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.