Day 85 - Don't Mean Maybe

Daniel seems to have found his voice and is exerting his will on video choices again. While it's great to see him being him, it means we're watching either Robin Hood or Robin Hood. I will say today he was a bit more flexible than yesterday, but you get the idea here - we're watching a lot of his favorite video Robin Hood. Did I mention that Daniel tends to like a video and will watch it over and over whereas we tend to choose ones we've watched less often. Guess what Daniel likes?

Daniel took his first walk outside today under his own power. He was so cool with it too. No angry moans or even a sign that he didn't want to do it. "Just taking a walk out and about like I'm normal. Hey when can we go home?"

Allemande Left?

He got up, walked around the 8th floor, took an elevator down, walked outside into the sculpture garden, returned to the 8th floor and we did a few chores in the gym/kitchen. He was less enthusiastic with the chores - putting dishes up HIGH in a cupboard, but we was really awesome in attitude. A few problems with balance, but otherwise pretty solid.

Riding the 'vator like it ain't no thang.

We took to the stairs and went up a full flight and back down and returned to his room for some nice neck stretching.

Stair Climber Plus

The mama supplied the neck stretching that the Daniel really enjoyed today. He was almost in an asleep state for the entire session and the mama does a good job of neck massage!

Somnambulance

Daniel showed what he is made of today. Dawn was doing some stretching of his shoulders and we measured the angle of his stretch. He was getting stretches that exceed anything OTs have been able to achieve while he is under sedation during surgery. We believe we are on the right track with applying lots of lotion, working the scar bands and having him stretch his arms every day in his gunslinger and nights in his wedges. During this OT session we got a knock on the door. It was the Orthopedic Solutions vendor Kyle with his new JSS splints. They will be used to try tweaking his elbows to give an increase in range. He will work up to the point where he wears these for 30 minute stints up to three times per day. For today and the next week Daniel will wear them for 30 minutes.

Jazz Hands!

I took a short break today and walked over to the Fulginiti Pavilion art gallery on campus to see a free exhibit. I was blown away by the MasterWorks collection. Here's a Monet sample. Who would have thought there would be Renoir, Matisse, Picasso, Chagall, Monet and other great works on campus!

Later in the afternoon as ST L. was leaving, volunteers with a tea cart (apparently 2:45 tea is a special event-thing here) came around with fancy teas, cookies and a mousse. The ST indicated that this was something not to pass up, so I took one for the team and had a bunch of yumminess. No gluten free options, so I made sure to eat an extra cookie on Daniel's behalf too.

We're still wondering and waiting for the MOAB to occur now that we are on day 5 since our last one. There was a minor deposit made this morning, but not enough by our standards. Maybe Daniel miraculously sneaked out of bed last night and covered his tracks fastidiously or the nurse didn't record it last night. Both are unlikely possibilities. His day nurse is stumped as am I.

Tonight we'll have chicken breast, beans and a salad. Daniel seems calm and relaxed right now.

Day 84 - Meh!

Captain's Log: Day 84 Still at Sea - Not much to report today. The crew is weary, our stocks are running low, the larder infested with rats. From the crow's nest a report of red sky at dawn. The first mate overheard the crew muttering...

First mate Daniel did okay with therapy. He seems a bit less happy than his happiest, a bit of complaining all day; more as the day wore on I'd say. I think this stems from a lack of the return of the MOAB, this being day 4. Those opioids again clogging up the works!

A short while after lunch Daniel hurled. We think it's the minute dose of Milk of Magnesia that we tried to have him drink. He swallowed a very small amount and refused the rest. About 25 minutes later all that came up and out! (This is the only time he's been sick here and we think it was the MOM to blame).

He did pretty good with his shower today. Maybe we are getting better at giving them. Today we made the executive decision to not use the Hibiclens as it dries his skin terribly. We obtained foaming soap that they use in the tub room named Remedy - it is not quite as nasty (no alcohol, fewer caustic chemicals). It may not clean as well, but he doesn't have but a few open wounds still so we skipped the Hibiclens all together. After his shower we soaked him in lotion. It didn't seem to matter, he started itching and scratching like crazy again. Takeaway: I think we need to time his shower so that his anti-itch Atarax medication has more time to fully kick in.

We discussed the use of a CPM device for a two-week trial to see if it can help increase his range of motion in his shoulder. It was Jamie that came up with this therapeutic idea as was the Jazz splints for his elbows. We should have the continuous passive motion device on Thursday. The Jazz splints (they force the elbow to bend and extend range) will be arriving soon too.

We asked the team leader Dr. Payne (I know, right?) to work out and prioritize amongst themselves what things are most important each day for when Daniel is discharged. We try every day to do all the therapies for the recommended hours, but I also realize that some days will be harder than others and we need to know what is most important if we just run out of time. I think we do a better job than most patients since we force our own will on Daniel and he does his best to comply.

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.

Day 82 - Easter Sunday is a day to relax

Daniel began the day happy again. We stuffed some breakfast down him before his PT K. came by. We did some walking around the building. It was a pretty long walk all around the 8th floor of both Pavilions. Daniel returned and sat down for a short break. I lotioned up his legs, then we got him ready to take another walk to the gym.


After the walk Daniel laid on the bed and fell into a deep sleep while being stretched. He was so relaxed that this was his best stretching session. He was mushy and completely relaxed allowing for some great long stretches.

Neck stretching

Cute snoring noises

Elbow stretches

For the rest of the day Daniel was pretty tired out. He also was not in much of a mood to celebrate Easter with his grandparents or eat or do much of anything. The long walks, workout in the gym and the stretching tuckered him out.

Day 81 - Happy start

Today we arrived to find Daniel in bed lounging. An attempt was made to get breakfast going with his nurse before we arrived, but Daniel was having none of it. Once we were gowned up we helped him up and out of bed. He made some happy noises and he was smiling and "wagging his tail"! If you know Daniel and you've seen him happy you can picture what I mean. This we have not seen since before the accident. It was so unexpected and wonderful to see and hear Daniel being HAPPY!!

The Mama feeds the dude

After PT K. worked with him he was making happy noises again. Today is a good day. Well at least up to mid-morning. We'll see if this happy trend continues.

This lotion is REALLY awesome for Daniel's skin. He dries out so quickly. Putting this on really helps. It melts when you put it on; like basting a turkey. In some sense maybe that's not far off. 🍗

Here's an action shot of Daniel bouncing on his big red ball. He must be feeling pretty good to be able to move his body like this - more wiggling and bouncing. It takes balance and core strength too. Good job Dan!

==+
News flash:
Daniel has a discharge date! At least it's in the system and that date is: April 25th - about a week and a half from now. We think he will actually be ready to come home on that date, but will we be ready?

Well I'm definitely done with being here and coming here every single day for the past 80 days. Dawn and I know the routine with wound care, we know how to wash him, feed him, and we've had plenty of experience with medication management. We might need to make a few minor changes in our home, but we think he will be happy to leave and head home. I'm sure there's a surprise or two left for us, but we're happy because we can see the end of Daniel's hospital stay is in sight.

His recovery is long from complete. He's got a year or more of pain just from burn sites, his elbows are somewhat locked in place, he will itch all over for months and months, and there could be surgeries down the line to help loosen the grip on his shoulders and get his elbows to unlock. Burns are horrible. Don't try this at home!
==+
It's a stretch, but when motivated with a good snack he CAN get food up to his mouth - just barely.

Day 80 - Day 2 in Rehabilitation

Daniel had to rush through breakfast, but was quite relaxed and calm during all the morning therapy. First he had speech therapy, followed shortly by OT, then PT each lasting around an hour. They did some work with Daniel, but also took notes and asked a lot of questions on how best to interact with Daniel. It's good to see them taking an interest in our son.

Doing some arm stretching with OT L.

He's got the afternoon off from therapist activities and has been visiting with his grandparents. His mom is feeding him candy and a brownie to boost his calorie intake.

Just because he isn't doing 1:1 therapy does not mean he's just laying around although there's some rest time between therapies. He wears his faceplate at night, the gunslinger on both arms for about an hour each side, there's meals he needs to eat - some of it using his left arm, and wound care. We try to put lotion on him several times per day as well as his skin dries out quickly.

One of the new activities he did today was lay with his head off the bed. Then a PT stretched his neck while supporting his head. While that was going on I smoothed his neck, throat and cheeks. He seemed to really enjoy this position.

The scar bands are forming on his arms, body and around his mouth. For his mouth the bands are pulling down on his lower lip and that will make it harder for him to close his mouth. To counteract that we use the MPA, the mouth splints and then massage the skin and "pull" gently again the tug of the scar bands. Over time these actions will break the hold that the scar bands have on his skin and allow him to have more normal function.

Bombs away! Today Daniel had his own ordinance to unload. The use of pain meds (opiates) can take their toll on the regularity of said payload deliveries. We've added fiber and other small munitions to his diet through this period. After some additional prepping the cargo was unleashed successfully. The depiction below roughly matches today's bomb as it had been several days since our last mission. No civilians were harmed during the delivery.

Don't try this at home!

Day 79 - Okay we really did move this time

We made it! We're off the burn floor and onto the rehab unit on the 8th floor. We were actually discharged from the burn floor and immediately readmitted to rehabilitation. The way it works here at UC Health is that the rehab unit is a hospital inside a hospital. They have their own schedule, do things a little differently and operate apart from the acute centers like burn, transplant, and cardiac.

Packed up

Mama and Dan getting a little snuggle time in

Goodbye burn room

In transit

One of the things that is different in rehabilitation is how meals are arranged. Each patient meal defaults to the chef's choice for all meals. The meals are delivered within a narrow timeframe. All the structure makes it so each patient can get all the therapy in with the specialists. Dan likes structure so this kind of routine should be okay with him. We can pre-order his meals the night before so we can control the food he gets if we wish or let it default to whatever they bring. We can order extra food during the day too if we wish. We will figure out the rest of what is happening as the day passes.

His first work was with OTs who wanted to see him walk. When they arrived they asked that his movie be turned off. He had just calmed down from the transition so he was upset to begin with. He refused to stand and walk around until we got him some candy, but he still did not want to walk around for them. He did stand and walked directly to the TV and attempted to turn on the TV to start his movie so we gave in and turned it on so he could relax some. It was also around this time that he got some scheduled pain meds to help with the session.

We shifted to working with his arms - stretching and measuring. We got him in his bed which he agreed to once the movie was running. He was doing better with this activity, but still making noises that told us he wasn't happy. The stretching and measuring continued, he protested, they did more. he protested. I suspect this is how all the days will go. I just hope the routine and structure will be something that helps him to cope.

Jamie will be Daniel's first visitor in his new rehab room tonight if all goes as planned.