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!