Day 22 - King of Pain?

We've been wondering all through this ordeal if Daniel is in pain or rather if he's registering pain and if that's hurting him in some way. We've known from long before that Daniel seems to show a high tolerance to pain, but he can't tell us exactly on a scale from one to ten where that pain registers.

We have lots of questions with no answers because he can't tell us:

1. Are you in pain? or Does the injury you have now (burn) hurt?
2. Do the medications for pain actually address the pain you're in?
3. Does one kind of pain feel differently from another?
1. If you are in pain what is the sensation? 
2. Does a skin injury like the burns you received feel differently from sore/tired muscles or a headache or tummy ache?
4. Can the staff accurately determine your level of pain?

The last question above is something we understand some. The gold standard used by nursing to determine pain-level in patients is to simply ask on a scale of 1-10. This method can't work when the patient is unable to respond (eg. if in a coma, dementia, non-verbal). Another tool used is the RASS scale - which measures agitation, alertness and other criteria that doesn't really apply to Daniel either since he doesn't respond to complex questions. For elderly patients with delirium there's another tool named PAIN-AD, but I looked at it and a comparison of both PAIN-AD and CPOT and felt PAIN-AD wouldn't help much for Daniel either.

The best practice used my the medical community for a patient like Daniel then is to rely on what's called CPOT. That's the Critical-care Pain Observation Tool. This tool comes a little closer in that it looks at four criteria on a scale to come up with an overall value for a patient's pain level:

• Vocalization - talking, sighing, moaning
• Facial Expression - relaxed/neutral, tense, grimacing
• Body Movement - absence of movements, protection, restlessness
• Muscle Tension - relaxed, tense/rigid, very tense or rigid

The CPOT measurement doesn't work well for Daniel (in my opinion) because he has never expressed pain in the ways other people do (before this injury or during it):

• pain vocalizations - beyond the surprise at the moment he is hurt he doesn't whine or moan.
• he doesn't seem to make facial expressions when in pain (like you or I might grimace or have our eyes wide open or have tears). He will object to having a tube shoved down his nostril, but I think that it's showing agitation of the act, not a feeling of pain per se. (IMO)

That leaves body movement and muscle tension:

• body movement - he can't move his body that much in his current condition as he's kind of pinned down and very weak.
• muscle tension - this one we can see some - shortly before it comes time for his pain-med dosage we've observed that he will shake and shudder and we don't think this is because he's cold on feverish.

With some more thought I may develop a new scale named the PAS4D (Pain Automation Scale for Daniel) or some other acronym TBD.

Now back to my other unanswerable questions from above...

1. Are you in pain? or Does the injury you have now (burn) hurt? 

I've read some research that explored whether people on the Autism Spectrum or ASD (Autism Spectrum Disorder) have a high threshold to pain as has been suggested - and we think Daniel is this way too. While the research up to this point seems inconclusive the findings seem to reveal that people with ASD may experience pain differently than normal folks - that it can manifest itself in all kinds of ways, but nothing I've read from research answers the question fully.

       2. Do the medications for pain actually address the kind of pain you're in?

There are MANY pain relieving drugs out there. Daniel has been exposed to lots of them throughout his recovery up to this point. I've mentioned many of them throughout this blog. I've also said that burns are really painful. I do believe that Daniel is getting the right kind of pain meds to address the pain he's experiencing from this burn, but is he getting enough if they can't accurately tell using the best practice methods developed for regular (non-autistic) patients?

       3.  Does one kind of pain feel differently from another? 

There's an interesting blog written by someone with ASD and in this post she writes what pain is like for her. I wonder if physical pain for Daniel is the same as this person's? Obviously this person is not Daniel and this writer is at the other end of the autism spectrum in terms of cognitive skills - especially writing. 

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Daniel's off to the tub room for wound care. That's an especially painful experience for burn patients. He's been given a bunch of pain-meds in preparation for it like every day. I hope he's able to rest through it or drift in his own world of autism. Maybe he's pondering the words to this Police song King of Pain:

There's a little black spot on the sun today
It's the same old thing as yesterday
There's a black hat caught in a high tree top
There's a flag pole rag and the wind won't stop

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain...

There's a little black spot on the sun today
That's my soul up there.
It's the same old thing as yesterday
That's my soul up there.
There's a black hat caught in a high tree top
That's my soul up there.
There's a flag pole rag and the wind won't stop
That's my soul up there.

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain...

There's a fossil that's trapped in a high cliff wall
That's my soul up there.
There's a dead salmon frozen in a waterfall
That's my soul up there.
There's a blue whale beached by a springtime's ebb
That's my soul up there.
There's a butterfly trapped in a spider's web
That's my soul up there.

I've stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain...

There's a king on a throne with his eyes torn out
There's a blind man looking for a shadow of doubt
There's a rich man sleeping on a golden bed
There's a skeleton choking on a crust of bread

King of pain...

There's a red fox torn by a huntsman's pack
That's my soul up there.
There's a black-winged gull with a broken back
That's my soul up there.

There's a little black spot on the sun today.
It's the same old thing as yesterday,

I've stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain.

King of pain [3x]

I'll always be king of pain... [4x and fading]

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The one thing about pain or discomfort for Daniel that we as his parents understand and have observed in him time and again is how he responds to it in the moment:

• Sickness - When he feels ill he shuts down and sleeps it off. He doesn't whine, moan or complain. He pulls a blanket over his head, shuts off from the world and gets better.
• Internal pain - When Daniel has a specific pain like a tummy or tooth ache he puts our hand on it and we understand what he means. But what if he hurts all over, everywhere, and his hands are fixed out in airplane form as they are now? He can't show us.
• Skin abrasion - When Daniel has injured himself like a scrape (which is rare) he lets us know there's something wrong so we can fix it. He will take our hand and put it on the injured part of him. He leaves is to us to figure out how to make it better. This is something he can't do right now.

In all the ways he might be experiencing discomfort or pain the one thing he has learned to do is to just sleep it off, shutdown, and escape from the world. This is what I explained to the team as his main coping mechanism when not feeling well. When that fails him he tends to lash out with a behavior although that's just not an option available to him in his current state.

During morning rounds today we discussed the level of pain control he's on versus average patients (if there's such a thing). The team did explain that he's far below the level of pain meds they would have other patients on and they were basing this on the CPOT paradigm explained above. I pointed out that I have concerns that that tool may not fully work for Daniel. While I agree with the thinking that it is a good long-term goal to get the body off the pain meds, I suggested that it may be hindering his ability to cope with the pain minute to minute. My insistence seems to have paid off I think for the time being...

What Team Daniel came up after rounds is to give Daniel a little recess time alone, covered up and warm and in a darkened room with a little space from distractions for an hour. The doctors has also reasoned (I may have had a somewhat forceful hand in it) that maybe he's not coughing enough because he may be in too much pain in his chest. I'm hoping this combination of Daniel time + pain med boost + lay on side helps him to clear his lungs while he have him positioned on his right side letting gravity help with the left-lung gunk. As I sit with him he's coughing deeply again about once every few minutes so it's a good sign if he keeps it up.
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Later today he's scheduled to be observed by the ST to check for swallowing, but I'm not sure if that will happen today as the afternoon is wearing away.

ST came by with ice chips - she said he looked much better than the first time she observed him 5 days ago. Daniel was pretty wiped out (see above), but once I slipped an ice chip in his mouth he seemed to brighten up, begin to move his tongue around and crunch the ice with his chompers. He did do some swallowing. It looked like it was an effort to do so, but he didn't gag or spit it out. She encouraged us to keep giving him SMALL amounts of ice chips to practice swallowing and getting him ready for the next step towards eating and drinking again. Soon she would like to do a barium swallowing test, but the timing may conflict with his upcoming surgery so we will have to see how that all plays out.

Did I mention surgery? It looks like he may be queued up to do his second surgery for autografting for his chin and throat early next week. That could change, but he's healing nicely so maybe soon.

Today they removed some of his staples on his arms which suggests he's healing well along his arms and will be getting more staples out each day during wound care.

I think that's all I've got for today.