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Life, or something that resembles it. (Language, as always)

Long time no see and I'm sorry for that. Since I was last regularly active here, life has taken a few interesting turns. My mother's medical situation has become more... interesting. If by "interesting" one means bizarrely busy, irritatingly tiresome, and hectic, then it's been very interesting.

Today, she had a surgery to install a piece of kit called an "arteriovenous graft" AKA an AV graft. It, once healed and "matured", will give the dialysis folks a better access point. That'll take a couple months and then she'll be able to use it as her dialysis point of... dializing.

This is really the first full hour or so I've had to myself in a couple weeks. Tonight was surprisingly hectic but because of their meddling and fussing in her arm, they dosed her strongly with top-shelf painkillers. Sad to say, but it's the only true rest either of us have had in far too long.

I've been serving as driver, shopper, and occasional mechanic. Keeping her appointments straight is a chore, getting all the right things from the store is a chore, and keeping our ol' beat up pickup in one piece that moves down the road is an endlessly endless job.

Add to the list a few new duties, like nurse... She was given a Jackson-Platt Drain, it's a bulby sucky doohicky that is going to help draw unexpected fluid from her new wound, and it's a bit of a bear to work with. First, it's a plastic/rubber bulb hooked up to a tube that goes into her wound. The process is somewhat straightforward: the little pluggy doohicky (not to bore you with tech jargon) is pulled out and the bulb drained into a little cuppy thingy with marks on it in milliliters, CCs, and ounces. Then, the hole and the pluggy doohicky is sterilized with an alcohol swab, the bulb is compressed, squeezed, and the plug inserted while it's compressed. The suction thus created draws out the fluid.

It's a helluva lot less technical sounding than it seems. Still, for a motor mech like me, it's like flying a spaceship full of robots. I'm totally out of my element, unsure about every step, and keenly aware that any mistake I make can have dire ramifications, many of which involve a slow drive followed by a burial... No pressure. Seems like pressure is my middle name. My first name is T.E.J., one initial to represent five generations of men, 99% of which were dead and gone before I was born. Having a part of the legacy of so many men on my shoulders is really nothing compared to this stuff. That's kiddy games. This is the real deal. I screw this up, I'm not mildly tarnishing the reputation of men who are gone, it could KILL my mother. True, I doubt the law would see it that way, but I sure as hell would and that's something I don't want under any circumstance.

Also, in the process of installing the AV Graft, her left arm was essentially... turned off via nerve block so the graft could be installed without so much pain. Temporarily, we hope, but turned off nonetheless. She is beginning to get gross motor function back in her fingers, but it's still a lot like watching her control the limb from a distance. As such, other tasks have become part of my daily. Firstly, I challenge each of you. Life your life with only your dominant hand. Every task you do, do it with one hand. Hell, just imagine doing it with just one hand. She's right handed and she has that hand but there's tons of things that need two hands. Eating, for instance. At the hospital they gave her a cup of applesauce, a turkey sandwich and a couple packs of mustard and mayonnaise. Easy stuff until you try to eat applesauce with one hand, or open those little packets to put them on the sandwich with one hand.

I had to feed her. After supper, I got to administer her insulin injection. I know how to fire the insulin, done it many times before, will likely do it many times again. There's something... so wrong about plunging a needle into someone. I know, nurses do it all the time, lots of people do it all the time. Still, I'm not really comfortable plunging a needle, even a little one, into the skin of another human. That the human is my own mother, someone whose comfort is my predominant concern.... that doesn't help. Still, she couldn't do it herself with only one hand so I'm her hands. There's lots of little tasks I've picked up for her in the last twelve or so hours. In time, hopefully her hand will work again (it's not a sure thing) and she can slowly absorb those tasks herself.

Until then, she's gotta put up with my bumbling incompetence and the humiliation of not being able to do about half the things she'd normally do. True, she hides it well, but only a fool could undergo this... mess, and not feel humiliated. She hasn't been spoon-fed applesauce in probably 50 years, and tonight I held the little cup while she scooped up the stuff. The last bite took more dexterity and I helped her. It doesn't really bother me but I can tell it's bothering the hell out of her. Having to have help putting on shoes, clothing, it's not something she's used to and I doubt she'll ever warm up to it.

Next Tuesday, we go to have her drain removed. I can already sense that she's looking forward to that. Me, I'm not too worried. I managed to figure out some math about it. She's a mathnerd, I'm a... hit it with a hammer and see if it wiggles kind of nerd. But I crossed over the confusion curtain. I managed, clumsily, to calculate some pretty tricky math. Take the amount of output, take the number of minutes between drains, wobble them at one another until a figure pops out, multiply that by 1440, the number of minutes in 24 hours, convert that from milliliters to fluid ounces. Via the power of mathemagics, we have her output per 24 hours.Through three drains, we've noticed a substantial decrease in her drain output, from 6.77 ounces (200 milliliters) per 24 hours down to a wimpy 2.055, 60 milliliters per 24 hours. Frankly, I think being able to see the... effort on my part has helped her confidence. This isn't something I'm doing because of honor or duty but something I'm doing because I give a shit. That's not something that I think she feels about all the medical staff she's dealing with. Plus, she kinda goes all mushy when I do math because she knows I despise the crap so much. I don't have the heart to tell her that I hate it because none of it makes any sense to me. 2+3=5, but why? Who decided that two figures put together make another? I like simple. Math is about as simple as explaining nuclear weaponry to a caveman. I can spell like nobody's business, I am fairly good with geography and geology, math is my Kryptonite.

My biggest worry? A friend of mine assumes it's "letting her down" or "failing her". Nope. Not even close. My biggest worry is that I'm not sure where this all goes. It started off as dialysis thrice weekly, then four days weekly, then five. Now, trips across three counties for surgical procedure and follow up, plus five times weekly dialysis sessions.

That's what's keeping me from being asleep at damn near 2 in the morning, and what occupies my mind when I'm awake. Where does this all go? In-Home care? Staph? A staph infection is not outside the realm of possibility with these folks wandering around inside her body, especially considering that most staph infections are "caught" in hospital settings.

I don't really know where this road leads but I have to admit, if it keeps going in the direction it's been going... I'm going to need as much rest as I can get...


I couldn't imagine going through what you're going through. You're one helluvah man, keep on truckin'. Hopefully you'll get a lot of time to rest soon and maybe come back to the forums and stay for a while! :)

Best wishes,

Just know TJ, that if you need anyone to listen to ya, if you need five minutes away to clear your head, morale support, whatever we as a community can help provide for you, we will. We are here for ya if you need a figurative shoulder to lean on. Keep on friend. Thinking of you and your mother and sending you all good thoughts. Thanks for sharing with us.

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