Sometimes its Draining

Once he was transferred to a regular floor, it was hard for friends and family not to be hopeful. I had no trouble totally ignoring the concept of hope.

I was having no more luck being in the right place at the right time for medical consults here than I did in MICU. I was beginning to suspect the doctors had hidden a GPS device in my bag to ensure they get in and out before or after I arrived. It was starting to feel like a game. We had just enough rare encounters to prevent me from calling them.

And really, what was the point? You can only hear “We just don't know what we're dealing with...” so many times before you grow dead weary of the questions. I hate that it sounds like I'm criticizing the doctors. I'm not—my expectations aren't that high. And I feel they are truly as frustrated as I am.

This is why I don't watch medical shows on TV. Never have. I work in the medical field—if I want to watch science fiction I'll opt for Star Trek. It's more in the realm of reality. “HawthoRNe” Pa-lease!! An RN who's a bitch is not going to use her power for good because a. doctors and administration won't allow it, and b) doing good undermines being a bitch.
Mainly I don't watch the shows because a sugar coated dose of what I've been dealing with all day is depressing. I'll admit to watching “HOUSE”, tho, because I don't think of it as a medical show, it's more like a mystery, with a fascinating lead character that takes place in a sort of a hospital setting. (CLUE: Even if every nurse in the hospital were on strike, doctors would not engage in patient care like they do on that show.)

But I digress. There were blood tests almost daily. They identified the bacteria, applied the appropriate antibiotic, and scratched their heads when the infection did not respond accordingly. Therefore, it must be colonized somewhere. They asked repeatedly if Rich was hosting any foreign bodies. Few set up lines are more perfect and it felt cruel that I had to respond seriously. No matter how many times they asked, the answers were still the same. No, he did not have an artificial knee, or any artificial joint; no pins, no rods, no artificial heart valves, no metal of any kind. Nothing that this particularly “sticky” type of bacteria likes to latch on to and take up farming. They were leaning towards the bladder or heart valves. They did not think it could be the scrotum despite the fact that it was the size of a foot ball. (Seriously, when he showed his testicles to his brother, his brother nearly fainted.)

I went out on a limb and asked if it could be the liver where they had done the needle, clamping, chemo and killing of tissue? Mmmm Probably not. This isn't that type of bacteria they explain.
Right, it's the kind that colonizes on metal implants that don't exist in Rich's body. That was the last question I asked. It was far easier when they just said “we don't know”. At least then I didn't feel like I was getting jerked around. I was sure of only two things.
1. Rich was going to pull through this.
2. They were doing the best they could.

Okay, three things—I was exhausted.

On Aug 7th, after the third or fourth CAT scan (I was losing count), they decided something was going on in the liver so they inserted a drain tube, WITHOUT benefit of any medication other than a topical. I was not informed of their decision to do this procedure or I would have been all over an order for something to get him through the excruciating pain of it. Boy did that drain produce some nasty output. When they tested the drainage, they discovered that a second bacteria and two different fungi had shown up to the party. So now they had to change the antibiotic, and add an antifungal to the mix. At one point he was getting nine IV a day.

Between IV treatments, blood tests, and monitoring his vitals, he was lucky to get two hours of sleep at a stretch, and with the catheter gone, his own body was waking him up to pee every couple of hours.

He was still fairly “out of it”, but now it seemed less from the delirium of infection and more from sleep deprivation. Combined with malnutrition, and too many days in bed, it took two people to help him stand and pivot to a chair. With the edema finally gone, it was shocking to see how much his flesh had wasted. Rich had always been brawny, football tackle built. Now there were bones prominent that I had never seen or felt before. Every physical effort left him trembling with fatigue. Brief conversations weakened him.

I had NO appetite and usually didn't even try to eat. But I sat enough hours at his bedside that I soon felt I had found every pound he had lost. Talk about insult to injury. I was no longer doing my daily workout. Most of my waking activities involved driving and sitting beside him. I was burning so few calories that black coffee was fattening.

I wasn't sleeping any better than Rich was. Without my treadmill, yoga and weights, or a healthy diet, my hot flashes were out of control. Between the multiple episodes of unbearable hot flashes, and the fun house tour of nightmares, every night was just a string of half-ass naps.

In the interest of full disclosure, it's important to state that I did not spend every day, hours at a time at his bedside, mopping his fevered brow. I was there, available and responded to his needs, but for the most part he slept.
On three occasions I did not to go the hospital at all. The result of reaching a level of frustration that made me unfit for human consumption. Frustration with the situation—the confusion, the unknown, the fear. And sometimes with Rich. I'm human, and sometimes it was hard to watch him expend every ounce of energy he had for everyone in the room but me. I know that sounds selfish, but there were a couple of times when I wondered if even the Virgin Mary had occasion to roll her eyes and think “yeah, yeah, he's all that, but I'm the one who changed his nappies and wiped his nose...”

Gimme a break, I said I was sleep deprived.