The good news: Rich will outlive me

All that talk about food just to provide necessary background for what comes next.

Suddenly, and I do mean without warning, I entered my magic hour in MICU to find that my world had shifted 17 degrees. Rich was sitting up, animated, totally engaged, disconnected from at least half of his tubing, and his monitor was humming along happily on all levels. I still, however, do not like roller coasters.

No one is telling me anything other than he's being transferred out of MICU, and while I'm quick enough to realize that the alternative transfer out is the morgue, my joy is tempered with the flood of questions a cognizant brain would need to process. Luckily, my needs have never been an issue here, so there will be no delay in processing Rich's transfer.

The ticket out of MICU is passing what's called a “cookie swallow” test. No cookies are involved. I was present, I assure you of the absence of anything resembling a cookie, even if you're British, because a saltine was the closest you could pretend to a cookie and even Brits don't consider saltines to be cookies. Trust me. There was a saltine, a mini portion of applesauce, and three cups of tap water with varying saturations of clearless, tasteless thickener.

Rich had to follow the commands of swallowing each of these items while the speech therapist held her fingertips under his chin at the base of his tongue, asked questions and watched for choking. I found it quite interesting. Rich thought he was having a feast. His first meal in six days—he was waxing poetic, had everyone laughing, and has absolutely no memory of any part of it.

Rich passed his cookie swallow test to everyone's amazement but mine and Rich's. Two things motivate Rich—a challenge and an audience. He had both. I have questioned him three times on this. He remembers nothing.

So now he could be moved to a Cardiac floor. (they still needed to monitor his A-fib and more on THAT later)

He was started on a mechanical soft diet, while continuing the NG tube feed. Sometimes it was mechanical soft, sometimes it wasn't. Most of it he couldn't eat, despite my prompting. Finally he said, “Taste it!!”

Oh my god. If you've spent 15 months trying to eat uber-healthy because you're dealing with cancer and then you find yourself eating hospital food!?! It tasted like warm, semi-chewed grainy mushiness with five times the amount of salt necessary to pickle meat. It is mid summer and their fruit offering is canned fruit cocktail that immediately transported me back to my 1960s grade school cafeteria. And skimmed milk. And coffee—on a cardiac floor with A-fib!?!?!?!

Three days into his stay on the cardiac floor and we were visited by the dietician. She dressed like a doctor so I assumed she was a) intelligent, or b) important. I am still unable to pick one.

She asks us about his appetite, his ability to eat, yada, yada, yada. She informs us that based on his lab work, Rich is “malnourished”. Her suggestion to us..... “Maybe your wife could bring some meals in for you from McDonalds.”.

Rich looked at me. I looked at Rich. 63 brain cells exploded in my head that I will never get back.
Neither one of us could speak. I was praying the dietician would not speak. Alas, she feels the need to elaborate. “Maybe you could smuggle something in...” I watch 126 brain cells fire from my third eye and smash into the wall above her head. I'm trying to remember that this is amusing, but right now it's just painful. I probably don't need to recap here, but please humor me.

We are at the mercy of a medical center rated one of the top fifty in the nation, and their top level dietician recommends McDonalds to treat malnutrition. On top of that, you're telling me that YOU don't know how to deal with malnutrition within your institution so it is now my job to SMUGGLE? Gee-zus=H, I could write volumes on THAT. Kryste—what is contraband—FRESH FRUIT?

I said nothing. Mainly because I was trying so hard not to burst out laughing. Then she said she would order a dietary supplement for EVERY meal—tasteless, innocuous, and Rich can stir it into his meals. She asked if Rich was agreeable, and Rich was all over that. I thanked her profusely just to get her out of the room, and resisted the urge to remind her that at this point Rich was not able to open beverage containers, let alone open and mix your elixers into his inedible food.

Luckily it was a moot point. In the following three weeks in the hospital, with three meals a day, he received a total of three trays with a nutrient supplement cup. I, however, began cooking and shlepping two meals a day plus snacks. I left the dietary experts to handle breakfast because Rich really liked their scrambled eggs.

When it comes to shlepping food to a patient, it's not just the transport and presentation. I'm traveling 40 minutes in 90 degree weather. I've got a ten minute walk from car to bedside laden like a pack mule. I'm not running back and forth, so I load the mule once a day. That means the food, and all the necessary ice packs, not only for transport, but also for storage in the room. Don't send anything to the nutrition room fridge that you ever want to see again—putting your name on it is a waste of time and ink.

The doctors appear thrilled that I am bringing food into Rich, that he is not eating “hospital food”. I find this attitude disturbing. I'm wondering how this will impact our bill—not as a critical point, just a matter of idle curiosity.

So there's me “smuggling” food in one day from a gourmet restaurant to fulfill his request. When the nurse tech comes to collect his lunch tray, I explain we sent it away because I brought his lunch. She says, “How much did he eat?”
Me, who has lived in this world for too many days says.... “Eighty percent”.
She smiles and notes the 80% and I lose more brain cells because she doesn't even have the sense to ask 80% OF WHAT?!?! 80% of a pack of cheese crackers? 80% of a four course meal?

Rich had a full tummy of lovely food and he drifted off to sleep. I sat there and cried with the incredible frustration of another day in non-stop insanity. Seriously, there are days when stupidity makes you cry. On a pain scale of 1-10, it's an 8.

Before you think I'm just thin skinned, I need to mention the other straws that lay upon this camel's back.
Too many times I enter his room to find his urinal sitting on his bed tray, lid open, empty but NOT rinsed, smelling of urine. The first three days on this floor I asked about his hygiene and was assured it was being done. The third day I discovered that his foley tubing was fully caked to the opening of his penis, the skin of his groin was excoriated from the swelling of his testicles, as well as fecal matter.

I am NOT blaming staff. His nursing team is among the best you can imagine. But they are short staffed and spread WAY too thin. I have walked in their shoes and I know.

The day he had two units of blood transfused, the edema in his lower extremities and testicles traveled up into his abdomen. He was short of breath so I asked his nurse how much Lasix he was getting.

NONE.

Edema for over a week that made his skin shiny and looked ready to split open. Two units of blood, and now he's short of breath and I can see his abdomen is swollen. I asked someone to please call a doctor and ask for a Lasix order. Lasix was ordered that night.

Doctors couldn't determine where the infection was colonized--it was raging through his blood but they needed to find the source. Understandable to be sure. But based on everything they were testing and trying, there came a point when they were concerned the infection had colonized in the heart valves==typical for this kind of bacteria. A TEE was scheduled for Friday. A tube down the throat to view the valves. It requires NPO (nothing by mouth) after midnight the night before.

I came in Friday morning early to be with him before the procedure. Well Fuck Me, no one turned off the tube feed. By god he didn't get a breakfast tray, but they were pumping “nutrients” into his stomach all night long via his NG tube. The cardiologist scheduled to do the test was NOT a happy camper, and apologized to me for this error. My response was, “no problem, just do it tomorrow.”

You would have thought I had just demanded his left testicle on a platter. He looked me square in the eye and announced that “Tomorrow is Saturday.”

My innocent, trusting response to the obvious only confirmed for him my total stupidity. So he explains for my simple mind that it can wait until Monday.

REALLY? REALLY. All I've heard for days is that everything hinges on finding the source of this infection that is not responding to anything ya'll are doing, and then I hear that that means it's probably in the heart valves since you've ruled everything else out, so we have to do this TEE test to make sure the heart isn't being DAMAGED, and now it CAN WAIT UNTIL MONDAY?!?!?!?! THREE DAYS!! REALLY? REALLY....

NOTE TO self: the Hippocratic Oath is suspended on weekends and holidays.

All of this on the heels of no less than three Nurse Manager Case workers entering the room to ask me IN FRONT OF RICH, what my plans are for hospice and end of life care.

Gee=zus, H. Kryste. I am SO done with you people. I no longer have any hopes or expectations of you healing him., or even contributing to the process. I'm just praying you don't hurt him. And I'm wondering how I will find the strength to protect him from your care.

But the good news is that Rich will outlive me, because I'm feeling dangerously close to a cranial implosion.