Just joining in? Start with Part 1.
Then all of a sudden, after days of improvement, she was in the hospital again. Doctors go on and off duty all the time and the transition is smooth. In this case, a doctor going on vacation led up to a mix-up at the pharmacy and the one medication keeping ammonia levels stable, was reduced by 2/3. Whose fault it is in actuality, I don't know, and at this point in time, it doesn't matter. One evening, Dad left the hospital, she was talking and responisve, and when he came back the next morning, she wasn't.
After consulting with another team of doctors at yet another hospital, the last resort was quickly reached: trying dialysis to see if that would "jump start" her kidneys which had not produced any urine in 2-3 days. If dialyis would work, they could try it over the next few days to remove fluid and poisons.
Except it didn't work. Her blood pressure bottomed out and dialysis was stopped 45 minutes after starting. Her doctors gave her 24-72 hours after that, and so we packed up again. Visiting my mother's bedside at this hospital was difficult. It was as if they went out of their way to make sure you were uncomfortable. The one folding chair in the room discouraged visitors as did the locked doors at the ward entrance. The only means of admittance would be by calling the nurses' station, and then they rarely answered that phone. Brian and Joshua stayed in the waiting room because small children were not allowed.
I was able to talk to her a little as she drifted in and out. She talked to me. I told her I'd had a short night because we'd stayed up too late watching TV and then the baby got up wanting to eat. She tried to laugh and said, "that happens". Then she recognized her brother standing behind me and said, "I didn't see you standing there," which is funny. He's 6'5" and built broad. He's a big dude. When she did recognize her brother, I watched her blood pressure climb higher than I'd seen it all day. He was having a healing affect on her. Oh, those Ferris women love their sons and brothers.
"You know I love you, right?" I would say. "Mama, you know I love you."
Hospice. The next check point on the list. It seemed evident to everyone she was not getting better, and would not be getting better. Dad had already been in contact with the hospice people, or at least, they had been in contact with him. It seemed the logical next step. But before we would transfer her to hospice care, the family spoke with the kidney doctor about trying dialysis one more time. She had been on medication to help elevate her blood pressure for a few days, and the hope was she would tolerate dialysis better. I guess we wanted to make sure every t had been crossed and every i dotted, to satisfy ourselves that absolutely everything had been done. My impression from the nephrologist was he believed this would be a futile effort done only to satisfy the family. He no more believed this would help her than he believed in the man in the moon. Yes, she had kidney issues, but her main problem was the liver. It was the malfunctioning of the liver that was causing the renal failure. And the problem with the liver was only going to worsen no matter what happened with the kidneys. "This is end stage liver disease."
On Friday, dialysis had failed again. There was nothing more medical science could offer. We had come to the difficult decision to either let nature take its course under hospice care or to let nature take its course at the hospital, continuing with fluid and medications. But nature was going to take its course.
So on that afternoon, Dad, Sam and I had a meeting at the house to discuss the options. Dad wanted to make sure we both understood what she would and would not be getting while under hospice care. Standing in my parent's kitchen, we discussed it. Staying in the hospital, they would continue to pump her full of fluids, which the kidneys could not and would not process out, and antibiotics, that were not doing one thing to alleviate a total blood infection. At this point, she had not passed urine in 6 days. In hospice care, we would have complete freedom to come and go with no restrictions on visitors. It would be quiet with very little medical interference. She would no longer be receiving any medication except what was needed for pain. No more central or arterial lines, IVs or antiobiotics. No food. No fluids. No more monitors. We agreed to transfer her to hospice care. Dad went on to the hospital, I fed the baby, and we picked up lunch and met him there.
Except Dad was not quite as ready to let her go as he was at the house. Hospice meant it was over. He just wanted one more day in the hospital before giving up. He knew there wasn't anything more the hospital was going to be able to do for her, and it wasn't that he really wanted to keep her in the hospital. He just didn't want her to go to hospice. I can't say I blame him. Thirty-five years is a long time. He asked the doctor for just one more day in the ICU until Saturday when he would be ready to move forward.
Mom made it through another night and greeted the world again on Saturday. After some serious jerking around, hospice personnel finally showed up to begin the paperwork to get her transferred to that service. Dad, Sam and I sat there with the hospice nurse and watched him sign papers and I thumbed through their book. It was like a manual for death. It was informative and yet, difficult to read. I couldn't focus on what banality the nurse was expressing because I was engrossed in knowing how to tell when the end is near. I became useful when I was able to recall from memory the phone number to the funeral home. The ambulance service was called and I refused to leave until I saw them take her out.
When the EMTs rolled her into the hall on their gurney, I broke down sobbing.