I said I’d expound a little on what they said in my last thoracic consultation that was a little disconcerting so, here it is…
I knew about the “Thoracotomy” or at least thought I did but there were several pieces that I didn’t know. I’ll have “chest tubes” hanging out of my incision draining into some little boxes…then when you’re healed enough, they just “pull them out” through the incision. Definitely something to look forward to…*eyes roll*. Then I found out they will be doing an epidural that will remain in place for some undetermined amount of time with pain meds being pumped into the epidural space. The pain relief idea sounds good, BUT last time they so much as did a lumbar puncture, I had the horrible spinal headache complication and the EDS puts me at very high risk for that to happen again. It’s just common with the weak connective tissue. So I already let them know about the blood patch and they might have to do that since it worked for me last time. I’ll of course have heart monitors on, but didn’t know I’d also have a catheter as well. Never had that and am not looking forward to it. I think they’ll wait until I’m knocked out before they do that though. I didn’t know that the ongoing pain from a thoracotomy can be so prolonged either. They may still have to cut through my ribs and remove a part which I didn’t like the sound of and hoped we’d avoid. And that isn’t even beginning to get into the airway repair itself. Sounds like lots of bronchoscopies loom in my future as well. They also may have to work down into the lung(s) themselves in order to attempt to support the lower airways as much as possible. I won’t list all the possible things that could happen with that.
I find myself in a sort of surreal moment in time. I never saw a surgery like this happening in my life but I suppose no one ever does. So now I have two days to try to enjoy time with Steven and NOT think about the hellish procedure looming in the no-longer-distant future. I’m also trying to relax, be at peace and visualize a positive outcome. I had distilled my feeling down to four words (in this order): peace, apprehension, curiosity, concern. Overall, I’ve been peaceful about this knowing that it’s the right direction and by process of elimination, the only direction, currently. Apprehension, because they’re going to do a lot of cutting, moving, sewing, tailoring, repairing, reconstructing, poking, prodding and such and I don’t think anyone likes the idea of that. Curiosity, in that there are a lot of unanswered and unanswerable questions that will only be known from trying this and hoping it works well. Concern for Steven and my intentional family while I’m going through this and all the changes it could mean. This has all been made more difficult by some major screwing up by the hotel and causing things a lot more stressful…too long of a story for now but things are definitely not sorted out. *sigh* One thing after another.
My challenge and goal is to get back to that place mentally and emotionally. If I can, I guess I’ll be in a better place because I’m now even more informed about what they’re going to do so there will be less surprises. I don’t like surprises on things like this…I’d rather prepare myself mentally for the worst scenario and then be happy if it isn’t actually that bad. Here’s hoping that’s the case. On to the waiting game through the weekend.