Sunday, August 4, 2013

Maybe we start by sharing our experience.

Yesterday we made no plans and I didn't clean or catch up on all the things we typically do on the weekend, instead we just spent time together. We watched a little TV and Wyatt wanted to watch (or listen) as the rest of us played Mario Brothers on the Wii. He laughed when I would scream each time my character fell into a hole and lost a life (this game is stressful!). Or when Bryan would have his character pick up my character to carry it around the game as I would order him to put me down repeatedly. Or when Jilly just aimlessly floated around in a bubble because she didn't want her character to lose a life, and she would get upset when we popped her bubble by accident. It was nice to just act silly and play, but I really missed having an amped up boy playing with us. He used to love when we would all play this game together.

Medically, not a lot has changed since I updated. He's still breathing. He has surprised us in that regard, to be honest. It's his body, his terms! His body, though visibly tired from the increased work load that breathing on his own causes, has found some kind of balance for the moment. He may have a hard time speaking and his body moves as if it's underwater, but he's coherent. That's something else he likes to surprise people with. Just when you think everything has caught up to him he somehow will pull out a witty or surprising comment. Or begin playing a game of tag. Or we see him smile when he hears something funny on TV or in conversation. He's always listening. Super sonic hearing seems to be one of his powers. That, and super selective hearing. He's always thinking. Perhaps, when in doubt, SuperWy combats his frenemies with the 958th game of tag in a day. :) He's still in there.

We increased his Fentanyl and Methadone doses again this last week. The risk associated with increasing these meds leave us holding our breath a bit initially. I could feel myself hesitate a little when approving the changes these last few times. But even though it's hard for me, it's necessary to keep him as comfortable as we can. 

I did the math the other night and converted his Fentanyl doses (continuous infusion and button pushes) from milliliters (ml's) to micrograms (mcg's), adding up how many mcg's he receives per day. It was stunning. I should know better than to do these things to myself.

But, extreme doses or not, we will continue to keep moving forward, following his lead and, though it's not always easy, doing our best to keep him comfortable. 

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Thank you, friends, for sharing my blog post about drug shortages. While it may not be in the same way as our family experiences, these shortages do have the potential to affect anyone anywhere in the country that receives or needs medical care...your own children, spouses, parents, siblings, families, friends or loved ones. 

I'm sure my little blog post will not change the world's view, or stop the hottest new trend in its tracks. But maybe it could reach someone to make them think twice, or even decide against, getting that IV cocktail for a quick energy boost, or to ever so slightly enhance their beauty for a photo shoot, or to ease a hangover the next morning. And in turn, possibly a patient in actual need of those nutrients will receive them a little sooner.  

In an ideal world that's how it would work, right? 

I know...it may not happen just like that. But I would like to hope that most who use this trend for the purposes of energy, beauty and/or a cure for a night of partying aren't even aware of the shortages. Or that they could be using what little supply is available in the country when individuals that truly need it to nourish their bodies are going without. It's a hard truth. But one that needs to be faced. 

Something does need to change, and maybe it starts by sharing our experience. That's something we can do. Feel free to continue sharing our family's experience by linking to the blog post and spreading the word.
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