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.
==+
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!