Day 83 - UnManic Monday, then again...

Daniel got up this morning and was observed by OT L. while eating breakfast. Dawn was assisting and OT gave some input mostly supporting the ideas and modified utensils Dan was using. She did bring a rocker knife to see how Daniel could do with cutting, but with soft food like waffles Daniel used the side of his fork and got 'er done.

After breakfast Daniel brushed his teeth (with some assistance). Daniel got a it of shoulder massage by Dawn guided by OT.

Daniel was given additional meds for his PT session. THey began with a long walk. They entered the gym, but it was crowded and didn't seem like a good place for Daniel - too much anxiety. They then took to the stairway and went up an entire flight of stairs and back down. He was a little unsteady on the stairs, but his walking around the entire 8th floor (pavilion 1 & 2) looked good to PT. She noticed an improvement since last week or so in his walking ability and improved balance. They finished up the session in Dan's bed - he fell asleep when being massaged and stretched.

A quick snack was consumed to finish off 2 slices of bacon that wasn't delivered with his morning breakfast.
Lunch - bean burrito, potato chips and a breeze boost or two. While finishing lunch the dad-unit massaged his feet and legs while he wore his gunslinger. The "tubeflex" (skin-tight elastic) that helps his skin heal had rolled down and was leaving a dark red mark across his thigh. He probably rolled it down at night and it bunched up. It can bruise his leg and leave a dark red mark that then itches and causes pain.

Right at about 2pm today Daniel began to get agitated. Like really really ungood agitated. If he could talk I think he would have said "My skin is on fire, itches everywhere, and has needles going into it from every angle" - kind of uncomfortable agitated. We had not seen this level of upsetness here at the hospital.

It was time for a few of his medications so I contacted the nurse to get hoppin' on that. It was about this time that his ST L. arrived to look over his face and neck and do some massage. Meanwhile I held his hands, massaged his legs, arms and anywhere else he seemed to feel the itch intensely. At any rate Daniel did begin to calm down. It took too long from my perspective (and his too), but he's much better looking and feeling now. The ST was very calm and cool through all this - she was seeing Daniel at his worst moments.

The ST did get a chance to see Daniel wearing his face mask and agreed that it looked like the fit was not achieving all the compression on his neck and upper cheeks that we were hoping to achieve. There's been some talk about getting fitted for a different mask that might fit his face in ways this one doesn't. We'll see what happens with that. It will help to heal his face, smooth the skin and help with scar bands.

If his discharge date is in eight days from today we need to learn how life will begin to revolve around Daniel in our home. Dan may receive in-home rehab, then eventually have out-patient rehab. There may also be out-patient wound care that will be a part of our lives. We will be visiting this hospital for quite some time even after we are discharged. Timing for all of these possibilities is yet to be determined.

Until discharge we need to learn as much as we can from the various therapists. Both Dawn and I have soaked up a lot of what they do. We've advised them A LOT on how to interface with Daniel. In almost all ways we know more about therapy for Daniel than any of the caregivers. So I guess there's not a lot more to learn for us.

What we're doing with him here in the hospital will be made a bit tougher when we are at home because now we'll be making all the meals. We'll be shopping again - for the past 80+ days we've been spending most of our waking hours here at the hospital. We'll be giving all meds, feeding, washing, assisting, doing massage and ensuring he's wearing all his therapy devices. I'll be glad to end the commute, but there will be much more time spent in care-giving for Daniel without the team support we've had here. Figuring out how to help Daniel live in our home again with his limited arm ability will be a challenge, but we're up for it. Getting some in-home care/rehabilitation folks on-board will help make that transition simpler. It's been a long run up to discharge and we're not there yet. We're looking forward to the next phase - however that plays out.