend. That makes it pretty hard and painful for Daniel to complete this task of "getting up". He's getting closer though. We broke it down and tried to help him piece together how to do it without assistance. The best motivator seemed to be to set a piece of candy far enough away from him and let him trash around figuring out where to put his feet, angle his body and use whatever he can figure out to use as "crutches" to get to the candy. We had to help push a little here and there, but in the end he's getting close. Tomorrow we will do the same and by that time I think he will have processed how best to accomplish this task. 

When Daniel goes home with us we will have a baby monitor set up in his room so that we can hear if he gets up early or in the night. Like I have said - he can get out of bed and up from a chair, but from the floor he's still working on it. There are not many other adaptations we can think to make for him at home, but if needed we will obtain anything we need to make his life more independent or at least built safety into his lifestyle.

Daniel continues to work on self-feeding. This will probably be a goal that he can't do very well for the next year because of the HO locking his elbows in place. His calorie needs are so high that even if he were able to eat I don't believe he would consume all the calories he needs. Right now we are feeding and doing some assisting, but that means a meal can take an entire hour and that's just for him. He can barely bend his left arms into a shape that allows him to get food in his mouth, but it takes a lot of work on his part. I love seeing him try and work through a task that he should be able to do. Unlike me, he doesn't get overly frustrated with it. He keeps trying and trying - it's inspiring. His desire to work hard, be patient with himself, and the fortitude he brings is amazing.

Before we did wound care and bath we discovered some strange purple "bruises" all over his left arm. We had the nurse look at it to be sure it was okay. She said is happens with burn patients. You'll see all kinds of odd marks and changes in the skin. Nothing to worry about unless the skin opens or shows signs of infection. This was the first time we'd seem something like this so we were concerned. 

The cause of the marks could have been any number of things from the stretching/massage the OT gave earlier to using the CPM device or maybe he did it in his sleep and it just took time for it to show up. Perhaps we will figure it out in time.

This afternoon Daniel showered. We've improved our methods of showering. We found that the harmless stream of water seems to really annoy or hurt or bother him right now. What we assume to be happy tepid soft water might feel like a "fire hose of death" to his new skin. We use wet wash clothes soaked in the gentle soap designed for wound care. Then we held off on rinsing until the end. He was super unhappy with the rinsing. It's hard to put him through it, but necessary for cleaning and wound care. After the shower we pat him dry, put him in a warmed blanket and slather lotion all over which he seems to like a lot more than the rinsing. The soap we use is designed such that you don't have to rinse so we might not even wash it off next time.