Time in the hospital moves at a different speed. It's a completely different plain of reality. When you don't go outside for days and are awaken hourly by beeping machines: you're whole biological clock is skewed.
We've been extremely fortunate that in Mr's 7 years, this is our 2nd hospital stay. I don't have anything else to compare it to but I do know that there has to be a better way.
What it feels like it's too many cooks in the kitchen. Teams of doctors, made up of medical students and specialists are all involved in the care of Mr. It's a great concept in theory however the application is way to jumbled leaving us with no faith and frustrated.
Most of the time it feels like no one has common sense. I ask questions and get different answers. When I prove a point, they come up with something else.
In the end they have the power and I've been reduced to "just get it done". I think this is what they are counting on.
There has to be something else, a patient centered approach where doctors actually listen and realize that the expert of the child is in fact
the parent.
I understand that the medical field has to use data from the "in most cases" scenario but for a child like Mr. He isn't "most cases".
But we are left at their mercy. For three weeks we have been here and still have no idea when we can go home. Our choices are limited. Do we leave and go someplace else and start the whole process all over? Do i cause such a fit that we are penalized and put at the bottom of the list?
My resources are taxed and my emotional compass is broken. I've never felt so powerless, so small.
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