Almost lost sister again...but she is a fighter!!!
Last Saturday I got the call.....my sister was on a ventilator in ICU.
This happened after what everyone thought would be a simple surgery (thoracotomy). She had gone in for an operation to drain fluid from around her lungs (her breast cancer has spread throughout her lungs and she had a pneumothorax and during a procedure to fix that a hole didn't heal).
After the operation she could not breathe on her own so they had to put her on a ventilator. They thought she would only need it for 6-8 hours. After 24 hours tried to take her off and she went into shock. So, after another 24 hours she was able to breathe on her own. The family was jubilant because they took the tube out of her throat and she was alert and coherent. I sent them for a much needed break and dinner while I sat with my sister. I had already been in the ICU room since 8 PM Saturday. It was now 6:30 on Monday. I only left the room to go to the bathroom.
After the family left, the doctor came by and asked to talk to me outside. I am the one that makes the health care decisions for my sister. He told me that we needed to discuss what the next step would be and it had to be done quickly. He said that if things didn't improve and she couldn't breathe on her own, they would put a tube directly into her throat (trachea) and she would have to be moved to a long term care facility. In other words, we had to decide if she was going to live on machines for the rest of her life.
I went back and sat down with my sister and explained to her what the doctor said. She could barely talk but her first question is "what happened .... I was just supposed to have a simple procedure". I had to explain that the cancer had spread so much that her lungs and heart were working harder than normal and would not last very long and that she might have to go back on a machine.
We already knew that she didn't want to be kept alive on machines if she was vegetative. But she's not! She's very aware and very coherent ... which makes it worse. They had to keep her hands tied down because she kept reaching up to pull out the tubes. I asked her if that is the way she wanted to be kept alive. She asked me what I would do. I said I would want to die with dignity. She wanted time to think about it, but I was afraid she would stop breathing and everyone would come running back in and intubate her.
When the family came back I had to take them into a conference room (her twin sister, our brother and one of her daughters were there). It was harder to tell them than it was to tell my sister because she and I had discussed it two years ago when she had her heart attack, and she knew it was coming soon due to the cancer. We all agreed that we would keep our emotions in check and let her explain to us what she wanted.
She called the nurse in to explain to us what would happen if she quit breathing on her own. The nurse explained that she was a full code ... in other words, do everything possible to keep her alive. She then decided to change her directive to a DNR, or comfort care status. After she made that decision I told the family that I will not sit there and watch her die. I had worked hard to get her off the machines and now my work was done. I went to my hotel and had a complete breakdown. My daughter and friend drove for 10 straight hours to come give me support.
They kept her in ICU for another day and then put her on a feeding tube. That only lasted for a day because she wasn't absorbing the food very well. On Wednesday they moved her to the floor where they focus on comfort of the patient. They tested her swallowing and she was fine for "honey consistency" food. The only thing she has actually gotten down is apple juice and cream of wheat. The apple juice is the consistency of honey ... but I forgot how they did that.
She is constantly coughing and she thought she had pneumonia....but it's the cancer. She is on pain patches and can be given morphine every hour if she requests it. Sometimes she makes it 3-4 hours and a couple of times she has gone over 7 hours. They have also given her breathing treatments to help the lungs.
I stayed with her another 24 hours straight to give the rest of the family a break and because I think this is the last time I'll see her alive. We didn't talk much because she can barely breathe, but we held hands a lot. We met with Hospice yesterday and it will be a godsend if they truly do everything they say they'll do. If she continues to be stable, they will bring her home on Monday or Tuesday.
My other sister, her twin, has remodeled her garage to accommodate Bess during her final days (big enough for a hospital bed and another bed for anyone who is on watch. The doctors say it could be anytime, or it could be weeks.
Bess told me to go home and get some rest and that she hoped she wouldn't see me very soon. She has kept her sense of humor.
I know all of you have sent prayers in the past, and a few of you have always included you in her prayers and I know that's what helped her get off the ventilator. Thank you from the bottom of my heart.
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Originally Posted by SassyLady
