Every time I sit down to work on this post, something else changes.
A long time ago, when my grandfather was taking care of my grandmother when she was in the hospital, he used to come home and say that she had good days and bad days. I was too young to understand what that meant. I think I do now. Some days mom looks and sounds like hell and sleeps a lot, other days she's awake and glad to have company.
I'm all kinds of messed up right now. My short term memory is still hosed from not sleeping well and the general stress of everything going on. So, I'm going to try to sequence things as best I can. Sitting in my mom's hospital room as I type this makes it easier.
Forgetting my adderall didn't help.
Lyssa flew in earlier this week after mom's near-miss. She went from the airport right to the hospital to see my mom. She's been with me when visiting the hospital and running errands every day. She flew out this morning. When it's time, I'll call her.
If you've been following my blog long enough to remember posts about my grandfather, he almost died quite a few times toward the end. And he kept bouncing back. Never back to where he'd been before, mind you. He was tough as John Wayne's old boots and determined as a mountain. My mom's the same way; she fights like a wildcat (for pissed off Bengal tiger values of "wildcat") and has steel alloy for bones. For how long, I don't know and can't say.
The bowel obstruction is still there. It's not as acute as before, but it hasn't gone away, either.
A day or two ago they implanted a new drainage tube into her abdomen. Unfortunately, the fluid is accumulating so rapidly that it's running out of the drainage tube on its own, soaking through the dressings, soaking her hospital gown, and occasionally dripping onto the floor. They use a Plurex kit on the drain every day, but that's not enough. I think she needs to be drained two or three times a day. But what do I know, it was difficult enough just getting a nurse in to do the drainage.
We still have a few Plurex kits at home. I need to take inventory and see how many there are. I'm really worried about the latest round of supply chain problems making them hard to get.
The fluid is building up faster and faster. By the time I got to the hospital she'd been drained twice that morning. Some of that is due to cancer cells doing things they're not supposed to do, like secrete fluid. Some of this is due to the irritation the tumors are causing inside her abdomen. When the body senses irritation it assumes that things are rubbing together that shouldn't be, and produces fluid to lubricate the things, and if it's bad enough to cause the things to separate and stay separate, kind of like packing them in cloth to keep them from scratching each other. Unfortunately, there's no feedback mechanism to stop fluid production which is part of the problem.
Tuesday night mom started throwing up again (seems like that happens about twice a day), and they put the nasogastic tube back in to keep her stomach empty. Mom keeps saying that the fluid is red because the throat spray they gave her for the pain (NG tubes hurt because they rub constantly against tissues that are never supposed to be touched by anything), but she's not using nearly enough to color entire liters of fluid dark red. Additionally, she was throwing up some stuff that is very dark red, almost black, and looks like coffee grounds. That's usually indicative of stomach bleeding. They figure that the fluid is building up in her abdomen and seeping into her stomach, so they're trying to keep the pressure down as much as possible.
As I write this on Thursday, 7 October 2021 from the hospital, her nasogastric tube isn't really pulling anything out now. I think she's too dehydrated.
The decision was made to put mom on TPN - total parenteral nutrition. Full scale intravenous feeding, bags changed twice a day. Nothing by mouth. One of my relatives who works as a nurse in a hospital calls the bags of off-white liquid banana bags, because the liquid is also kind of yellowish and includes potassium, magnesium, and other electrolytes in addition to actual nutrients. Mom keeps calling it breast milk, which cracks the nurses up. The TPN rig is plugged right into her infusaport, because TPN requires a central line. Interestingly, TPN doesn't equate to hydration.
I'm pretty sure that she'll never eat normally again.
The nurses are having a difficult time keeping other IV lines going in mom. Here veins aren't cooperating anymore. The first one, in her left arm, took four tries before it went in, and a day later it refused to flow and had to be removed. I don't know what would clog an IV catheter so rapidly, especialy because they're giving her regular subcutaneous injections of sodium heparin to prevent blood clots (as evidenced by the constellation of bruised injection sites on both arms and legs). I think the reason is that her veins are constricting or collapsing after a while, so they have to try again and again in different sites. As I type this, she lost yet another IV. I'm not sure if they're clogging, or if her veins are shrivelling up so much that the catheters get cut off. I'm working on this on the afternoon of 7 October 2021, while the IV team uses an ultrasound machine to locate a vein someplace they can drop a catheter.
I really hope they don't have to do a cut down.
Mom's still on constant IV antibiotics. They're pretty sure that she has an infection somewhere. Looking at her daily report (they call it My Daily Plan of Care) which has, among other things, the results of her latest round of bloodwork. She's stuck in bed most of the time so her muscles are atrophying and her blood chemistry reflets that. Her hemoglobin and platlet counts are low. Could be due to the last round of chemo, could be due to the cancer, could be bleeding someplace, could be a combination of other factors (which seems more likely - the inner workings of the body are densely, sometimes weirdly tied together).
If you've been following my blog long enough to remember posts about my grandfather, he almost died quite a few times toward the end of his life. And he kept bouncing back. Never back to where he'd been before, mind you. He was tough as John Wayne's old boots and determined as a mountain. My mom's the same way; she fights like a wildcat (for pissed off Bengal tiger values of "wildcat") and has steel alloy for bones.
The doctors are now talking about palliative care. We're supposed to talk to the palliative team tomorrow morning.
Mom really wants to go home. I think it might be possible, but I don't know for how long it might be.
We spent the morning doing paperwork.
We don't know what's going to happen, or when. I can only write about what I observe; mom and Lyssa have asked me to keep as much speculation as possible out of these posts, because it won't help anyone. Which is ultimately why mom asked me to write these posts - so that there's a record of what she goes through that might help other people.
Suffice it to say, the official diagnosis is "not good." Mom's not going to get strong enough to start chemo again. The tumors in her abdomen are winning. She's not going to get any better than she is now. She wants the NG tube out of her stomach and to go home, because I think she wants to die at home.
I went out yesterday afternoon to get her a few jigsaw puzzles to put together and books to read, because hospitals tend to be kind of boring, especially in the evenings.