Day 90 - Final Full Day

Today brought all the current players of Team Daniel to our room. Everyone had good things to say about his progress and our ability to help with his home therapies. There are a few loose ends that may not be straightened out with coverage, insurance and other things - Nothing that will stop us from heading home tomorrow. With a stay as long as ours there's bound to be loose ends to work out. Sure it would be nice if every little detail was ironed out, but this is the way things work with so many parties involved.

There is a lingering concern with Daniel's liver panels. We have been referred to a liver specialist and we will meet with them in a month or so. The tests ruled out obvious things like hepatitis. We don't know a lot more that I will detail here. The most likely cause is a reaction to the burn injury so we will let time heal his liver. 

So the plan is to finish up today with some of the usual therapies we've been doing, eat some dinner, and head to bed to get a good night's sleep. Tomorrow we may be home by mid afternoon.

==+

I have not decided if I will continue posting to this blog after today. For me this daily effort provided a way to document what was happening. It allowed you an opportunity to keep up on Daniel's journey with whatever frequency you chose. 

Tomorrow marks a big milestone in Daniel's road to recovery. Once he is home the remainder of his recovery is only beginning. Every day will bring challenges. I expect while each day will be a little different, the days will also look similar so why post that? Future posts, if I write anymore, may describe when new or big things happen. 

Writing daily allowed me to process some of what is happening during this tragic event and Daniel's continued healing. It was therapeutic to write about it to a point. Much of what I've had to process as Daniel's father is beyond description. I've shared a lot here with you readers, but much of it is deep within and may find its way out by other means. 

We've received cards, letters, meals, more meals, cash, prayers, phone calls, emails, comments, visits, dinners out with colleagues... so much concern and support. All this love and care have been helpful beyond description. I am at a loss for words (surprised?) so I'll end this post with a simple thank you.

Day 89 - Reluctance

Dan started out the day seeming normal. But as the morning wore on he seemed a bit "off". He kept closing his eyes slightly, not like he was tired or over medicated; more like he had something else going on inside. We think he might have been over-stimulated and was needing to shut some of the input out so we lowered the light in the room, talking less and left him to relax.

Before this observation we had him doing more of the PT work on a floor mat trying to get up off the floor which he was able to do a bit better. After that we took a walk around and returned to the room. Dawn wanted to get him in the CPM machine so Jamie could see how he was doing it. When we got him all connected on his right arm he seemed uncomfortable. Yesterday he did 2 total hours in the machine and we think that was too much to start him out on. Now he didn't want to go in it so we will have to reintroduce it, maybe with a timer so he can see we will only work him for say 10 minutes for awhile before we ramp it up.
We're still in the evaluation stage with this machine.

His weird mood seems to have worn off after lunch. But he seems less willing to do much today. I think he's having an off day so we've been taking it a little easier. Maybe we pushed him too hard yesterday.

We took a walk this afternoon before his shower. This time he wore his face plate. It didn't seem to bother him, but maybe it had some points of pressure in areas he wouldn't get when laying down. It didn't seem to change his posture to be more upright like we had hoped, but he's tending to be draggy today anyway so that may explain his slumping shoulders.

We've begun to consider and plan out how his days will go starting with his discharge on Tuesday. What seems evident to me is that even with the best laid plans Daniel may have his own needs and desires that will vary from day to day. So while it may be useful to plan out for the perfect day making use of all the therapies we need to do, we need to be flexible and let Daniel heal at his rate not ours.

Another concern we have is to find an appropriate level of pain management that doesn't hinder us. We don't want Dan to be needing pain meds at all if he didn't need them, but we also don't need him to deal with the next year suffering when there are good meds available. I guess this is a dance, but without his input we have to guess our way through this.

• Is he in pain, 
• is he addicted, 
• when is some pain okay to push through?

We've been slowly clearing up his hospital room and taking things home and getting things set up for his return. I'm anxious to get him home, but also uncertain how he will do once there. He may have memories from the accident that we will have to deal with although I believe he doesn't really know what/how it happened. He may think that he doesn't need to do therapy any more now that he is home, but we will have to continue these for a year if not several.

How is the best way to get him into a routine at home?
I believe now that we should start slow and build up until we get to a level of therapy we need. Another approach would be to hit it hard and dive in so he gets it in mind that all this therapy will continue and it won't be easy and this is his 'new normal'. Something we forget sometimes is that Daniel is his own person, he isn't a computer or a robot we can program. We have to lead him because we know where we need to take him in his healing. We can have high expectations, but with this extreme injury and ordeal he's been through there's a lot of healing that needs to happen. The skin is patched up, but there's so much more left before one can say he's healed from this injury.

The healing his body is doing I understand pretty well with the education we've received and extra reading I've done during our tenure (ten year?) at his side. Daniel's psyche has healing to do too and that's something I'm fuzzy on for his needs. That's why I think he may need extra time to adjust to home life and the limitations he will have with his newly grafted body. It will be years before it can be declared that he's "all healed". I don't think he understands that timeline. Maybe that's for the best. We will keep working at it one day at a time. But let's take a few steps back, give him some time to adjust to being at home again, then start out slow and steadily ramp up. Then as Dory would say:

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.

Day 87 - Visits up a storm

Today Daniel was holding court for all his visitors. There were grandparents, attending doctors, his burn surgery team and the CPM vendors. Daniel was really mellow with the slew of people coming and going in his room.

Showing off his pecs while he test drives the CPM machine.

The CPM machine slowly moves his arms in various fixed directions that we can set up. It's a big, bulky beast. We're evaluating it and may decide to take it home for use in therapy. We'll have to see how that all plays out; there's insurance that might cover it and we have to see if he tolerates it well too.

I stopped in on the burn floor and mentioned that Daniel would be heading home next Tuesday. I found them in the staff lunch room where I barged in to tell them and they applauded when I told them of his discharge date. They all wanted to come and see how he was doing and came up today to the rehab floor - it was nice for them to get a good look at him at this stage in his recovery.

The grandparents arrived before all the other visitors; saw the whole ordeal of getting the CPM device set up and visited with Daniel.

Earlier in the day his attending physician took a good look at Daniel's bloody graft on his elbow. It's the last hold-out of his grafts that is taking longer to seal up. The doctor felt the graft looks like it is healing properly and will seal in time. They felt we were covering his wound properly and taking appropriate care of it so we're happy to have confirmation that we are doing things properly.

With some of the workouts and therapies we put Daniel through today I suspect this is the sentiment he has towards us... and it's only Day 87!

Day 86 - Heads Together

Same drill today. Feed some breakfast, get him dressed, slap some lotion on, start therapy. First was ST, then OT/PT. The team met with us to review all the therapies we have (there's a lot) and take notes to share with us in preparation for discharge still on the 25th. We have so many tasks we could be doing with Daniel, we wanted a prioritization of things at least for now so that we can try to fit everything in, but make sure we do the most important things when time is limited.

Here's a quick list of daily tasks: (it's more for me to see the whole list all together than to try and explain each one as I've done that over the course of this blog already)

• Feed 
• Dress 
• Shower 
• Bathroom breaks
• Exercise - short walks
• CPM device
• SCOI
• MPA
• JSS Splints
• Lotion Lotion Lotion
• Arm stretching and range of motion (Probably the most important therapy right now)
• Face mask
• Wound care
• Dressings

We're thinking of ways to use the therapy team with the remaining days here. We've tasked them with finding more difficult stairs to climb and create challenges that will help Daniel maneuver through our home - things he can do here that will be similar to life in our old house. Other destinations include visiting the outpatient therapy area in the AOP 4th floor, visiting the cafeteria where there are lots of tables making the route narrow and difficult to traverse, finding dark stairs or narrow ones like in our home. One place we think it's best not to visit right now it the burn center. That's because we don't want to confuse Daniel with his old rooms and make him think he's going back there. Luckily it's out of the way from all the other places we go so we won't visit there until we return for routine check-ups on his healing grafts.

The therapists are impressed with Dawn and I (mostly Dawn probably because she's a teacher's pet) and our willingness to step in and do the tasks once we've learned the basics. It's always nice to be recognized in this way. Because we've been responsible for Daniel and all the autism therapies and interventions we've done for his entire life, these new burn-related tasks that will be a big part of our daily tasks are things we just accept and do. Other people suddenly faced with dealing with a loved one may not be able to switch into this mode as easily as we have. I'm not looking forward to any of this believe me, but what choice do we have, ya know? We just do it!

Daniel took a really nice long walk. We went outside again today. I suggested we make it harder by going out in front of the outpatient entrance where there is a garden path with pavers and uneven surfaces, low tree limbs and other obstacles. Daniel had no difficulty. We returned to the rehabilitation floor where Daniel climbed the stairs one more time. He's more steady with each attempt.

We had a visitor today. It was Daniel's service manager Sharon from Spectrum. She will continue to be a close ally to Daniel. Soon she will move to the carriage house and may eventually become Daniel's official roommate once he's ready to live there too. In the meantime she has a lot of familiarity with life after hospitalization to help us all figure out "life after discharge". I am glad she's still a member of Team Daniel along with so many new faces we've come to know here at the hospital.

Tonight I'm out with the boys for dinner while Jamie visits Daniel and Dawn. I'm sure they will discuss the new gadgets that are part of Daniel's therapy.

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.