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.
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.
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| Hanging out in Palisade with me mom for tacos! |
- 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.
