Surgery is imminent

We got a call from the surgeon that instead of on the 19th when it was scheduled, I now will be having back surgery this coming Monday. This is an informative post for family and friends. If you don't want to know the details of intensive back surgery, stop here. While I appreciate that some of you may feel the need to call and find out more in-depth, but I beg of you to wait. I get a million and a half phone calls already. Either leave you comments on the blog, my facebook page, or just email me. That way I can actually get to all of you without going insane.

In the accident I fractured the L1 and L2 vertebrae (L stands for Lumbar, if you're looking at the picture). Those vertebrae were pretty messed up, leaving them in shards that eventually formed a mass of bone that acts as a support. Immediately after the accident, a rod and several pins were stuck up my spine to stabilize the spine. Other than that, they left my spine alone because I was in critical condition already. This rod isn't a perfect solution, and it may be removed/fused at some point, but this isn't that surgery.

What is happening is that the fragments of my vertebrae are pushing up against the spinal chord. This may be responsible for the back/leg pain I have been having, as well as the reason my left leg hasn't returned yet.

The surgery will involve relieving the pressure these fragments are putting on the nerves of the spinal chord. Since the damage to the chord is on the front, they will have to go in from the front, which is going to leave me a nice surgical scar, going just under my ribline, to add to my collection. Moving aside all my innards, they will remove the fragments of bone and fuse a support onto the area, taking the place of the vertebrae they just removed.

The major reason for this surgery is preventative: if I were to have an accident of some kind in the future, this pressure on the nerves could be enough so that I loose the control of my right leg that I've been working so hard to get back. There is the possibility that I could gain some of my left leg back, though I'm not holding my breath. I'm just hoping to reduce the worst of what has already happened.

There is a lot of good that could come from this surgery, though like any surgery it has its risks. But I'm not focusing on those right now. I'm keeping my eye on the ball to what could happen in the future.

The Turtle Swims Again

Today for the first time I swam.

I'd been swimming for a few brief moments before and after therapy in the therapy pool but it was few and far between. Again I am eternally grateful to my mother; she signed up for a gym with an amazing pool system and now I am able to swim free without constraint.

They actually have three pools. They use a mixture of chlorine and salt water, reducing the amount of chemicals they have to use. The salt water also makes for an amazing swimming experience. They have three areas: a lap swim pool kept at normal pool temp, a therapy pool kept at 96 degrees, and a hot tub which is to say the least really hot. They also have an outdoor pool area which they are in the process of opening up. This has several areas and a water slide. I would give almost anything to go on the water slide, but with a flight of stairs it is not handicap accessible (I guess they figure if you're handicapped, you have no business going down a water slide).

I swam in the therapy pool and had an amazing time. Not limited by my leg in the least, I swam many laps back and forth. It did sort of drag in the water like a log, but my right leg more than made up for it. Instead of being limited, I was light as a feather, swimming through the water with a grace I never managed on land (even with two legs). I felt strong, I felt nearly whole again, and I forgot that I had ever doubted my abilities.

Clothes

I finally got to where I'm going. But the more time I spend here the more I am forced to look back.

I unpacked all my clothes today. A mix of stuff from when I came here and everything I've picked up along the way.

There's a whole ton of pajama pants. These are from the Kernan and from the nursing home. These where when I couldn't dress myself and had to have help with the most minute task. These were comfy and easy to get over legs that don't want to help. They were also easy to remove if my bowels decided they weren't going to cooperate either.

I have a random assortment of tees. I only came with two or three sets of clothes, only expecting to stay about a week and a half. The rest are struck with landmarks of my extended family's past. There are shirts from blood drives in places I've never heard of. There is a shirt from a birthday party of an uncle, who's birthday bash I never attended. Gifts from family when i was in need. I needed to be clothed when I was naked and they gave me the shirt off their backs.

There are endless random socks. Some are loaned, some where newly bought. I have some thick wool socks because it got so cold in the nursing home. I spent many days there, looking out on the feet of snow that descended when I was there. I had few visitors and the staff was forced to stay there because it wasn't safe to drive. I never thought socks would bring back memories.

There are a few pairs of workout shorts. These were when I was moved to Kennedy. I was finally put in a PT program that forced me to work hard, driving to the point where I was sweating again (weird as it sounds, this is one of the happiest times).

And finally there are the jeans. Back when I had two legs these were all I wore; wearing a pear of khakis made me feel strange. Having not worn them for some time, they felt constraining and uncomfortable. They were something from a past life. But I felt normal wearing them again. They were when I was just starting to get out into the community a little bit. They represented a little bit of the freedom that had been stolen from me and that I'm now just starting to get back.

Where does all this mess of mismatched memories and clothes leave me? With a mess and more laundry that I have to do.

Phone Calls

I want to say in advance that I have been playing phone tag with many of my readers (since most of my readers are family or friends). This is partly an explanation to all of you for why I don't answer your calls or call you back.

I have to say that being stuck in a bed all day sucks. This should be obvious, but it also presents its own challenges. I get a TON of phone calls during the day, from concerned family, friends, and distant acquaintances. (Now I JUST want to say, I value the fact that I have a support network of this kind. I consider myself extremely lucky)

Since I don't carry my phone with me to therapy (who needs THAT kind of interruption) I generally keep it at the side of my bed. When I am here it seems like my phone never stops ringing. I want to give the example of this past Sunday. I woke up around 10 oclock since it was my one day off. I ate lunch around 11:30. It was near the end of my lunch that I got a call from a friend out in Colorado. I then spent the better part of the next 7 hours on the phone. When that friend was winding down, I got a call from my mother. During her call I got another call from Colorado. and so on and so on. I did have some breaks between, but my day of rest included mostly catching people up on my situation.

Others, knowing my schedule quite well, call me after I'm done with therapy during the day. While I love you all, there are limits to how much I really want to talk to people. And during the middle of a tiring week after a tiring day, you are not my highest priority. Imagine working double shifts everyday, six days a week. Then imagine everyone you know calling to check up on you because you are working so hard. So don't be offended if on a particular day, I don't really want to talk to you.

Like I said, I am honored that so many people care about me. I really really am. But now you might be able to understand why you're not hearing from me all the time.

Freedom

I'm extremely excited about my release this Saturday. I'm finally being released into a place where I don't have to get a whole bunch of paperwork, go through an elevator, past security guards, to cross the street with a chaperon. I'm am so sick of hospital beds, hospital food, and the sterile feel of the hospital. While I still have therapy, a large part of my routine will now be up to me. They see me as fit enough to return home and care for myself: I transfer myself in and out of bed, I can take all my pills on time, I can wipe my own ass. I am so glad to be leaving!

This is not all joyous; I will miss the people who helped me get here. As perhaps my favorite nurse checked off that I knew what the side effects/times of my pills were, I was sad that I wouldn't see her for a while (it was the last time I would see her before I was discharged). I will come and visit, but it's not the same as having someone there, able to talk to you at the push of a button. Here at Kennedy I have been extremely lucky in that I like all of my nurses and all of my therapists. At other places there were definitely people I didn't like at all on staff. Here I can only think of people who I didn't know that well or I didn't know at all.

I'll be going to my aunt and uncle's place. They've set up a mini-apartment down in their basement(to be honest it's actually bigger than my first apartment. And nicer too). It'll be good just to sleep in a normal bed again, surrounded by normal things. I'm looking forward to not having to listen to the constant buzz of people and machines.

This is the real test of all my skills. I'll see if I'm really able to use any of them in the real world. I'm pretty confident that things will go well. I see blue skies in my future.

Escalators

Yesterday I rode up and down the escalators with my mother and two of my therapist. Let me tell you, it was quite an experience.

The actual riding up and down was quite boring to tell you the truth. You just find a sweet spot so that all four wheels are balanced on a step and then you hold on to the moving sides. You are always looking uphill (so that you don't fall out of the chair) no matter if you are going up or down the escalator. I'd done this once before with my therapists but this was my first time with my mom. It was really easy and the skill that I was supposedly "learning" was mastered in one or two tries.

The interesting part of the whole experience was seeing everyone's reaction! Now granted they have some reason. Honestly, how often do you see someone in a wheelchair riding up and down an escalator? We did this in John's Hopkins at about 2:00 in the afternoon. So not horribly busy but there was a steady trickle of people.

Some looked on with mild interest. I probably would have too! Here I was, a 20 year old in a wheelchair being surrounded by two people on either side. I'm guessing they were simply puzzled as to why someone would try such a feat.

Others looked scandalized. Clearly they thought that surely someone would have banned wheelchairs from clogging up the escalators (though we only went up when there was a large gap in people).

The best group of people were the people who thought they were being helpful. Clearly it occurred to people that we simply couldn't find the elevator and figured the escalator was our only option (not quite as silly as it sounds. Hopkins can be very maze-like). What amazed me though were the shear number of people who thought we were in such a predicament. They asked us "Did you know that you can use the elevator, right over there?" We tried not to laugh, and my therapists calmly answered "No, were actually practicing wheelchair skills." By about the fourth or fifth time it was pretty hillarious. I predicted as we were about to go down again that we would be asked if we knew that they elevators were close by; and sure enough, almost as soon as we got on, we were asked this question again. In total, eight separate people asked us. We must have looked desperate or lost or something.

This is not really a very useful skill most of the time. It will come in handy every once in a while, say if the elevator is broken and we have to use the escalator. Other than that, this skill is more along the line of party trick. But it's cool to know that I can do it.

One other thing I learned by sheer coincidence: one of the fastest way to find the elevator is to ride the escalator. People will then have a driving need to point out where it is.

Alternative Therapies: Massage

There are several alternative therapies offered here at Kennedy Krieger. I signed up for all of them in addition to all my usual therapies. I figured why not? I may as well. I would be able to try them out and they may even help my recovery.

The first and easiest therapy was massage. Frankly speaking, I wouldn't have said no to a massage even if I wasn't in a hospital. Working the long hours that I am, there is nothing better on the muscles than having a massage.

Depending on the masseuse, some weeks were better than others. I've seen a total of three different people during massage therapy, all with varying specialties and areas where they did the most good. The first focused on my lower back and shoulders. She was good at relieving the tension of days filled with tiring work. My muscles were sore and in dire need of care. And this she did marvoulously.

The second masseuse was far less direct. She spent more time on my feet and my legs. She slowly worked up the body and used more pressure in certain spots than active massage. She pressed on matching sore spots on my feet and back and the harder she pressed on both, the better they both felt. She also used used a weird heat release. She pressed on certain spots and suddenly my skin felt warmer and warmer, getting really hot. She then proceeded to trace this heat down my back, through my legs, and finally, releasing it at my feet. I don't understand how or what she did, but it was amazing feeling. The combination of pressure, active massage, and heat left me feeling amazing. To quote my facebook status of the day:

I just got a massage and my body feels like Jello!.

A friend asked me what type of Jello I was. The answer, as should be obvious from this blog was Lime (it's not easy being green).

I must admit that something macho in me resisted the idea of getting massage. But I can now freely say that when I leave here I'll go out and get a massage on my own dime. And advise you to do the same.