I wish I could say that things are getting better, but they really aren't. I feel so trapped. Trapped because I don't feel safe here and yet we really don't have anywhere else that we can go. There are only 4 polytrauma centers in the US (and most of the people here have come from one of those four because they were so bad). Yes, I know we can go to the private sector, but Kevin shouldn't be in the cold weather (and this has been verified by many docs since first mentioned to me) and most of the best neuro hospitals are in the northeast. Too cold.
I do plan to call two renowned neurosurgeons tomorrow morning and see if anyone is willing to come here and help us out. That's the only thing I know to do for sure at this point.
To be honest, I am not really up to writing much tonight because there is just so much swirling around in my head. I got into a huge fight with our surgeon today and on top of that, I found out that Kevin really isn't stable enough to be back in his room - yet ICU won't take him and oddly enough - the neurosurgery team refused to be his primary team because they don't feel he is sick enough. Pretty funny considering he is leaking CSF and blood from his ear (which btw, leaves an opening for meningitis), his head is swelled again, he needed blood and he has a small hemorrhage in his brain from surgery. Not sick at all, right?
Oh, and did I mention that nobody actually did call the company rep for the shunt that nobody knows how to work? Yeah. They decided to just keep trying to figure it out all weekend, taking numerous x-rays in the hopes that the light will turn on and then if it doesn't - we'll just call tomorrow. Assuming they can get someone, right? Hmmm. It's now been 3 days - tomorrow makes 4 - since they knew they couldn't figure out how to work it. But that's ok. He's not really sick.
I feel so much despair. And so does Kevin. He still cries every time he touches his head. He also cries every time someone comes in to do more tests or to draw blood or to take more x-rays or any of the numerous new things that are necessary. And to be frank, it's getting harder and harder for me to fake like things are going to be all right when I am just not so sure they will be...
First 2 from the Nov kit!
4 years ago