O.k before I say what I need to say, I want to make a disclaimer:
I follow politics, I enjoy knowing whats going on in our government and whats happening in the world. HOWEVER, I don't know too many details, I can't necessarily tell you the names of the current laws being proposed, or even the exact person representing them. I decide whom I will vote for based on their ethics and values. When I feel like I have found some one which best represents my point of view..I vote for them. The same goes for the current bills being passed, I think about the bill and how it will effect my family, and do I feel like that bill will be good for my family and those around me. ANYWAY, this little ditty is on health care.
My sister, is disabled. I don't like to state that about her, because to me it has never mattered. But for the purpose of what I need to say, it should be stated. My sister, is disabled. About two weeks ago she became very sick, the care facility she stays in took her to the emergency room. she was admitted with Pneumonia in (what they told us at the time) lungs. By the next morning her left lung had collapsed, her heart rate was in the 150's and she was on the highest amount of oxygen she could be. we rushed to her side. As a family we prayed together, talked with the Doctors about the hardest of decisions, which every one felt at the time could be coming, and watched her her life teeter back and forth between letting go and going home, and fighting hard to stay with us. for any one who has gone through a similar experience, you know there are very few things so draining physically and emotionally as this.
For days she struggled, and then little by little is seemed as if she
might just turn the corner to getting better and having this experience be as a distant memory. Then Saturday happened. Now as I mentioned My sister has outside issues beyond this current illness. One of those issues happens to be epilepsy. So seizures have become a struggle in her life, a part of ours. The thing that made this day so different was the number 2, never in her entire life has she had two in one day..ever. ....until saturday. Since that time the doctors have continued to follow a schedule that would mark a road to recovery except for one problem, SHE IS NOT RECOVERING! They have slowly taken away her oxygen, only to give it back because she struggles off and on, her feeding tubes have been plugged, she couldn't eat. they unplugged it. Then the next day decided it was time for her to eat regular food again, they took her off food of any kind to create an intense hunger so she would want to eat, the problem is that she was so weak that she gagged on the food and choked every time we tried to feed her, back in goes the feeding tube and a scheduled surgery comes for a permanent one.
EXCEPT WAIT! the drs. had told us that at her current state she was too weak to have any kind of surgery...but they pushed ahead anyway, we are so very thankful that she made it through the surgery. She struggled all that day, but they still pushed forward. They took out the tube which was draining the fluid out of her lungs so she could get going home..even though they can see her lung is not only still collapsed but has fluid in it. As soon as the tube was removed they began the talk of discharging her and this is where the even bigger problem comes.
Believe it or not, I have spared you
SO many details in this ordeal, None of her doctors have agreed as to how to treat her or even what is really going on, each day a different story, but they all seem to be ready to let her go. The nurses are shocked at what they see, they care for a young woman in crictical care and don't understand why she would be released. My parents begg for more time only to be told no. My sister's care center will not take her back in her current situation, the hospital won't keep her. The one option in between a hospital and care center refuses to see her needs and take. So now what? Where will they even take her when she is released? how can she even survive with out the IV's and oxygen?
My sisters health care is government health care, with her disabilities that is what she has received her whole life. Now apparently her quality of life is not worth fighting for. Is this where we are headed? I can't tell you how many times the doctors looked me in the face and told me her quality of life is not good enough and we need to consider letting her go. BUT SHE STILL FIGHTS and as long as she still fights who are we to say she can't be given the chance?? If this is what my childrens future holds, I will fight with all I have to make sure they never have to live a life where they are told they are just not worth the fight. Where does it end? what qualifies a "good quality of life"? disabilities? age? sickness? WHAT?
Last night Aubrey had another seizure, she is back on oxygen, her fever keeps spiking and she is in pain, she has sores all over her back side, and with out IV fluids her blood pressure drops to dangerously low rates. But don't worry, the doctors say she is fine..she might even get to go home today.
