Winter and the waxing crescent of the Imbolc Moon

Saturday gratefuls: Kate. Her feeding tube. Tatiana, her cardiologist. Her stable lung disease. Sjogrens. Paul and his breathing help, for stress. The dishwasher. Working. Cottage Pie from Easy Entrees. Kate’s favorite comfort food right now. Kep and Rigel, a little disoriented without Kate at home. Charlie, a little disoriented with Kate at home.

Gratitude for myself. Never thought of that. But, hey! Why not. I’m grateful for me. Wasn’t always. Those drinking years? I was not always my friend. Now though. With a solid paganism at my core, body working, mind filled with years of learning, loving, experiencing. Yeah, I’m not only grateful to be here, but I’m grateful to be me. Good thing, right? Tough to be somebody else.

Kate with a new born Gabe and toddler Ruth, 2008

Kate’s nearing the end of this time in the hospital. Maybe. The interventional radiologists may extend her feeding tube deeper into her upper digestive track to discourage backing up and leaking. She had a feeding last night and didn’t leak. That’s the reason for uncertainty.

The leaking stoma site sounds innocuous. It leaks, wipe it up? No. First, the leaks happen at night and produce a wet splotch of Jevity. It’s sticky and uncomfortable. If it’s a big leak, the sheets and covers get involved. Result: less feeding, maybe as much as 30%, and lost sleep, plus feeling icky in the sticky.

This has been going on since the tube got placed a year and a half ago. The other sequelae of a leak? An irritated and sometimes infected wound around the stoma site. That’s the wound I’ve been treating now for months under the guidance of Amber, an Advanced Wound Care specialist. If we can stop the leaking, stop wetness around the stoma site, the wound will heal. That would be a big deal.

She has an appointment with her cardiologist this Thursday via telemedicine. Atrial fibrillation followup. She was put on a blood thinner, one somewhat more powerful than the baby aspirin she’s currently on. Need to see what else might help. Tatiana is a good doc. She’s already helped Kate a lot.

Her lung issues have shown stability for a year. Yet. She has had three pneumothorax events. Not sure where that is right now. She has no treatment for the interstitial lung disease. Why? The treatments have bad side effects and Dr. Taryle, her pulmonologist doesn’t want to prescribe them until she exhibits an unstable course for her disease.

I’m looking forward to having her back home though I’m grateful she’s had this chance for scrutiny, especially on the feeding tube. The higher calorie feeding liquid is here, delivered on Wednesday. With this she should be able to lower the flow rate of the pump which might also reduce leakage.

Lot of moving parts.

Oh, and on the 19th I get my PSA tested again. This is, contrary to what I believed earlier, the one with Lupron gone. If it’s clear, the possibility of a cure still exists, might already have happened. That would be nice.

Winter and the young Imbolc Moon

Friday gratefuls: Kate. Always, Kate. The Fall of the Trump, inspired and realized by American Visigoths and barbarians. Illness and frailty. Aging. Covid. 5 days. Impeachment. Again. Still. Always. The winds. A busy day yesterday.

I posted this on Kate’s Caring Bridge site yesterday afternoon:

Well. Kate will be in the hospital until Saturday. Last night she had atrial fibrillation that dropped her blood pressure and gave her tachycardia. The docs need to decide whether to treat her for it or not. Blood-thinners, for stroke prevention.

The pneumothorax was small and may have healed under 100% oxygen. Her feeding tube reinstalled, she starts getting the higher calorie liquid now.

She is weary. When I asked her how she was feeling, she said, “I wish it wasn’t happening to me.” Yeah, me, too.

Covid makes visiting her not possible. The dogs and I live our usual lives. Get up early. Doggy breakfast. Write Ancientrails. My breakfast. Read newspaper. Around 4 pm doggy dinner. Get fresh water for them morning and evening. In between workout, comb Kep, vacuum, things like that. Wait for a call from the hospital. Eat well, get good sleep.

Lost a little sleep last night. Maybe an hour. Ideas rummaging through memories, trying to find something distressing. Read a good quote: keep the front door and backdoor of your mind open. Let ideas come in and go out. Did that. Took a while but I went back to sleep.

Stress? Oh, yes. Using all my learnings. Deep breathing. Front and back doors open. Consolation of Deer Creek Canyon. Looking out, clearly, over the absurd and the abyss. Checking in with friends and family. Workouts. Being with the dogs. Seeing Black Mountain, Arapaho National Forest, our wild neighbors. Really seeing them.

Working. Stress not overwhelming me.

I’ve allowed myself to go to the worst places, the most difficult imaginings, then go on. Kate is not dead, not dying; but, she is in great difficulty. We can navigate our way beyond this current rocky stretch, get back to cribbage and Sherlock, meals together. Her crosswords. My writing.

I want that. She wants that. We’ll see.

Winter and the Imbolc Moon

Wednesday gratefuls: Swedish ER. Swedish hospital. Feeding tubes. Interventional radiologists. Pulmonologists. A long sleep last night. Exhaustion. That fuckhead. One week. Impeach him. Convict him. Imprison him. No mercy. Calm. Deep breathing.

Kate’s back in the hospital. She has a pneumothorax again, in the same spot as last two times. A leak, if you will. Her feeding tube, the one placed on Sunday, came out on Monday. So it needs replacing, too. Not sure how long she’ll be there and I can’t visit her. Covid.

A lot. She’s had two trips to the E.R. this week already and now a hospital stay. The last three weeks have increased the level of difficulty here. For both of us. So much that I’m glad she’s in the hospital so I know she’s ok. That’s weird, eh?

Not easy to describe my feelings right now. I’m so tired. I slept almost 12 hours last night. Kep and Rigel were more than ready for breakfast. I’m worried about Kate, of course, but I’m glad she’s where some folks can pay attention to her medical needs.

We’ve both become frustrated, which is a nice word, with the medical care system. Managing her feeding tube is a nightmare when a problem occurs. No one owns it as their responsibility. Most don’t know how to handle it. See this Sunday’s ER visit. Yet it feeds her. Pretty important.

She’s been sick so long that it’s hard to discern serious symptoms from not so serious ones. And, to know who to reach out to discern the difference. Sjogren’s complicates everything with its suite of symptoms, like fatigue and low grade fevers, that mimic the symptoms of other diseases.

Then there’s the emotional toll all this takes on both of us. Hard.

Winter and the Imbolc Moon

Tuesday gratefuls: Easy Entrees. Pork Schnitzel. Peasant salad. Feeding tube. Jevity. Kate, always Kate. Our democracy. Our nation. 8 days. Impeaching. Prosecute. Sleep. Sleep.

And, again. The tube slipped out again. When the E.R. doc put it in, she couldn’t get in the same size Kate had, so she inserted one one size down. For whatever reason the balloon that we inflated yesterday, deflated. And, out came the tube.

This time I couldn’t reinsert it. It’s tricky. The tube too flexy. The stoma has begun to close a bit. That’s the worry. That the stoma will close and have to be reopened surgically. Kate’s so fragile that anesthetic and the insult of surgery might be too much for her.

Kate’s nausea kicked up this morning. That’s the worst condition for her. She hates retching and nausea. I mean, nobody likes it, right? But, she hates, hates it. Waiting for all that to stabilize, then I imagine we’ll head back to the ER at Swedish where they did a poor job last time. Get them to fix their error. We’ve had good experiences there. This was an anomaly.

It does come, however, after Sunday’s long visit there. It does come, however, after Friday’s O2 concentrator failure and the resulting hypoxia. It does come after three weeks of extreme fatigue and low grade fever. It also comes, this time, without a feeding since it came out as she was starting last night’s Jevity. So very not good.

I got good rest last night. I’m no longer exhausted, though I am tired. My mental state is fine. Yesterday morning, not so much. I had to have a morning to myself. It was good, too. Got a workout in. Had time to just be. To recuperate myself. This introvert had been on task too long, with too many people in the picture.

Not sure where all this is going. More time at the E.R. ahead of us. Tough.