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.