There was a lot of discussion about how to handle Rich’s nutrition as he moved into hospice. Both hospice organizations we worked with don’t offer TPN as part of their services. It’s not part of their philosophy. Hospice is about escorting someone peacefully through the end of life, not extending it.
Because of the emotions involved in all that, our hospice group agreed to step down Rich’s TPN over the course of two weeks. Rich was receiving 2500mL of milkshake intravenous nutrition. We stepped him down to 1800, 1600, 1400, 1200, 1000. And we kept him at 1000mL through February 1.
Ever since Rich left the hospital at the beginning of December, he had horrible edema (swelling) in his feet and lower legs. His calves and thighs were the same diameter. We tried raising his legs and using compression socks. There wasn’t a medication the doctors were willing to use for fear of it causing other issues for Rich with his heart or blood pressure.
On Wednesday, February 1, the hospital bed arrived. That was the last morning that we hooked up Rich’s 1000mL of TPN. It was still an emotional thing for those not dying. I’m not sure that Rich said anything about it himself. I was on the phone with my mother and she started crying, “So now he’s going to starve to death?!”
“No, Mom. He’s going to die of cancer. Because he has cancer. He’s going to die of sepsis. That’s how this works.”
I’ve mentioned before that Rich has had wild fluctuations in his temperature. It would roll between 94 and 107 every day. It was miserable and stressful for all of us.
We hooked up Rich’s last TPN at noon on the 1st. His temp went up to 107.3 at 2:15pm. And ... That was the last time he had a significant fever. He took 1 Tylenol on February 2nd to bring it down from 100.6. All day yesterday (the 4th), his temp was between 96 and 98.
Also, Rich’s feet are back to normal! They look like his feet again. They don’t hurt for us to touch them. I could actually put lotion on them yesterday without it bothering him.
Rich is only getting 500mL of IV fluid a day. No more TPN. And yet, his health has significantly improved. He agreed to the bed and he’s sleeping better. As living people we all assume that we need to “keep Rich alive” as long as we can and that taking things away is giving up on him. But all that protein and sugar in the TPN was literally poisoning Rich because he couldn’t process it anymore. The fluid pooled at his feet and the sugar fed the bacteria for his infections to make them go crazy.
I was in the kitchen this morning and Rich called out to me. I walked in and he said, “I just wondered where you were.” I told him I was making bacon for breakfast and I’d give him some if he wants it. Extra crispy like he likes.
“Ooo, yeah. .... Hey, can I have a piece of toast?”
“Do you want plain toast or cinnamon raisin toast?”
“Ooo. Cinnamon raisin please.”
He ate it all, napped for a bit, and then picked up his phone to try to read messages. Look at him, all not starving to death.
Up next, we’re gonna watch “Blazing Saddles” while we wait for hockey to come on at noon. He also just asked for something else to eat for lunch. I offered strawberries.
"I will have ... one ... strawberry."
He's eaten a whole bowl so far.