Day 34 - Monday Monday

Today we stood through morning rounds with the Burn Unit Director running the show. She's a great Dr. and I think she's extra fond of our Daniel. Dawn unleashed our newfound concerns since this past weekend to discuss the pain medication level that Daniel is receiving. We think it's too low for his comfort level and wanted to understand what their expectation was for him - as it is he's comfortable unless he moves in the slightest. If we try to get him to do something he seems to get pretty uncomfortable.

There's that fine balance again between being too drugged to participate in healing AND being not-drugged enough such that you stop participating because it hurts to move. We felt that Daniel was just on that edge of being not drugged enough.

Daniel like most burn patients is receiving several meds just for pain and sedation. He's fortunate to have responsible staff administering and tuning his dosages ever since he arrived. There seems to be an ever-changing blend of drugs to address pain and sedation. In Daniel's case the list includes:

• versed - sedation
• precedex - sedation
• oxycodone - pain
• fentanyl - pain
• gabapentin - pain - specifically for stinging skin pain - graft donor sites 
• tylenol - pain
• and new today ketamine - pain/sedation 

Patients respond differently to the cocktail of medication that can be used during recovery. There's different ways to administer these drugs too. When first admitted and for the first few weeks Daniel was on a continuous IV drip of fentanyl and either versed or precedex. More recently he's only been given shots of versed and fentanyl when he's in wound care or during surgery.

I think they started giving him gabapentin when they began autografting from donor sites on his legs. That kind of makes sense because the sensation and appearance of the donor site is like a massive sunburn - we all know what that feels like! Other patients have informed me that the donor sites hurt more than the burn often.

From what I can tell these meds can mess with Dan's BP and heart rate. Too much of one and his pressure may drop or go too high. Also he may not "tolerate the meds well". We've heard that phrase lots during his time here and it can mean different things to different staff. It might mean it effects his vitals or it may also mean that it's not helping with his pain and discomfort.

Yesterday during wound care - that was a hard and painful wound care day because they did his entire body in the tub room. The nurse said he "didn't tolerate the meds well". They used versed and fentanyl and gave him a LOT, but he continued to have moments where he would raise his arms or head up (like he wanted to leave perhaps) or moan. Taking that into consideration for today's wound care they tried a new approach.

Here's a nice happy picture of the sterile tub room 

where all the fun is and patients report that 

they just love it. - NOT!

Today they gave Daniel versed and ketamine for wound care (and oxycodone too I think). The nurse said that he "responded much better". By that he meant that Daniel seemed sedated enough that if there was pain he wasn't bothered by it. From what I had heard and read of ketamine over the years is that it has a reputation for being a type of party drug. I think a user "trips" on it because it blocks specific nerve receptors and can cause a disassociative connection with your body where you "travel" into a "k-hole" and basically float away from reality for awhile. [I think I have the lingo about right here]. Anyway that's what the first few google searches "traveled" me to when I clicked on them. Trippy huh?

I've been trippin' on my own thoughts about autism and the brain-gut link. I may talk more about that later. There's a few things I've explored that involve this little beasty called glutamate and it's role in nerve receptors,  the breakdown of food into energy in the Kreb's cycle (gut) and how pain meds play around with blocking glutamate in pain receptors... To be continued
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I suspect the rest of the day will be low-key and restful for Daniel as he recuperates from wound care and we watch Disney vids together in his room. Me - I went on a run outside while Daniel was in wound care and my legs are aching... I wonder where any of those pain meds are?  👊