Day 49 - Back in the Saddle

Daniel began the day (once we were here) with some sausage, fresh fruit, juice, and GF toast. Partway through breakfast we listened to morning rounds. Daniel's blood pressure dropped over the night so he received a bolus of albumin and fluids to boost it. It's common in burn patients to have low albumin. His heart rate remains high (range of 120-139), but that's been the norm for him for the past several weeks. He's been cleared for all activity so once rounds moved on to the next patient we got Daniel up for a walk. He moved pretty good through the halls so we brought him back to his chair for an extended sit.

As his back has fresh skin stapled to it, there's more pain there and it's good to get him sitting up to take the pressure off the new skin. Daniel seemed content to sit in his chair for over 90 minutes. While he was in his chair his OT tried to coax him into feeding himself and finish off his breakfast. He wasn't interested in using his arms. She also tried to get him to turn his head. We tried to get him to lock onto our faces off to the side so he would turn in our direction to twist and move his neck. He held his neck pretty stiff and straight. We held out food on a fork for him to look at and eat - that got a better result.

Daniel continued sitting until we got him back into bed after a bathroom break. He impressed his charge nurse with the progress he's made. She gave Dan a nice compliment and wished other patients could do/try what he's able to accomplish by sheer desire to comply. He rested while we ordered some lunch. When it arrived we began to eat some, but he seemed to struggle with swallowing this time. He was making big swallow noises (gulp) and coughing some. I'm not quite sure what was going on, but we'll keep trying.
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Recovery Therapy: I am beginning to understand how this next phase of his therapy might begin to detour from how other patients recover. With typical patients a therapist can give instructions and ask the patient to do simple things like "here's your assignment: remember to turn your neck from side to side throughout the day to keep stretching that skin". When the therapist leaves it's up to the patient to remember and follow through. Said patient may choose to do those exercises and that will shorten their stay here and make it easier for them to return to their normal life. If they are smart they will do what's been "prescribed". That much is clear.

For Daniel that burden of following through will be on us. He doesn't understand instructions that are "assigned" to be followed once the therapist has left. He's great at complying to requests when the therapist is in the room.  He tends to outdo what other patients can do - all one has to do is ask because he aims to please. We've been told this time and again by many of his nurses not to think it isn't so. So yes, he impresses his nurses, doctors and therapists. Since he was two years old he's been working with therapists one-on-one. This is one of his strengths. When they ask him to do something he just does it. If it hurts a lot that doesn't seem to hold him back. His desire to comply in therapy is something he's done his whole life. He's gotten very good at it!

When the therapists are not around it's more and more on Dawn and I to get him moving. We know how to get him going, but like any parent/child relationship Daniel knows what he can get away with. It will take some self-control on our part to help us all overcome some of the laziness we've allowed to creep into our lives. We'll need to act more like heartless (👷 kidding) professional therapists and less like soft nurturing parents.

We're good at getting him to do what we require too, but when we see pain expressed in his sad soulful eyes it gets a little harder to be firm. Burns hurt in all kinds of ways - we can't even begin to understand what he's going through!
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Phase one of Daniel's total recovery is now complete. Daniel's skin is all patched! That involved 8 surgeries - 4 to remove the burned skin and 4 to graft.  (there was an extra 9th emergent surgery to grab a guide wire for a central line that had sucked up into his femoral vein closing in on his heart - that was several weeks ago). I could break down phase one, as I'm calling it, and I guess I have done so in all the prior daily posts up to now.

The point is: huge accomplishment - yea Team Daniel, go us! Let's take a moment to rejoice!...
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Okay rejoicing time is now over.

Now phase one is behind us and it's now time to move on.
Phase two (Recovery therapy) begins in earnest now! I have great confidence that it will go as well as phase one.