Left Elbow - done!

Yesterday September 25, 2018

Surgery today is for his left elbow 💪🏽. You may recall that Daniel got a rare complication from his burn. Both of his elbows became immovable once heterotopic ossification settled in to both of them. He had surgery on his right elbow in May 2018 and his recovery has been great and exceeded our expectations. Today's operation was for the left elbow - it turned out to be a little easier than the right elbow as the bone had not grown into a tunnel around the ulnar nerve like it did on the right side. 

Daniel is happy and skipping into the hospital like he always does. He likes the attention from all the friendly staff! [this surgery is to remove the new bone that grew into his elbow joint after his gnarly burn last year]. Surgery #13 lucky. 🤗 No more surgeries planned after this one.

Here's some pics to enjoy: He gets so happy when he goes to the hospital. Doesn't everyone?

Here's a picture on Daniel a few hours after surgery. He is home now and already using the CPM machine to work his other elbow. The CPM (continuous passive motion) device does this slow stretching movement for about 90 minutes every day (or the length of one Disney video). Today he began doing this stretching on both arms and that will continue for another 6 months so that we ensure the HO does not return! Lots of Disney videos are watched in our house.

This picture is an xray of Daniel's elbow after the removal of the extra bone mass that grew into his joint. He has a complete range of motion now. Before he has maybe 10 degress of range, but it was mostly locked in about a 90 degree angle.

fascinating!

Right elbow update - 2 days after surgery

A more thorough description follows with what was done to Daniel's right elbow... and then what he did to it afterwards... 😮

Daniel had surgery on Monday April 30th starting about 1pm. He was admitted at 11:30am and prepped for surgery.

The pre-hospital prep procedure was typical for a surgery - fast after midnight the night before and only water or preferably apple juice (that's new) that morning up until 9:30am. Some medications he's taking had to be suspended for the day or week leading up to the surgery. Also new to us for a surgical procedure was using Hibiclens cleaning solution during a shower the night before and the morning of surgery. We are quite familiar with Hibiclens from his infamous tub-room cleanings in the ICU, just not for a typical surgery. I think it's a good idea to do this extra washing from a avoid-infection mind-set. Also we had to avoid putting oil or lotion on his skin the morning of the surgery. We have used Emu Oil every day since his burn and it seems to have made his skin quite nice. The oils prevent the electrode sensor pads from sticking when they apply them in pre-op.

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The surgery went well. The doctor reported a range of motion of from between 20 - 135 degrees which is HUGE! Going in to the surgery we didn't think that we would see that kind of range of motion. We were told that this range might decrease, but we are doing all that we can with stretching and physical therapy to get that range as maximum as we can. During the surgery he was anesthetized, given Tylenol, Fentanyl, Ketamine and Oxycodone - all very strong stuff!

For pain we were given Tylenol and Oxycodone to use at home. So far we have held off on using the oxy. It has all those negative side-effects and as you'll read in a moment we don't think he's in such extreme pain that we need to give it - but it's there if we need to administer it at any time. They also gave him a scopolamine patch (seasickness) to help with the aftereffects and feeling of motion-sickness.

In the post-op recovery area he needed about two hours to get back to normal. His anesthesiologist check-in with him/us several times during the procedure. His surgeon Dr. C. also was there and writing up and discussing our next steps - We felt a lot of support from the hospital staff through all of the surgery.

After the surgery Dan's elbow was wrapped in heavy gauze and ace bandages making his arm and elbow look quite large. Underneath all that there's the obvious swelling. Under all that dressing is his swollen arm with two 6-inch posterior incisions along both sides of his elbow - a picture just isn't pretty for this... Obviously the incisions were all stitches up and those will be removed in two weeks. Near the end of each the incision were tubes to allow for draining.

During the first night home even though Dan seemed to be pretty heavily out of it, he decided to unwrap his arm, yank out the tubes and bleed all over his bedding. We think he did this shortly before his wakeup time in the morning. We found him sitting up waiting for us in the morning like we usually do with him, but of course we were shocked to see his arm all unwrapped, blood all over and um yea - bleechk!

We scrambled to get fresh dressing and called the surgeon's office to get an idea of how this might effect his recovery. With his tubes out of his arm the concern is that he might develop hematomas near his wound site that would have to be addressed. The tubes were in place to allow all the bleeding to seep out and drain into the dressing. His tubes were to be removed on Friday - three days after the surgery.

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So far there's no obvious indication (to us) that there's a problem. but we don't know really it there's an unseen problem lurking under his skin. His doctor will look him over on Friday as scheduled and we'll decide how to move forward.

Yesterday (day 1) we got his arm moving, but took it a little easy on him. Through all the movement Daniel didn't seem to be showing any signs of being in a lot of pain, but we know he's a tough guy. If it were me I think I'd be using the pain meds more, but Daniel is a special guy and seems to process pain differently than most people, or least me anyway. All we're giving him is Tylenol.

Last night (2nd night) Daniel yanked off his dressing twice. The first time I wrapped it up  and decided to camp out and listen closely all night, but I didn't hear any obvious noises. He can do this quietly apparently. The 2nd time this happened I was in the room sleeping by his bedside, but didn't even hear him do it. There was no large amount of bleeding or seepage from these incidents. He doesn't seem to be in pain while doing this and we're hoping he hasn't inflicted any damage to his sutures or skin.

This morning after a shower (his arm is all wrapped in his dressing and a plastic bag to keep it dry) we had him all dressed and ready to go eat breakfast. Dawn left him alone for less than 60 seconds and in less time he had already removed the dressing AGAIN and was leaving drops of blood around the house as he walked up to his room. He seems to know he should not remove it, but waits for any quick chance to slip out of it.

This last time he bled quite a bit - maybe that's good as that's what is supposed to be happening??? We only know now that we have to be in complete contact and watching him closely so we can't leave him alone even for a moment! He can be determined and single-minded in purpose once he decides something. So with teamwork we will keep his dressing on until we meet with his doctor in the morning tomorrow.

Tonight I think we will need to sleep in his bed with him so he knows we are "watching" and we are aware of ANY stirring going on.  Wish us luck!

Elbow Surgery for HO

It's been one year and 3 months since Daniel's burn accident. It's been a long journey, but we've reached the point where an operation on his elbows is possible. We chose his right elbow for the first operation. Why? That's his dominant hand and it doesn't bend at all. The left elbow bends only a little, but it's bent at about 90 degrees and that's enough of a bend that he can feed his face, scratch his head and get a lot of other things (with difficulty and a bit of creativity) done. His right elbow is locked at about 45 degrees - so not as useful at this time except to put on socks.

We met with several orthopedic specialists and we think his orthopedic surgeon Dr. C. is great! We are fortunate to have her performing his surgery. She was very patient and thoughtful throughout the process of meeting, planning and performing the surgery. She had various other support people that we also met with and the team worked really well together. (Plastic surgeon, anesthesiologist, nurses, techs). She's also about to have a baby so there was a backup colleague observing and standing by in the OR - just in case!

Short recap: You may recall that the burn caused a somewhat rare response in his body that caused bone to grow outside of both his elbows. It happens in some burn patients. It's called heterotopic ossification or HO. I've written about it in prior posts so I won't go into more detail, but suffice to say - it sucks for all kinds of reasons!!

Daniel was super happy this morning. We had to get a bit crafty with preventing him from eating anything the entire morning and lunchtime. We tanked him up with food the night before, gave him an extra meal before bedtime and then kept him distracted in the morning. When we left for the hospital he was smiling and happy and skipping. When we arrived his festive mood continued. No one could be happier. Who does this before a major surgery?

He brought smiles to all the other waiting people in the surgery waiting area. We got him in his gown and he snuggled into his surgical bed with a warm blanket and waited while they prepped him with wires, monitors, and IV. It was only after a lot of boring discussion, signature releases, and poking/prodding that he got a bit quieter and settled down.

We received positive updates from the OR nurse after 2 hours, and after 3+ hours the operation was complete. We met with Dr. C. who had pictures to show his now extensive range of motion. Before he had zero, now he has from 20 - 135 degrees of motion in his elbow! That's about the best outcome possible we could have hoped for. Once he heals the range might lessen some, but for now we are excited with this result. If his recovery goes well he will be able to actually use his elbow again almost like a normal person!

Here is a picture where he is just recovering in the post-op area. Normally they don't allow family back in this area, but Dan gets special treatment - he's VIP.

So we are home now after a long day at St. Joseph's. Daniel has a huge dressing around his elbow. The tissue will drain and we were told to expect a lot of blood. With a procedure like this where you chip and hammer away actual bone there's a lot of bleeding since that's where blood is made - in yer bones ya' know? So a couple of days with this dressing, then there are drainage tubes that Dr. C. will remove. In less than two weeks she will remove his stitches and then we hope the healing will be far along. 

Starting tomorrow we will have him moving his elbow as much as we can. A little at first, then more as his pain and discomfort drops. We have a CPM machine to help bend his elbow slowly, but we also plan to assign as many activities as we can once he is more himself. For tonight he can sleep and rest up. 

It's super important to get his elbow moving as much as we can get away with. It might be painful at first, but Daniel is quite an awesome fellow. If there's one thing we've learned through all his surgeries and the painful recovery as a burn survivor it is how tough he is! There's also a drug (indomethacin) we will give for several weeks that is reported to help keep the HO from returning. The real therapy and movement begins tomorrow!

Burn-Aversary & Psych Visit - Happy Dan

Today: January 25, 2018 marks Daniel's 1 year anniversary since his accident. We celebrated not by lighting a cake 🎇(or having anything to do with fire), but instead by visiting his orthopedic doctor - Dr. S. We reviewed what can be done for his elbows.

Here's two photos of Daniel today on his burn-adversary while on his way to see Dr. S.

His face looks so much better!

Outside the hospital with the mama!

[If you've followed along in this blog you know Daniel's elbows don't bend due to heterotopic ossification - bone growing into his elbows as a result of the tragic burn. This orthopedic surgeon may be able to perform surgery to get some movement back in Daniel's elbows.]

The first step is to get a CTSCAN to get a detailed view of what's going on inside his arm. We will focus first on his right elbow that is completely locked. His original skin-grafting surgeon Dr. W. may also need to perform contracture surgery to allow his freed-up elbows to work again. Depending on how that procedure goes we may continue and perform surgery to his left elbow in several months.

Issues with removing the unwanted bone from his elbow joint include the fact that the ulnar nerve (yer funny bone) runs through the joint. The unwanted bone has grown to form a tunnel around that nerve. Chipping the bone away could damage or sever the nerve causing a loss of some finger/hand control and senses in his hand. This procedure is not a simple operation, but something this surgeon has performed - we have confidence in moving forward - at least to the point of learning what the CTSCAN reveals.

At the same time we think a contracture surgery will also need to be performed to allow his elbow to move again. That's where Dr. W. comes in. He and Dr. S. work together closely so they will make a great team to solve our son's problems.

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Now here's a report from our recent visit with Daniel's psychiatrist!
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New and improved - Happy Dan!   Photos of Dan in December:

Dan  (shortly after laser face therapy) and Amanda

Dan and mom stretching his neck - Chaka supervising!

It had been over a year since Daniel had met with his psychiatrist. We've been working with her for over ten years so she knows Daniel, but doesn't see him more than a few times per year. In the past our visits have been somewhat tense (sometimes leading to behaviors) if we bring Dan as he doesn't really enjoy being in most doctors' offices when we're just talking - too boring I suppose.

Dawn and I had discussed beforehand what wanted to talk about - mostly that we had observed that he seemed happier than he had been before his burn accident. How is that even possible? Before we could even bring it up, his Dr. noted how "present" he was from the moment she met us in the waiting lobby. She observed that he was making eye contact, seemed calm and just happier in her initial observation too! So it wasn't just us!!

I should mention that Daniel's psychiatrist is originally from Eastern Europe and possesses that certain cold clinical "charm" of professionalism that comes to mind... (but I digress - actually she's very kind and awesome!)

Frau Farbissina 

Dr. S (psychiatrist) is usually very serious and down-to-business and let's face it - we are there because Daniel has behaviors, not because he's a sweet cherub all the time. Anyhow, Daniel remained calm throughout the session, even smiled some. His doctor could not stop gushing about how happy and calm he seemed - it was like she was seeing a completely new person. This same observation is what many people who come across Daniel seem to think now - he seems happier. [Well, not all the time mind you, but generally yes, he is happier].

So why is Daniel so much happier? This was the focus of our conversation in his psychiatrist's office. She gave her own clinical diagnostic perspective which seems to jive with some of the things we had considered already. Here's the list of changes we all thought were contributors:

1. One of the new medications he is taking to control itchy skin (burn victims often report this problem with their newly grafted skin) also has a mild anti-anxiety characteristic to it that may be helping him cope.
2. His weight is higher than ever before such that he's now in the normal range for BMI. Daniel is at a healthy weight and he seems to enjoy eating every bite on his plate. (It didn't used to be that way!)
3. He's no longer in the hospital - That would make anyone joyously happy!!  

A new idea that she postulated (and seems fascinating to us) is that this traumatic burn assault on his nervous system awakened some parts of his brain that may have been untapped before. She repeated a few times that maybe this event caused a reboot/reset of his cognitive brain functions. There's some interesting reasons for this to be so.

• Daniel has had to learn how to use his non-dominant hand for many tasks including dressing and eating.
• The burn injury - Such an assault on his nerves from the painful experience of the burn may have punched through whatever walls autism has imposed on his central nervous system. 
• We know there's a brain-gut connection with autism - maybe his digestive system has healed while he was on a feeding tube for those six weeks or so. Plus he's eating really well.

There are all kinds of scars left on a burn victim. There's the obvious physical scar (sometimes disfigurement) that heals and fades over time. Sometimes you can't even see where one was burned after a few years. There are other types of scars - the emotional ones. These are just as valid and painful as the scars on one's skin. Some folks I have talked to have PTSD from their tragic accident.

With Daniel we haven't really seen those emotional scars surface. I've said before that Daniel has been in some kind of therapy his entire life. He only knows 'that'. We think that's why he did so well in the hospital setting. His psychiatrist read some notes from when she spoke with hospital staff during his stay. They reported that he didn't express a lot of pain, that he was cooperative and a pleasure to work with. We saw very few behaviors while he was there - mostly towards the end when he was just DONE with being stuck in his room and totally bored.

There's only a few instances where Daniel expressed some fear or concern about the stove/fire where the accident happened in our kitchen. I don't believe he shows signs now of PTSD or that he has any real deep emotional scars from his accident. I've talked with burn victims who seem to live and deal with those scars every day. They have extra stuff to deal with; sometimes suffering deeply from issues with self-confidence - do I look weird in public because of my burn scars? I have to wear this compression garment all the time! Why are people staring at me? - Stuff that one who has never been burned have to deal with on a daily basis. I think they may not be as happy in their lives as before their accident. For them I hope they can move forward and not be brought down by their scars.

To the contrary we have our new and improved Happy Dan in our lives. It's kind of wonderful!

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While we may never fully understand what's making Dan feel happier, we are delighted it happened!

There are still many milestones to tackle ahead of us with Daniel. On the plate for this year is an operation to get this elbows unlocked from heterotopic ossification. His "burn-aversary" is coming up at the end of this month. On that date we have a consultation meeting with his orthopedic surgeon to discuss whether Daniel is ready (metabolism and bone growth settled down enough) to perform this operation. If we can get some (any) movement back in his elbows, his life and independence will become so much better.

One thing I believe is that Happy Dan is here to stay. Any improvements we can make in his life will enhance his outcomes so we intend to pursue them as we always have.

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!