Sympony Hospital (or part two of Ramon Revisited)

Symphony hospital is in lovely suburban Symphonia, a second ring suburb with lots of new houses and malls, offices and clinics, all painted a shade of beige. The great thing is that unlike hospitals I have heard of, there is plenty of parking at Symphony hospital. Plenty of parking. Acres of handicapped spots, which we have the sticker and the crutches to use.

People are wearing scrubs and stethoscopes, and there are fountains and art. Just like a real hospital. I start to feel better, and regret calling them Legs R Us in an email to my sister. We get up to the Orthopaedia Clinic and really can’t find a place to sit where there is room for Ramon’s extended leg (it doesn’t bend at the knee). Ramon stands for a while and I rig up a chair in front of a chair so he can sit. He does so gingerly, clearly in much pain. He is starting to sweat profusely.

We talk. I talk. I try to keep his mind busy so he doesn’t think about his pain. It isn’t working that well because he starts to sweat actual bullets. They clink to the floor and the other patients wrinkle their noses in disgust. This annoys me. I didn’t want to watch the woman with one butt-cheek much bigger than the other limp into the office, but I wouldn’t wrinkle my nose at her.

I notice that Symphonia has a fountain instead of an aquarium in the Orthopaedics clinic. It’s a verdigris sculpture of lily-pads at varying heights, facing different directions. The water runs off one lily-pad and onto another, then another, then to the pond. It’s much louder than an aquarium. But pretty classy, except for one unnerving detail. Twisty-tied to a number of the pads are those little styrofoam birds. You know the ones with the wire legs and real feathers glued on?

I know this is superficial, but the twisty-tied-styrofoam-feathered birds and their nests make me feel sort of panicky. Like I know they’re tiny, tacky little harbingers of doom. But I kept talking.

We went were finally called back into the office. The assistant, whose beautiful chestnut hair, freckled tan and frost-pink eye shadow and liner leave me entirely ambivalent. She’s so darned cute that even when she calls Ramon a goof-ball (the man is wincing and sweating every step of the way), I can’t decide if I hate her or not.

They bring Ramon down for the x-ray and bring him back up. We wait for another long, long time, but now no one is watching us suffer. I open the door so they don’t forget us. Outside the door are two life-sized, full-body x-rays. If you look close, can see the shadow of the people, except their genitals, which appear to have been discreetly covered with little lead cut-outs.

While Ramon sweats and breaths, and the office staff joke about whether call Applebees or the Indian place, I look at the x-rays. I realize that I can’t see the genitals, but I can clearly see the name of the patients. One man and one woman. Out in the hall, fully lit are Marion and Jeff’s bones. Jeff’s got some sort of leg deal, pins or something. I can’t tell what’s wrong with Marion. But not for lack of trying.

The assistant comes in and asks him to get on the table. This is easier said than done. He asks her if she can look at the machine on his leg because it’s beeping, it’s been beeping since last night. “Oh! Is that you?” She checks it out, pushing buttons and furrowing her brow. “Well, something’s not working right, maybe the batteries are low?” Yeah, maybe.
When the doctor comes in he says, “The machine isn’t working, Ramon. This is one of the risks of the operation. Remember, I tried to talk you out of the operation? The infection and this possibility are two of the reasons for that?” Ramon remembers. Except that when I ask him if he understands the phrase, “talk you out of” he says, “Yes, it means he explain me.” I translate” talk you out of” as “convince you not to do” he nods slowly. I wonder how much he thinks he understood in this whole process.

The doctor says, “Well, we’re onto plan B. That means we put the manual struts on and you turn them by hand. If that doesn’t work, we can do the surgery again and try to cut the bone better. I think this will work, though.” He leaves and returns a couple times throwing things that look like auto parts onto the counter.

He and another surgeon go to work on reinstalling the struts, they take about 5 minutes to do it. I offer to hold Ramon’s leg up because his face is contorted from the position they have him in. That would be great. Ramon relaxes. They go out for some other pieces and I hear the two doctors talk about how two of the struts are actually installed upside-down. The second doctor asks if it matters. “MMM Nah, I don’t think it does.” They decide to leave them upside down.

All this really means as far as I can tell is that instead of having the turning dials at the top of the bolt, it’s at the bottom. It still works just fine. All the same, it contributes to my growing unease.

They never so much as moved a bandage to look at his infection, I never saw them take his temperature, they certainly didn’t clean anything. They did give us a prescription for a heavy-duty antibiotic.

All in all we spent from 11am to 1:30pm at the outpatient clinic of Symphony Hospital.

That night Ramon was admitted to the hospital through the E.R. He stayed 3 days while they tried to get his rapidly spreading staph infection beaten down and control his pain.

Next entry I will tell you why Patrick and I are partly responsible for this hospital visit.

Ramon Revisited

Someone please be kind enough to tell me when my life crossed the line into sit-com territory. Like pornography, I think you’ll know it when you see it. But being in the middle of it, it hasn’t seemed funny at all. It seems arduous and uncomfortable. But if you laugh, I won’t mind.

There’s an essay about Ramon somewhere on this blog. Here.
Just explaining who Ramon is to people who don’t know us is dicey. I had settled on, “My late mother’s husband” after much consideration. “My mother’s husband” doesn’t work, because he is really “my mother’s widower”, but that doesn’t just roll of the tongue either. Stepfather doesn’t work at all for me, although he doesn’t bat an eye when telling people I am his daughter. I think that makes him a much more generous soul than I. I’m sure I think about it way too much.

So now that you know who he is to me, you’ll understand why I am even involved with this guy at all. He lives in my mom’s house with my brother, a fiftyish woman friend of the family, and an engineering student from Benin, Africa who is renting a room.

Ramon had polio when he was younger. It left him with one leg about 4 inches shorter than the other and very attrophied. I swear to you I think I heard the surgeon refer to his femur as “avian”. This Leg Lenghth Discrepancy (look it up) is causing him much trouble at this stage of his life. His back and hips are paying a dear price for his ability to walk on two feet.

So he has decided to have surgery to lengthen his shorter leg. The surgery is rare and barbaric. If you want to see an idea of how it is done, you can go to this link or this link

If you’d rather not see a picture, here is what happens. There are three sets of flat metal rings, like on Saturn, only much closer. The rings have small holes all the way around them for long threaded bolts to go through. Two rings on the top of the femur and one down closer to the knee. Running between these is a set of long threaded bolts with nuts on them. The rings are actually fixed, surgically to his femure with pins (think hinge-pins rather than either sewing pins or bowling pins). They go through his skin to the bone. The bone is cut during surgery, not cut all the way through, but all the way around to make it weak enough to break.

The rings are gradually separated, along with them the two halves of the femur, by way of either a set of small computerized motors turning the bolts very slowly over a period of days or a set of manual struts that are turned by hand. The bottom line here is that the leg has to break eventually, and in fact, repeatedly, in order to heal longer than it started.

Got that? Sound like a good idea? I think I might just ask them to cut my leg off and give me a longer prosthetic leg. But I’m remembering to give thanks that I don’t have to make such a choice.

In any case, the machines were installed on the rings, which were installed on his thigh and into his femur. But Ramon has very strong bones, even if they are avian. And the machine didn’t work. I was somehow convinced to take Ramon to the orthopedic hospital/ clinic so they could see why he was in so much pain and also check on his leg, to see if it had broken yet (they didn’t know until they xrayed him).

My brother who has no experience in the arena of home health care, except for when my mom was dying, has been pretty much in charge of Ramon’s care. And he has risen to the challenge. What do families do if they don’t have stay-at-home moms or unemployed parolees to do this kind of thing?

Patrick has been doing some research and he is very gung-ho about an idea he heard about that will help sliding Ramon into the back seat of the car much easier. He heard that if you put a plastic garbage bag on the seat, it makes it much easier to slide them in. Good plan. When I see the bag all spread out on the leather seat, I have my doubts, but between the bag, the TV pillow, bed pillow and the blankets, there isn’t much room, but we get Ramon in.

God bless my brother, he asks, “You alright, Ramon?” nice and loud. You never know what else can go wrong after surgery, Ramon might have gone deaf. He closes the door slowly and gently all but the last 3 inches, which he eyeballs to make sure it doesn’t jam Ramon’s leg. The thing is, it’s only the last inch which matters. And he eyeballed it wrong.

That gentle hip-check to the door drove some metal implement against some bone surface and Ramon sucked his breath in through his teeth. “I fine.”
The leg wasn’t broken, his pin-sites (where the pin goes through all the meat into the bone) were infected and he was in incredible pain. The machine on his leg had been beeping an alarm for the past 12 hours. Our main goal for the visit was to check on the infection, get the xray and help figure out his pain meds.

Can I just pull back here, from the time when Ramon and I are in the examining room? And tell you that I had a not good feeling about this surgery from the time Ramon first discussed it.

I guess I first felt unease when I investigated the doctor who would perform the surgery. I saw that he was an orthopaedic surgeon. Not an orthopedic surgeon. Orthopaedic. We live in Minnesota, the doctor is not British. On a certain bitchy level, when I saw that spelling, I had the same reaction I have when I see a middle aged guy in a corvette convertible.

I put it out of my mind.

My other bias came from never having heard of the hospital in my life. No one I knew had heard of it. No one. I started to wonder if that’s because they recently changed it from “Big Willy’s Leg Emporium” to the stately sounding (I made this up to stay out of trouble, but you get the idea) “Symphony Hospital”.

Jasper

Jasper In The CarHere we are. Walking that line between making friends with who we are and stretching ourselves to be who we can be. I’m good at some things, not so good at others. We all are. But some things, almost everyone gets to be profficient at. Almost everyone.
What Am I talking about here? My son. My beautiful, charming, engaging, charismatic, strong, athletic, artistic, niaive, troubled and incomplete son.

I have thus far made it a policy to not write about my husband or kids. But that policy has made me unable to write at all for the last way too long. I am hoping if I can get this off my chest, I’ll be unblocked. It’s a bit of a genre bender, I can’t make up my mind who I’m talking to.

But some people I’d like to address are the people who think troubled kids are the product of troubled parents (we’ve found the reverse to be true), the people who pass judgement on us for finally medicating our son after 12 not so good years (he had the best year ever, by the way) and the school who refused to accomodate his learning disability (he’s dyslexic, really dyslexic) until he “proved to them that he needed the help” and made him feel stupid. I also wish I could make him understand both how great he is, and how hard it is to be his mom.

He’s like the world’s most beautiful art, like a rock star, like a fashion designer, let me tell you. Let me tell you. He’s a gift. A lesson. A test.

Poetic Attempt

I know a boy, you might know him too

This little boy, there’s so much he can do

He can collect bits of stuff and make them into a rocket
Take those bits of stuff and forget them in his pocket

He can talk to strangers and make them like him

Pet a dog, and it won’t bite him

Make a costume from nothing much

Tie a turban with an expert touch

Wear a sequinned suit to school

And not even care that it’s not cool

He remembers things that never were

picks up cats and makes them purr

He can do flips and land on his feet

He can dance in front of a thousand people and not be scared

He can tell you about the parts of a cell

He can play with little kids, and make them love him

He can speak English and Spanish

But he can hardly read.

Metaphor Attempt

Have you ever known a kid who was just so perfect? So perfectly different, so wonderfully unique that he just didn’t fit in?

A chrome hexagonal peg in a world of square holes and matte black pegs. But when he arrives on the scene all the other pegs turn to look at him, and most of them are jealous. They can’t resist his charms even as he dings himself all up trying to fit into the requisite square holes. It comes so easily to all the other pegs that they don’t even notice themselves slipping in.

My little chrome hex peg is a delight in so many ways.

Children’s Self Help attempt

But he has a shadow. Sometimes it’s bigger than him. And although you wouldn’t think a shadow would be heavy, his sometims gets so heavy that just carrying it through the day is more than he can bear. The shadow is always angry, and it’s mean.

And when it wins the battle for his mind, things get broken, people get hurt. He feels bad afterwords. His throat hurts from screaming and his head hurts from losing control.

His parents help him to keep his shadow small. They try. But the bigger he gets, the bigger the shadow gets. And eventually his parents won’t be able to control it either. They took him to a doctor, to a lot of doctors, actually. Eventually they found two doctors who knew good ways to keep shadows small (because everyone has a shadow, they never completely go a way). One taught him to call his shadow by name (which always helps get someone’s attention).

Calling his shadow by name helped him learn notice when it was getting too big. But still, his shadow was a lot bigger than the average kid’s shadow. And it was heavy. It made him tired and crabby.

The second doctor had medicine that helped to shrink his shadow. Instead of blocking out the sun and causing darkness and badness, his shadow started to look like a shady patch behind him. It made everything easier. Almost everything.

But not reading.

Straight Up

Ever try to go through the day not reading? Most of us read without even knowing it. Here are some things that my fabulous son has to work up a sweat to do, and still doesn’t do very well: operate a combination lock, write a list, read a list, scan the text for the answer (not possible), read the text to begin with, flip through your notebook to find your homework, write down your assignments, find the right books to bring to class or to home, find the right folder or notebook (color coding helps), sneak a peek at your neighbor’s homework, read out loud, write or pass notes, read the directions, look for the street to turn on, read the ingredients, read your email, check out the headlines as you walk by the newspaper, find the cheapest rice…

We’re working on the school. Bringing in the big guns from the Department of Education. But I can’t tell you how tempting it is to pull him out of school and apprentice him out to a seamstress for half the day and a dance school for the rest. Leave him in the Circus at night and let him climb trees in between. But we’re back to that line between stretching a child to be what he can be and allowing him to be what he is. We’re finding it a tough call.