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.