DAD UPDATE: PICC line saga

Parkinson's has landed my dad in the hospital again. Specifically, an infection did.

To put it in layman's terms, a Parkinson's patient with an infection degrades to the point where they are too weak to move, and can suffer from dementia and hallucinations, and can not function.  If you want the technical bit, here's the abstract from an article in Frontiers in Neurology.
Parkinson's disease is a neurodegenerative disorder characterized by progressive loss of dopaminergic neurons of the substantia nigra pars compacta with a reduction of dopamine concentration in the striatum. The complex interaction between genetic and environmental factors seems to play a role in determining susceptibility to PD and may explain the heterogeneity observed in clinical presentations. The exact etiology is not yet clear, but different possible causes have been identified. Inflammation has been increasingly studied as part of the pathophysiology of neurodegenerative diseases, corroborating the hypothesis that the immune system may be the nexus between environmental and genetic factors, and the abnormal immune function can lead to disease. In this review we report the different aspects of inflammation and immune system in Parkinson's disease, with particular interest in the possible role played by immune dysfunctions in PD, with focus on autoimmunity and processes involving infectious agents as a trigger and alpha-synuclein protein (α-syn). 1
Dad initially went to the ER when he was too weak to stand. It happened shortly before dinner, a sudden and rapid degrade that left him confused.  The hospital kept him overnight for observation, cathed him because he is incontinent, and released him... still cathed.

Hell hath no fury like a peeved daughter's. My mother only listens to "real medical professionals", meaning those that are currently working and not retired in order to take care of family.  So I had to browbeat her into learning how to clean his uncircumcised penis to mitigate infection traveling along the plastic tube. Oh the horror! As if I've never seen a dick before.

"I can just wipe it. It's only pee," she said.

"Ma..." God bless her, but there are days I wish she knew how to use the Internet. "If you don't do it properly, you put him at risk for a catheter-associated UTI."

"It's just pee and maybe fungus."

"Ma. Just. Stop. Do it right. We want to prevent a staph infection. Those are bad because they're are usually caused by antibiotic-resistant strains. If he gets it, it can lead to serious problems, especially because he has Parkinson's."

She looked at me like I'd grown an extra head.  "You don't get staph infections in a penis."

I went upstairs and printed out instructions for cleaning. I pulled it from WebMD because it looks official when printed.  

Two days later, the visiting nurse arrives. Why did they discharge him with the cath in? She looks at the instructions I printed, tells my mother this is how it's done, and then shows her how to do it.

That evening, Dad has sunk into another odd stupor.  "It's an infection," I growl. We call TEMS to cart him to the ER.

And guess what.  It's a staph infection. For fuck's sake!

At this point, it's ravaging him pretty hard. He can't speak. He can barely move. He thinks he's at the Air Force Academy in Colorado Springs (where he worked over 10 years ago). He knows who my mom is, and who I am, but can't recall what year it is. "1998?" he says.

He's back in Trinity East, which is the hospital's skilled nursing facility.  Two nurses and two aids for a massive floor. I'm fiercely protective of them. They aren't paid what they're worth, and they're so overworked that it's pitiful. The Physical Therapy department is awesome, as are the Occupational therapists. Together, we form a team bent on getting dad back on his feet.

We've done this dance twice before. Get rid of the infection and his faculties return.

The problem is that Trinity does NOT consult with the patient's doctors. They just diagnose and go which, for someone like my dad, can be detrimental. He has a clotting disorder. Fucking with his rat poison can have serious consequences.  But hey, what would his cardiologist, neurologist, or primary care physian know, right?

So this has been a two-week battle. My mother goes to visit him every day. It grounds him in reality, plus he'll eat for her.  He's taken to spitting out his pills and hiding them, the fink, but now they get crushed in applesauce. Her presence also takes some of the workload off the staff. Instead of being a "problem patient", they regard him as a sweetheart and our family as volunteer staff.

When I stopped in the other day, I noticed his hands and arms were black from bruising. They need to draw blood daily.

"Why doesn't he have a PICC line?"  The man's veins collapse, twist, burst, or vanish routinely. He's developed a needle phobia over it.  And those valves are so scarred that we're lucky if we can see even a brief flash before it all shuts down. It's part of the clotting factor as well, hence I have a Bard Power Port.

The nurse is frustrated. The doctor in charge didn't want to order a PICC. Hey, they have to be maintained, right? That's too much work or something? She agrees that he needs one and has told the doctor so twice already.

As any good nurse will tell you, hospital doctors are the most frustrating, stubborn people in the world. But I have a double-edged sword. Not only am I retired and have nothing better to do, but I'm my father's MPOA. And two days ago, when I stopped in and saw those arms and hands, I silently blew a gasket.

I brought my mother home, and then sat on the back porch to have a cigarette while Better Half took the dogs upstairs (her dog needed to eat).  I called the floor. "Tell Dr. KnowAll I want a PICC line placed. What he is doing is not only cruel to your patient, but cruel to the staff that has to struggle and hurt him just to draw labs."  The nurse is on our team, and she agrees with me. But our hands are tied by the doctor.

Friday, I drop my mother off and tell her to call me if there isn't a line in. She did. There wasn't.  There isn't any order in for it. Dr. KnowAll wouldn't be in until the evening. Bullshit. 

Trinity West has one of the best radiologists trained in vascular interventional procedures. Dr B has done the procedure on my dad before. And, since I was a frequent flyer in that department during my RAI treatment, I'm on good terms with the staff. I called to confirm there isn't an order in. But would they be able to do it on Monday, if the order goes in on Friday evening? Sure. They even have an opening in the afternoon, and Dr B is available.

I call Trinity East and speak to the nurse. NOW we have ammo. The patient's medical power of attorney has arranged for PICC line insertion to be done on Monday once Dr KnowAll signs off. And if Dr KnowAll doesn't order it, that MPOA will pay the administration a visit... just like before.

It's at this point that I will reiterate that I can't visit either Trinity hospital in the evening without at least two people asking what department I work in. I don't work there. I haven't worked in the medical field since leaving Colorado. But I'm in that ER too frequently for both of my parents or my husband. 

While cooped up there, I bend over backwards to help wherever I can, even if it's something as simple as escorting someone's family member to the vending machines or chapel. I can find my dad's veins when all hope seems lost and the tech is on the verge of tears. I suppose my usefulness is also why I have an employee discount tag for the gift shop, plus I can ask for a cup of coffee and nobody protests (ER staff coffee is the most potent shit out there.) I'm welcomed as a colleague most of the time.

And Dr KnowAll also covers the ER on occasion.  I imagine he wasn't very happy on Friday. He knows me. More specifically, he knows I've been right too many times to disregard my assessment. And he knows my dad's team at East has my full support.

I bring my mother home Friday evening. The nurse calls her to update her. They're putting the PICC line in on Monday.  Mom's elated. "Thank God!"  She hasn't any idea that I involved myself.  I'm fine with that.

I brought her down today, and then chored for the fam. Made soup, even, so she could have a hearty meal when I brought her back home.  Dad's doing better, cognitively. They managed to get a urine sample. We'll see if the staph is gone.  

But this is the drama that has occupied my life for a while. We play it one day at a time. I'll consider the month a success if we can get dad home before Christmas, I can save a turkey, and we can knock Better Half's A1C down so he can finally schedule his knee replacement surgery. Double success if we can rule out my fatigue and other issues as just fatigue and other issues rather than the tumor in my adrenal gland going ballistic again.

Don't ask about fence rails. Just. Don't. Ask.

1. Caggiu Elisa, Arru Giannina, Hosseini Sepideh, Niegowska Magdalena, Sechi GianPietro, Zarbo Ignazio Roberto, Sechi Leonardo A., "Inflammation, Infectious Triggers, and Parkinson's Disease", Frontiers in Neurology  V10 2019.