November - whaat?

Where does the time go?

This post will focus on the laser treatments Daniel has received since my last post. Dan has some scaring on his face from the skin grafting. The burn injury and subsequent grafting can leave his skin looking pretty strange and it is no longer smooth. We think the treatments will improve his appearance.

Daniel received two laser treatments from Dr. F. using a Pulse Dye Laser. The first treatment was mid September and we only treated the left side of his face. The treatment was just 15 minutes. We all were in the room together with Daniel. He was very calm. That may be due to the desensitizing cream we applied beforehand. There were a few spots on his neck and ears that we didn't cover and he did flinch when we hit those spots. In all there were over 200 pulses with the laser using a fairly low wavelength. We knew there would be some marks left, but it didn't seem too bad. It can take a few weeks before the skin calms down after treatment so see any changes.

The latest treatment was yesterday. The doctor increased the intensity and width of the beam. As a result the temporary marks left behind where the treatment was are much darker and have left his face a bit swollen. He may be a bit uncomfortable, but we think that after a few days this will begin to calm down. In all he received over 400 pulses across both sides of his face and neck.

We get to wear bitchin' glasses!

The PD laser settings

August Update

Where are we status update? Daniel was in the hospital for 3 months! He has been home now for more than 3 months. He is doing very well with his recovery for the standpoint of his burn, grafted skin and his donor sites.

Breaking things down a little more: As far as donor sites go: I can't even tell that they used his scalp for donor skin for his face and throat.  His hair has grown back and it's more curly than before. His legs look good, but the skin is thin and fragile. His right leg looks more healed than his left leg - the left leg still looks red and sun-burned. All the normal hair growth on his right leg has returned - he's always had woolly mammoth legs!  His left leg is less healed, looks more red and the hair hasn't grown back on his shin. I think it's because the surgery team may have needed a deeper cut of skin on his left leg for the grafts they required. Dan's legs seem to itch some so he will often rub his legs together to soothe the itch. Daniel wears compression tights from DrSkin (Amazon or Target) - they look pretty cool, come in all kinds of colors and seem to provide a nice sensation of calming for his dry itchy legs. Daniel can mostly put them once we get them started for him.

Daniel's grafts on his hands and arms look pretty good too. There's a bit of webbing at the base of his right pinky finger that seems to hurt as it opens up sometimes and bleeds a little. His graft on his right elbow is tender and it looks thin - the graft seems basically "healed" for the most part. The inner part of his left elbow has a cut on it from it being bent so much that his compression garment cuts in to it and causes this wound. We put Mepilex on it as a cushion and that helps, but the wound is an ongoing problem that will probably stick around for as long as he wears his compression garments (for the next year or so).

Daniel's chest and back are healing nicely too. I think his back may look the most-healed of all his body parts and it's becoming harder to tell in a few places where a graft was and was operated on. Dan's chest and tummy look more "grafty" - you can see where the seams are if you can picture that. There are more scar bands and the skin is not as smooth looking. Along with the compression tights mentioned above he has two custom fitting compression shirts and gloves that he wears. They are in Bronco blue and orange! We alternate wearing days with them as we wears each about 23 hours per day! This will help his skin to heal more nicely.

Daniel's neck and face continue to heal. This burn recovery is a long trek - healing and improvements will occur for more than a year! We met with a plastic surgeon this week to learn about our options with improving the look of his grafts on his face and neck.

Dr. F. (or was it Dr. E.?) took time to explain how a "laser beam" can be used to improve Daniel's burn scars. We will be learning a lot more about this process in the coming months.

Daily routine:
Daniel wakes up and showers. Right after a shower we lotion his entire body to keep his moist. Then we help him get dressed - putting on his underwear, tights, compressions shirt and gloves, socks and he finishes with his shoes. The compression garment is really tight and the zipper is on the back. We can usually get it on him with only one person, but it makes it a lot easier with both Dawn and I helping. Suffice to say there's no way Daniel could do this on his own.

If he's going out (and we try to get him out every day) we slather on suntan lotion on any exposed skin. He wears a worn out old cowboy hat and we cover his compression shirt with an extra shirt, cover his neck and try to really protect him from the sun's rays. We limit outside walks to early morning or late evening when the sun has set. Since it's been overcast a lot of afternoons with rain threatening we can get out for a walk then too. When Daniel returns home he is anxious to get his extra shirt off which miraculously he is able to do with some Houdini moves he's figured out (Remember - his elbows DO NOT bend).

Daniel's weight continues to go up. He was at his lowest in the hospital at under 100 pounds and is now weighing in at around 123 pounds. (That's more than he's ever weighed before). It's fair to say that we are cramming food in him as it will help him heal. (Remember - his body is still hyper metabolic and in extreme healing mode). We're starting to lower his calorie intake, but it's higher still than a normal calorie intake.

Hanging out in Palisade with me mom for tacos!

Therapy: Every day Daniel:

• gets a burn scar massage of his face and neck from Dad, 
• a stretching session of his shoulders with mom, 
• he wears JSS splints to stretch and work the slight bit of motion he has in his elbows, 
• he sits in the CPM device to also work his shoulders,
• he wears an MPA to stretch his mouth and lips,
• he wears a face mask while sleeping for ~8 hours.

We try to schedule his PT/OT session each week while we still have service hours.

If Dan seems like his skin is overly sensitive we try to help with skin desensitization using various items to help calm his nerves.

We also take him for a weekly massage with a massage therapist that he enjoys and or course he goes to his therapeutic horse riding, swimming at swim labs, and goes on walks with us to exercise the dogs. Less frequently now he has burn care visits at the burn center to make sure he's healing well. We review all his scars, discuss his medications, and discuss other things going on with his recovery. The burn center at UC Health is pretty comprehensive. I've never felt better cared for!

In other news, I think the burn staff recently let it slip that my application to attend the World Burn Congress in October has been accepted. I'm pretty excited to see how that all plays out, but for now I'll leave it there until I know it's official.

Us:
So from all the above you can imagine that there's a lot of tasks keeping the parents busy supporting the healing process for our son. I won't list all of the duties and tasks, but there's a lot going on with our daily burn-recovery routine beyond just having a son with autism. This is our new normal and it requires that we stay on top of things. Now that we've adjusted it's not such a bad thing, but it does take a lot of work.

We both enjoy our weekly date-night (when that comes together) and getting little breaks to ride bike, go on a walk or just get away to do something away from the house.

Other:
Here's a resource for more detail about laser treatments on skin grafts.

Orthopedic Followup

We met with a new orthopedic Dr. today at UC Health. He is Dr. S. and has experience with heterotopic ossification (HO) patients. We didn't learn anything too much from the meeting that we had not heard or read already, but we have a clearer idea of specifically of Daniel's HO in his elbows. We don't think it is in any other joints, but from the questions they are asking we think they were exploring to see if HO had appeared in his wrists, shoulders or elsewhere. We don't think that's the case so we're just focusing on the elbows.

We looked at Daniel's x-rays and you could see very clearly the HO that had developed in both elbows. These x-rays were from April. In both arms you can see the cloudy area under and on the backside of his elbow where the calcified bits have formed. The growth mechanically blocks his elbows from moving. It's not that it would be painful to bend them, it is not even possible to move them. The new calcified areas block the joints from moving and limit the musculature and connective tissue from moving too.

Left elbow

Right elbow

The doctor confirmed that Daniel will need to wait for 12 months from the date of his burn before they will consult and consider surgery. With the amount of HO in both elbows (which is pretty significant) there isn't a way to break free as some patients have self-reported. We suspect they may have less significant HO if they were able to get their range of motion back. We don't think that's possible now that we've reviewed the x-rays with this doctor.

As mentioned in prior posts, HO takes a while to settle down. That's the reason for waiting until his "burnaversary" on January 25th. At that time we would need to get a CT Scan that will give a 3D view of the elbow. Sitting still in a CT scan machine for 15 minutes would probably be a challenge for Daniel so we'll need to think that over, but we have time to think that through. With a CT scan we can begin to discuss surgery options or other things at that time.

Until then we need to follow up with a few new ideas we've considered. One of them is how to keep the muscle, ligaments and tendons in some kind of shape so that he could use them again. Right now I don't have a good answer for that. We already discussed the idea of E-stim (electronic stimulation), but because of the burned and grafted skin that is not an option the burn doctors would support. Other ideas we will explore. Any thoughts anyone? Feel free to comment!
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Coming up in August (next month) - a meeting with plastic surgery doctors to review options for his face grafts. More on that later.

Daniel's Progress

It's been nearly two months since Daniel returned home with us. He's adjusted well and there's some cool accomplishments he's managed to achieve. So in no particular order here's some highlights.

Last week we coordinated a meetup with Daniel's PT to go hiking. He found a short hike at Lair O' the Bear that was shady and short. Daniel was easily up to the task and marched at his usual breakneck speed on the hike. He impressed his PT and had no issues with the climbing and unusual terrain we crossed. All we had to do was keep him cool and covered up from the harmful sun. Luckily it was a cool morning and we didn't spend too much time on the hike.

Daniel was cleared for hippotherapy or therapeutic horseback riding at the Right Step in Littleton. Before leaving for a session we always get out his cowboy boots and jeans to wear and then he knows where we are going in the car. Once we arrived Daniel ran to the barn to find the team and his old pal Louie all saddled up for Daniel's first ride. Daniel was amazing and seemed to enjoy his lesson even with a new instructor.

We've always wondered if Daniel knew or understood how he caught on fire from the gas burner on the stove. We haven't involved him in cooking (yet) and he doesn't seem to act scared in the kitchen, but something happened today that changes all that. Several days ago Daniel was working one-on-one with his behavioral specialist Hannah. Daniel and Hannah have only been working together a short time so she is still learning about his quirks and limited language. They were making a batch of brownies and Daniel was helping with the mixing and stirring. Dawn entered the kitchen, turned on the oven and left them to continue.

The evil stove where his shirt caught on fire

When it was time to put the brownies in the oven (below the stove where he caught on fire) Daniel grabbed his talker and showed this picture of FIRE to Hannah.

This is not a picture he would choose randomly and it's just so significant and striking to me that he would use his talker to make this statement. This action is something extremely unusual for Daniel as he rarely initiates communicating with his talker device (iPad). But we conclude that he knew something about the stove/oven and it equaled FIRE. He wanted to let Hannah know about it too. She told us about it afterward. It sends chills up my arms when I think about it. It also makes me sad...  😧  I haven't fully processed why that is.

Another achievement in Daniel's life is that he can move and bend his arms so that he can scratch his nose. Sounds funny huh. He can touch his head and hair. That's been a nice breakthrough. He's finding all kinds of ways to bend and reach so that he can do more self-help things like getting his socks and shoes on in the morning. I credit much of his greater range of motion to Dawn and Daniel himself who go through about 6 hours of various types of stretching & skin therapy daily! Dawn is the taskmaster driving many of these daily activities.

One last neato accomplishment (I can boast can't I?) is that Daniel learned with his OT that he can lay on his big therapy ball on his tummy again. I think he's been wanting to do that for awhile, but he couldn't quite move his body in a way that would be comfortable - until now. He used to do this all the time and could balance and roll around. It's a great way to stretch.

A few days ago we took an evening walk and stopped for some nice cream, but not before we took this photo of Daniel with his new wings and rainbows in the background.

Phoenix rising

In other news we visited the burn clinic today next to the burn ICU where he spent so much time. His checkup was good and Doctor Cammie remarked that his skin looked really soft and healthy. She also cleared him for swimming so we can begin to do weekly swims soon at Swimlabs. We've been slowly weaning Daniel off his pain meds and we've seen no issues with this so we continue to move him away from the various medications that's he's taking.

After the checkup Daniel and I walked over to the burn ICU for a quick visit and we saw many of his nurses, his surgeon and a few therapists who all helped him through the most difficult weeks. It was like a mini reunion! Daniel was giving out high-fives. They were really glad to see him and I think he felt good about the visit too. Then we rejoined Dawn and headed out to the car and back home.

Generally Daniel seems pretty happy. He's gaining weight and he eats well - maybe better than ever.

Are there times when he's difficult? Sure, we're seeing that part of him too. That's something we've been working on most of his life. With some of the new resources and people helping Daniel now we think we can make improvements. It's got to be tough when you don't talk or tell people what's wrong. Somehow through all this and Daniel's other challenges he seems to be cheerful. I love that about him!

Transitions

Dan - stretching shoulder in the CPM beast.

Daniel has been doing really well lately with all his healing and recovery. There are growing concerns that I'll mention, but first let's tick off the accomplishments.

Daniel had some very alarming test results regarding his liver when he moved from ICU to Acute Rehab - this was back in early-mid April. In fact he was delayed about a week before they let him leave the ICU floor until his liver numbers began to spiral down. Our follow up this week confirmed that his liver is once again fine and that while we and the doctors don't really know for sure what caused the problem, all is well now. All his test numbers for his liver are within the normal range. The most likely cause is some kind of reaction to all the numerous medications he was on, but really we can't know for sure and since it's all okay now, we can put that worry to rest.

The giant friction blister on his leg is nearly all healed. He got another small one on the back of his calf, but it's healing too. No signs of infection or problems.

Daniel's range of motion in his shoulders is increasing. I credit all the daily stretching that Dawn and he do together for most of this progress. We think he enjoys this special face-to-face time with mom at least until the actual painful stretching commences. He also receives visits a few times per week from an OT and PT that also find ways to work Daniel and engage him in activities that work his arms. All this activity helps him to use his arms in the limited ways he is able.

Daniel can get in and out of a car with ease. He is able to fasten his own seat belt too. He still claims shot-gun, but I suspect Dawn will begin to negotiate that with him soon.

Dan is doing walks in the early morning and late evening. We keep him out of the sun and cover him up, slather on the lotion and keep him safe. His skin is really sensitive and fragile. It can burn easily and it can also bruise easily.

Daniel seems to have no issues with moving his body around the house. By that I mean that he knows his own body and its capabilities. He is careful where he needs to be, knows where to duck, how to move slowly and purposefully on stairs and around furniture. He has never fallen or tripped - if that were to happen he would probably injure himself and I can tell that he doesn't want that to happen.

Daniel is getting out of the house when possible. He goes with us on short grocery shopping trips. He handles the cart and seems to enjoy the outing as he used to. He also enjoys walking the block to a place where he can get a massage. His therapist - Jason is very gentle with him and his skin. The only hard part for Daniel is laying face down on the table and getting back up. We all three help him with that process and once in position he relaxes and enjoys it a lot!

We have to make various frequent trips to doctors and offices for checkups. Daniel hates waiting in an empty exam room and he hates car traffic going to and from, but is pretty patient and at ease once the nurses and doctors start examining him.

Daniel's pain seems to be managed well and we are steadily backing off his pain medications which is great because that will also help with BMs and what not. The more medications we can wean him off the better it is for his liver and kidneys so again, we're glad to see him handling all this so well.

Daniel has gained weight. Daniel weighs more now than he did when he entered the ICU in January. That's treat progress. He seems more content with eating and doesn't complain all that much when eating. Last week we took him out to dinner for Mexican food and he was awesome. Sure we get a lot of stares because his face still looks pretty gnarly and he holds his arms weird and wears odd garments (all part of the burn scene man), but if he can muster a smile it doesn't bother us what other people think. Nothing new there - we've been dealing with strangers and their glances for a long time.

More and more Daniel seems to be expressing his happy feelings. That's been a long time coming and it feels wonderful when his happiness shines out to us. So on the whole he's really doing well. We see smiles, happy hoots (you know the ones) and he wags his tail (if you know him, you'll know what that looks like).
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Things that we are concerned about: - the big one is his HO (heterotopic ossification) in his elbows. We've begun to notice that his fingers and nails turn blue at times and we think the circulation is restricted when his elbows are bent in flexion. That's a concern and we haven't found anyone who can address it - yet. HO occurs in about 20% of burn patients and is not an affliction that many people seem to know much about. His burn surgeons don't have good suggestions - it's not their area of expertise. The rehab doctors haven't responded yet either, but this isn't an area they really focus on so I doubt they will be much help other than to refer.

Today we had a routine visit with the burn clinic and were able to get a referral to orthopedic offices. We will see if they can turn up anything or have some expertise with HO. We think that seeing an orthopedic doctor this is the best direction to go, but we need to talk to them and see what they think.

We have a few contacts with other burn survivors who had HO and may be of some help and can tell us what it's like, what they did or who they worked with, but right now we're in a holding pattern. Dawn has found some articles on-line, but not a lot that seems to help us with what we need. Most of what we've read is somewhat depressing frankly.

With all the weight Daniel has gained, his compression garments seem a bit tight so we'll be asking for alterations for that next week. That could also be a cause of the restricted blood flow to his hands, but we've seen the problem when he's not wearing his garment so it's not the sole cause.
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Well that about sums up things with Daniel and his great progress.
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Me - Yesterday was my final day at work at Euclid. It was another bittersweet day for me. Once I was finally at home I felt a bit depressed and unsure of what to feel really. I have no immediate plans for work and don't want to think about that until this fall. By then we will have a better handle on Daniel's needs and I'll have a handle on what I want to do with the next few years for myself. So rather than rattle on with this or that I'll just say that I plan to enjoy the summer in whatever way I can and put plans for work on hold until the fall or later. No pressure - if that's possible??

So for the next couple of months I've hoping to connect with friends for a beer, a bike ride or maybe some hikes. I'm even doing a triathlon this weekend so that will feel like an accomplishment to be able to that for myself.

Dawn and I were able to go out for a date night a few days ago and we had a good time walking down to Lodo and enjoying a nice relaxed meal. We've also escaped for lunch dates while Daniel is with a respite provider. So, we are getting out together and that's good for us right now. Soon we may be able to do some kind of overnight away as we've got people who are slowly learning to work with Daniel in our absence. It could be later this summer or who knows when, but just knowing it's a possibility is great.

We're also thinking that Daniel is ready to travel some and we hope to visit Amanda out west shortly.
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So if you see us walking around the neighborhood or want to stop in and say hi, we are often at home or nearby doing some "fun" therapy with Daniel every day. Don't be shy.

Checking In

It's been several weeks since I posted.
I'll answer some of the common questions I've been hearing and update as to where we are at.

Dan's big giant blister is healing up and looks better every day. He got another smaller one this week, but it is closer in size to a silver dollar. It happened the night before we were to go to wound care (again) and they felt it was better to let it heal without slicing his skin and removing it. The burn care staff remarked that we may see more of them before he's all healed and that it is likely to occur on his legs where the donor sites were for his skin grafts. (Could that mean we see these things for a year or more?)

In many ways Daniel is acting more like the Daniel we knew before all this happened. He sometimes smiles in the morning, we hear giggles now and then and he seems just happier all around. When that happens it feels so good and makes this journey all worthwhile. It's like, "yea that's what we have been waiting for" - happy Dan is a really nice thing even if it's fleeting.

He also has pained/grumpy moments too. Sometimes he gets really upset and we just can't figure out what he needs/wants. That's really frustrating for all of us. When it's like this we can't tell if he's in pain, or if he needs something trivial like just a new video to watch. That "sucks" - sorry there's no better way to describe it! I really hate moments like this because for the first time in MANY MANY years I really have no idea what to do to help him. It's times like this when I wish I had a magic pill to make it all go away. Sometimes what seems best is to give him space and let him work through whatever is going on; then regroup and maybe he can communicate something to us that we can do to mitigate his distress. (This happened today - I thought he was in pain from wearing the elbow splints, but hesitated to give him some meds and just waited it out. It turned out he just needed to watch a video - as that settled him down). grrr

Dan seems to be doing really well with the visits to the clinics, rehab doctors, wound care checkups and all the other doctor exam room visits we've taken him through. The traffic around Denver is getting worse all the time. He doesn't like sitting in traffic. That seems to make him irritable more than the doctor visits. We think he understands that all the people we see in exam rooms are there to help him and he can wait through their boring talks with mom and dad. When it starts to go wrong we whip out the candy...

Here's some questions I've been asked lately:
What are his long-term prospects? He will probably have limited movement in his elbows for up to 18 months. Maybe sooner like 6 months before we could do anything, but the longer timeframe is more likely. This is due to the heterotrophic ossification (calcium deposits) in his elbow joints. It's super painful, that much I can tell. Our rehab doctor (Dr. Payne - not kidding) is reaching out to doctors who know more about this specific malady that some burn patients experience. We'd like to find someone who has a successful track record with surgeries to release the elbows, but that could mean a long 18 months before Dan gets the use of his arms back.

Shoulders - this area also needs attention for more in to the 18 month timeframe when one's body begins to settle down from this horrific injury. Many burn survivors opt for a contracture-release surgery where they basically slice your armpits open with a zig-zag cut that allows the skin to stretch more. I'm simplifying this procedure, but once the skin begins to not tighten up so much this
operation is done to allow greater range of motion. Until then it's button-up shirts (not pullover) and a lot of assistance with dressing, self-care and challenges with anything involving the use of the arms - so basically everything in life! Until then we stretch Daniel and work his scar bands to help his skin to heal and not be so tight. If we didn't do all this stretching his arms would pull in and he'd be curled up in a tight ball. Yup - that kinda sucks too. Aren't burn injuries fun? grrr

Based on other burn patients I've seen, Daniel may appear remarkably all healed (on the outside) in a couple of years. The skin will heal, smooth out and look really normal eventually as long as we stick to all the therapy, compression garments, and keep him healthy. Until then each and EVERY day we have to commit to doing all that we do for him. It's a grind and Dawn is way better and sticking to it than I am. I'm better and doing errands and getting out of the house for a bit to tackle all the other things we need to keep the house running.

How are we holding up? Eh - not bad I guess. I've gone back to work a little bit to finish up the school year and turn things over to someone else in the fall. I can't pretend to continue working thinking things are all hunky-dory. I'll take some time away from work commitments and see where/what I might want to be when I grow up later this year or sometime in the future.

Dawn seems to be handling this really well. She super! Her professor gig allows her the ability to be here for Daniel and I can cover things when she's lecturing, but that won't start back up until August.

We're slowly beginning to bring back service providers into our world. That will help for us to get away here and there and get Daniel on track to do more things independent from us. Our long-term goal of moving him to the carriage house in back of our house is on hold, but bits and pieces are coming together just not on track with what he had envisioned before the burn. This is an ever-evolving grand puzzle we have for Daniel and his future. Some pieces start to fit, then a few setbacks, we regroup and find other puzzle pieces that seem to fit around the edges that we hadn't see before. The whole puzzle may never be complete, but we do make progress even if it seems murky at times.

Friction...

Daniel got a blister. You see we took Daniel in to the burn center for his first wound care visit. Everything was going well. The nurse looked him over and we discussed his elbow and a few other minor problems. Daniel was tolerating things pretty well, but did stomp his feet a few times which is kind of his normal coping strategy these days. (Wondering if those stomps were part of the cause of what I'm about to discuss).

We brought in his new burn garment and put it on. The OTs examined him and liked the fit. They suggested we get his new garment with zippers installed on his gloves (a 2nd set) since he will wear them 23 hours per day for the next year. Everything was going well and we were leaving the room. As Daniel hopped off the exam bench he seemed to be favoring his leg like it had fallen asleep. He also seemed to be complaining verbally like his leg hurt, but we thought it was from the new garment or just being tired of being examined by all these people. We stopped at the bathroom and as Daniel stood up he would not put any weight on his leg. He didn't even want to stand up so I knew something was wrong.

I opened the door of the bathroom but Daniel would not walk. I got him the few steps outside where Dawn was talking with his old burn pharmacist C. Something was wrong! I pulled up his leg thinking he had hurt his knee from the way he was barely putting any weight on it and that's when we saw this:

At first we all thought it was a compound fracture then the nurses determined that it was an edema over an area on his leg where donor skin had been harvested for his body grafts over a month ago. I carried him back to the exam room, they contacted his surgeon Dr. Wa. and she stopped in to confirmed it was a friction blister. No one had seen one this large though! Daniel was in a lot of pain and looked pretty worried about his leg, but he remained really calm.

Once the staff got their supplies ready the resident doctor used a scalpel to slice his leg open and basically pull out this giant blood blister as a big swollen glob. The opening itself was probably about six inches long. Once the blister was removed his leg was wrapped and we were on our way. No stitches were put in. Instead the wound will heal better and the skin will adhere and heal, but until then he will have this slice open on his leg. We had to make another appointment for this injury at the burn center for Friday. We've got instructions on how to care for it. The surgeon thinks it would be fine and was really calm through the emergency. The other staff were pretty wide-eyed as was I.

This was just another surprise injury that the burn keeps on giving us. I'll end with this extra picture so you can enjoy the thrill of seeing a big-ass blister. Next time you get a little booboo blister on your toe think of this and you'll know it can always be a lot worse.

Luckily (if there's an upside) we were in a hospital and had very competent staff deal with it immediately. Poor Daniel. But I'm glad this didn't happen at home as it would have taken a lot more time to get relief for Daniel. And I will state that as soon as the blister was burst open (staff were standing back like 'it was gonna blow') Daniel seemed to really relax and let them finish up with the dressing.

Daniel is being given some space and we'll let him relax the rest of the day since this was a pretty freaky moment. We hope he doesn't pair this incident with 'bad things always happen at this hospital place'. That's all for now.

About a week out

Daniel was discharged from the hospital six days ago and we've begun to settle in with our new daily routine.
I'll break down items of interest (at least to me):

Skin - it's all fragile. Most of his skin grafts are healing and are acting more like skin; by that I mean that he doesn't have skin that's open except for his right elbow and a few scabs on his legs from where he's scratched them due to itching. A slight bump can turn into a bruise and changes color to purple and red. The new skin can tear and scrape easily. Continued care for his skin will go on for years, but I think it will toughen in a few months.

We have to be careful with any sun exposure. This new skin is super sensitive to UV rays. We're going on walks only in the morning or evening when the sun is low. We bundle him up so there's not much exposed skin. He wears a hat, gloves and sunglasses anytime he goes outside. This extra care will continue for many years!

His skin is not nearly as dry as it seemed to be in the hospital so we aren't needing to lotion him nearly as often. We were using tubeflex on his arms and legs, but we've stopped that. Instead, for his legs he's wearing tight leggings or long underwear. For his arms we're leaving them alone for now. He likes wearing his fingerless gloves and chases me around if I forget to put them on after a shower.

The reason we (hospital staff and us too) thought it was good to wear the tubeflex on his arms and legs was that it helped with his itching, but at home we've found that he isn't itching as much and the tubeflex was cutting into his new skin on his legs and elbows - it was doing harm! The stuff was so tight (even after we went up several sizes) that where he had wounds with mepilex on it the spots were indenting his skin leaving more purple bruises. If I learned anything up to this point it's that the tubeflex was probably a good idea to start with on newly grafted skin, but at this point it's not good to continue.

The one spot that continues to concern us is that open wound on his elbow. Now that he's had two days without the tubeflex it is looking better, but not healed yet. We've applied bacitracin or sometimes just mepilex then wrap it loosely but firmly in gauze. That seems to be what will help his elbow heal correctly and allow the skin to form properly, scab up and eventually behave like skin again.

Showers - He absolutely loathed showering in the hospital. (Remember the fire hose of death from Day 87?) He acted like it stung, hurt or just didn't feel good then, but once we reintroduced the shower in his own bedroom he started to enjoy it. Not the first time, mind you, but thereafter it's gone much better. We're showering every other day as before. He seems to enjoy showers again as long as we don't soap him up too much or spend a lot of time shampooing his head - that he still dislikes "with extreme prejudice".

Wound care - Now that he's pretty sealed up there's not too much to wound care. We apply lots of lotion and try to inspect every inch of his skin for any issues or concerns. His body looks better every day so that's a rewarding thing to see. We just have to keep it that way - prevent him from itching, try not to mangle him when dressing and wearing devices, that sort of thing.

Input - Daniel continues to be hypermetabolic. That much is obvious. We weighed him this morning and he weighed 106.8 lbs. Yikes. Maybe our scale is reading lower the hospital (and if so then I weigh more than I thought too - sad). Anyway we're feeding and tracking his calories and protein intake as before. We've set higher targets than the nutritionist did when he was in the ICU, but Daniel is managing to meet our goals each day (or at least exceeding her targets) and it's a lot easier at home to do the feeding, but of course the food prep time is added now compared to calling room service at the hospital. Daniel is able to get food to his mouth much better as well although we are assisting with all meals and sometimes alternating between bites to get him to participate. It's hard, but he manages to bend his left arm just enough that he can get small bites into his mouth.

Output - the opioids continue to clog and slow things down and we're finding a balance with adding the right blend of laxatives. Let's just say this is a work in progress.

Movement - Daniel makes strides every day with walking. He is able to walk around the block and even go further. He has a little problem with balance since his arms are hanging with his elbows in a locked position. Taking all the stairs doesn't seem to be a big problem; we have confidence in his moving around the house safely. Getting up from a chair and bed is going fine too. He needs a little help, but usually can do it on his own.

Stretching - Dan likes the stretching time we do each day. If there are distractions or one of us (like me) isn't attending to him he gets upset. This seems to be our special Daniel bonding time! His range of motion in his shoulders is increasing slightly and we're really pleased to see this going so well. The thing is we can't stop. We have to do this every day or his skin will tighten and limit his ability to move. Luckily he's been real receptive to it. We're still giving pain meds right before this task, but will try to wean it down after a few more days.

The stretching takes about 45 minutes to complete. We work the skin in all the target areas and try to hold in a stretched extension (or flexion) for a couple of minutes, then relax and do it again several times. It involves stretching around his mouth - this he likes the least - with our fingers and thumbs. It breaks down the scar tissue and releases the skin so it doesn't pull his lips open - allowing him to close his mouth.

Next we work the shoulders - Dawn will do the stretching and I'll work the scar tissue that blanches when it's pulled tight. We have to start with easy stretches then build and extend them in successive movements. We've been told that doing a hold in the extended position for 2 minutes is best so that's what we try to do.

SCOI - aka the gunslinger - It stretches the shoulder in a fixed position for an extended period of time. We're doing each shoulder for about an hour daily if we can. He's set up with an angle of 95 degrees. Picture your arm being held out at a right angle and having to hold it there for an hour. Doesn't sound like fun, but Daniel does great.

JSS Splints - aka jazzercise - It allows us to set flexion and extension of his elbows. Because he has HO in his elbows they won't move beyond a few degrees. We're trying to maintain and maybe extend that using these splints that hold his elbow at a set angle. We're doing this about 30 minutes per arm at flexion and another 30 minutes at extension.

CPS - continuous passive motion - it is a motorized device that moves his shoulder and stretches and holds his arm at a peak. We're doing this about 30 minutes every day on each shoulder for abduction and flexion. We could also set up the machine to do rotation, but we're not at this time. The CPM device moves his shoulder back and forth passively so he isn't having to use his muscles to work the motion - it does the work for him as long as he's able to stretch to the limits we set.

Faceplate - Daniel wears this to bed all night. It will help flatten and smooth the skin on his face, throat and neck. We have seen dramatic improvement of his skin from using this device. Another modified faceplate is being built for Dan. We'll have it in a week or so and it will target areas the first one isn't hitting.

MPA - stretches his mouth and skin around his mouth and lips. We wear this about an hour per day in 30 minute sets.

Garments - Daniel received his special burn garment and gloves. They are in bronco blue with orange zipper and detail. We tried it on at the office on Friday, but we're holding off on wearing the "shirt" until after we have our first follow up with wound care as an outpatient in the burn center tomorrow. This shirt is super tight fitting and will help smooth and heal the skin on his torso, arms and fingers. It has a zipper up the back and down each arm. The fit is good - super tight! He's supposed to wear this 23 hours per day EVERY DAY while we wash it and let it dry for an hour. Right now the fit is so tight that it scrapes his elbow when we put it on so we have to be careful using it. I think we'll need to use a shoehorn device to get it past his elbow next time we try it on.

Medications - he's on a lot of them still. Managing them, keeping prescriptions up will be easier in about a month when some if it is automated. Until then it takes some extra work on Dawn's part mostly. I do all the cooking, she does most of the meds for now.
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By now you can tell that Daniel is busy just doing all this therapy as a daily ritual. That means we're even busier because we have to set him up in all these devices, measure and record it and keep things moving! Add to that taking care of ourselves, the house, the dogs, grocery shopping, and setting up meetings with therapists, doctors, specialists and you name what else... So yeah we're busy and this is likely to go on for the next year or more.

It took me some time to adjust to our new new normal. We spent the past 90 days with Daniel in the hospital - we were there every day for 10+ hours. But when we left each night we could slightly separate ourselves from the ordeal by going home for a few hours, get some sleep and reset for the next day. That little break each night from the hospital was nice in a way. It allowed me to live two lives - hospital-mode and recharge-mode at home.

Now we don't have that separation anymore and frankly that was a bit hard for me to switch on to. I could easily start on a thought process about how this is going to go on for years in our home and get kind of depressed. That was bumming me out and I felt really trapped. It took me a few days to reset, reboot, rethink this and get back to where I was just thinking about today, maybe tomorrow and not worrying about where all this will lead further out in time.

So "time" was my enemy in all this and I felt overwhelmed, down and out. I was facing a wall of despair and self-pity. It was super easy for me to slip into a downward spiral over this; his outcomes, how he will have to live the rest of his life, how it might affect me... lots of crappy stuff and negativity.

I'm glad to say I think I'm feeling a lot better about "time". Just writing this shit down and getting it out of my system feels good. Sorry if I'm dumping it out there, but that's what my past week felt like. I have no clear idea what I will be doing in a year. That's a bit strange too. I want to help Daniel heal and that's all that really matters right now. Until that settles down I won't try to dwell on my future (or his too much either). Maybe I'll work again, maybe I'll try to engage in other retirement-like activities. In the meantime if I can sneak in a 5k race, maybe a triathlon or bike tour I'll try and make it happen - that stuff keeps me sane.

We have help coming in the form of therapists and respite providers. That will help too although it's a trade-off having a flow of people in our home helping Daniel to progress and trying to find solace in that same home. Eventually Daniel will be able to assume some of his former life - going to a day program for adults perhaps, eating out with us, work on his behaviors and spend time with respite providers giving us some time off - even it that's just a nap upstairs. Things will get better.

Sanctuary!

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.

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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!