We now have a flagged message for treatment in the emergency room and with the local EMS, if and I hope it never happens again, I have another spasm that is not controllable at home, they will know what to do for me. The biggest issue for me is that besides muscle relaxants I was getting a lot of narcotics that suppress my own bodies desire to breath on top of the fact it is working with one lung to succeed. Now we have a plan in place, that I hope will work.
I had an incident after the airport nightmare on Friday. I ended up doing to much walking and yes my luggage had wheels but it was still effort to pull. By the time it was all said and done, I was in spasm but we caught it early followed the protocol and where able to get it down. I ended up really tired and sore, nothing a couple does of sleep will not fix, LOL.
It is hard when you have something rare to get good care, it really comes down to being pushy and keep looking for answers. I have accepted that I will get blocks OK, not the end of the world. Knowing that doesn't mean I will not keep searching for answers that carry a lower risk factor than repeated neurectomies.
Later this week, I have a consult with a general surgeon we are all kind of on the fence about doing a port. There are risks to getting one, and risks to not having one, and really no clear answer either way. You have to love it when one doc says ask this doc and that one sends you back to the other. At least the NP offered the most advice.
More on that and the crazy life and times of Jenn
My son :-)