Creating visible change. Connecting the dots of life. Communicating to build bridges.
Let’s hear it for the Stomp Brigade! It’s almost time and your captain is getting revved up. We are bringin’ it for our little Reese!
Check out our awesome shirts. If you don’t have one yet, we will have it ready for you Sat morning 9am at the event site.
Visit our team site if you’re interested in joining us this Saturday.
http://eftx.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=6398
I have fought using their terminology, but I find the more I use it here the more they listen.
Found an explanation for her surgery on Web MD and I think it actually does a really good job of keeping it simple. The temporal lobe resection is the craniotomy or “crani” surgery we came in for; the one that can eliminate her seizures. We just have to wait a little longer now to reach that stage.
As the article mentions, we needed more data to pinpoint the source of the problem. We have that answer now, but it’s been a little more of an ordeal to get it than we had planned.
Web MD is a good resource if you have questions. Please read this and I’m always happy to try and answer specific questions. I partly avoid the gory details for some who prefer not to know it all, and partly so I don’t have to admit all that we are putting her through.
http://www.m.webmd.com/a-to-z-guides/temporal-lobe-resection
We have curls again! Grids and blood gone, staples in. They said she did wonderfully and we are stable. Have to watch the bleeding for a few days. She is getting pumped full of vitamins and things to help boost her system. Now we just have to wait to see how she heals.
There is no amount of space big enough to hold our fears right now. They just took Reese back for emergency surgery to remove the blood pooling outside her brain again. They feel she may have a bigger issue that needs to be looked at so tomorrow’s epilepsy surgery is postponed.
This is not a good thing for Reese because the timing of all this was orchestrated perfectly to avoid unnecessary seizures.
We are trying to hold on to our trust in the doctors and in our hearts where we know she is such a fighter she is going to beat all this.
She is most definitely on a VIP track around here. Our doctors have a plan and we are doing all we can to challenge them, question them, and look out for her needs to make sure nothing is missed.
They will stop the bleeding, take out the grids and close her up to allow her brain to rest and heal. There is no way of knowing if anything has happened to her brain right now. The seizure activity has been very active, they believe that is due in part to the extra blood and the pressure. She just needs to rest and the time will allow her brain to get settled. Having the grids in always had a risk of upsetting the brain, there was just no way of knowing how much. At least she won’t have to deal with the cords coming out of her skull anymore. That is done, forever.
We have been so prepared and strong through this whole thing but this was not a scenario we could bring ourselves to prepare for I guess. It’s heart breaking. We are with our parents and we will let you know when there is more to share.
I suspect 3-4 hours for this operation and then we will be back in ICU.
Please be patient if you don’t hear from us. This place is a black hole, time is lost and you get lost in the absence of the world. It’s been so unreal, this whole ordeal is really unfathomable. Even in the moment, I stand here wondering if it’s really happening.
We love our Reesey.
Hypothesis:
We have, as a society, such a completely disordered, distorted perception of female bodies that the vast majority of people are incapable of recognising what “overweight” actually looks like on a woman, let alone “healthy”. As such, we’re now at a point where women are not only…
Our little warrior says good night from the ICU. Sitting up for first time today. Everything is stable and we are looking forward to lots of talks with our doctors tomorrow to prep for Tuesday’s surgery. #epilepsywarrior
OK With Change