Frustated
Today has already been the longest day and it's not even noon. The neurologist put Maegan on a new muscle relaxer to try and get her muscle pain/tension/spasms under control. She said it help her feel rest when she was laying down, but the moment she tried to stand, her legs went crazy all over again.
She has already had a visit from a urologist, a sonogram done on her kidneys, and is scheduled for a cystoscopy at the doctors earliest convenience (either in the next 5 minutes or the next 5 hours). Not knowing an exact time is really causing some unrest for Maegan.
All in all Maegan just isn't resting as well as she needs to be because she is so worried about what is happening next. Frankly, I am too. The doctors seem to want to help but it seems like we are having to fight just to get them to even consider an inpatient transfer to another hospital. I think the doctors understand where we are coming from but it seems as if they want to get her well enough so that I can drive her to a neuromuscular specialist. She is in no condition to try to make it outside of these 4 walls, much less a 3 hour car ride. At least not yet.
After being discharged, the following 24 hours were the worst I have ever seen Maegan struggle through. The medicine didn't help, I couldn't help, and it seemed as if everything that used to bring her comfort was just not adequate anymore. That discharge led to many, many strong emotions about what our time in the hospital is really about. I was never aggressive enough to tell the doctor how I felt about his judgment. To no surprise, we are now doubtful that any doctor (no matter how great their intentions may be) is actually listening to the whole story. Even though we are talking to the doctors about where Maegan needs to go, it just seems like we are having to fight tooth and nail just to make sure she doesn't end up out in the cold again.
Either that or they could just not be telling us everything.
Whichever, it is enough to raise the blood pressure and counteract the very reason why we are here in the first place.
We want- no we need a solution to the problem.
Sorry for venting.
I feel better already.
-Philip
She has already had a visit from a urologist, a sonogram done on her kidneys, and is scheduled for a cystoscopy at the doctors earliest convenience (either in the next 5 minutes or the next 5 hours). Not knowing an exact time is really causing some unrest for Maegan.
All in all Maegan just isn't resting as well as she needs to be because she is so worried about what is happening next. Frankly, I am too. The doctors seem to want to help but it seems like we are having to fight just to get them to even consider an inpatient transfer to another hospital. I think the doctors understand where we are coming from but it seems as if they want to get her well enough so that I can drive her to a neuromuscular specialist. She is in no condition to try to make it outside of these 4 walls, much less a 3 hour car ride. At least not yet.
After being discharged, the following 24 hours were the worst I have ever seen Maegan struggle through. The medicine didn't help, I couldn't help, and it seemed as if everything that used to bring her comfort was just not adequate anymore. That discharge led to many, many strong emotions about what our time in the hospital is really about. I was never aggressive enough to tell the doctor how I felt about his judgment. To no surprise, we are now doubtful that any doctor (no matter how great their intentions may be) is actually listening to the whole story. Even though we are talking to the doctors about where Maegan needs to go, it just seems like we are having to fight tooth and nail just to make sure she doesn't end up out in the cold again.
Either that or they could just not be telling us everything.
Whichever, it is enough to raise the blood pressure and counteract the very reason why we are here in the first place.
We want- no we need a solution to the problem.
Sorry for venting.
I feel better already.
-Philip
posted by p-melt at
10:12 AM
1 Comments:
The pain of not knowing is special in its own way. The difficulty of trusting human doctors is hard in its own way. The passing of time in the hospital is long in its own way.
I'm sorry you are enrolled in the class called, pain.
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