Pack Your Bags!

Here are some ideas of things you might want to bring to the hospital for the week of surgery.

1. Clothes

~It doesn't matter what the weather is like. It's a good idea to bring both warm clothes and cooler outfits. You never know how you will be feeling.

~Bring shirts that either stretch easily over your head or button/zip up the front. Tank tops worked the best for me.

~Get gripper socks. If you don't have any, the hospital will probably give you a pair.

2. Distractions

~music/movies

~possibly a laptop. You most likely won't be conscious enough to use it, and even if you are, you probably won't feel up to it. But you never know.

~anything you haven't seen or heard already. New things will keep your attention longer. For example, my sister put together a video for me of my classmates and friends and wouldn't let me watch it until after surgery. It was a combination of friends giving encouraging words and imitating me passing out. I thought it was hilarious, and it definitely helped take my mind off the pain... that is, until I realized how painful it was to laugh.

3. Toiletries

~Don't forget the little things like shampoo, soap, a toothbrush, etc. for the night before.

4. Pillows (and lots of them)

~The hospital will have enough for you during your stay, but you will definitely need them for the ride home.

Pillows, Pillows, and More Pillows

Learn to bring at least a small pillow with you for a while, especially at certain times.
1) Getting a haircut. My first haircut was pretty painful. Make sure you tell whoever does it about your back, and they will be extra careful. I used a big pillow and a small one, and it was still pretty difficult. That was about a month and a half later. Even now, since my hair is so thick and takes about 2 hours to get cut, it's still painful, but I no longer use pillows.

2) Sitting in the car. Let's face it. Cars were not made for people with backs like ours. A small pillow can really help behind your lower back to ease some of the pressure. It can be very uncomfortable, because normally your body would sink into the curves of the seat. Just stuff that gap with a pillow, and it's all good.

3) Sitting around the house. For a little while after surgery, try putting a pillow under each arm on the arm rests of your chair. This will take a lot of pressure off your back. It definitely helped me.

4) Lying down. You'll definitely need them when lying down for a couple months.

I started out with about 8 or 9 pillows when on my side. Here we go: between the knees, a couple big ones behind my back, a small one in the curve of my back, between my feet, underneath my side (I discovered that one a little later, and it was extremely helpful), one to hold on to and put in between my arms (like sleeping with a stuffed animal), and one underneath my head (of course). I only felt claustrophobic once. Now I use two- a normal one for my head, and one in between my knees.

I have been asked about lying on my stomach. That's a difficult thing to do now, and I certainly wouldn't have done it recently after surgery. It's possible, and I do it once in a while, but it's uncomfortable. But if you stick a pillow underneath your stomach, it levels out your body a little more.

A pillow is a patient's best friend.

Nerves

Because the surgeon had to cut through nerves in my back, after surgery my back was completely numb for several months. In time, though, the numbness wore off from the bottom up. Now after about a year, only my upper back is still slightly numb.

Even though it's numb, it causes pain. If you've ever had any sort of numbness (other than a leg falling asleep or something), you know that when something presses or hits the area, it hurts. When I washed my hair and let it fall on my back, it would actually cause pain. So for a few months, your back will be very sensitive to the touch, but the numbness should eventually decrease.

Fun fact: There are two places on my back (one upper and one lower) where, if you touch it just right, I can actually feel it in another spot on my back.

Nerves take a long time to heal. I can't lift certain things above a certain spot without a sudden pain between my shoulder blades to the base of my neck.

It seems like it will take forever to get the feeling back again, but it will come. Just be careful not to let something poke you hard, like something metal, even after a year. In time, your back will start to feel more and more normal. I can now handle back massages again- and actually enjoy them!

Do or Don't?

*This was BEFORE surgery.

There are certain things you should wait to do a while after your surgery. I'm going to answer some of the questions I've gotten in emails from others who watched my video (which, by the way, if you haven't seen, you should check it out).

1. Driving

I'm thankful I have protective parents, because I wanted to go back to driving before I was ready to. It was about 4 and a half months later that I could, and even then it was difficult. At first, it's good to have someone with you, so they can help look behind you. After all, you can't twist your body. And I don't know about you, but my head only turns so far. But in time, driving won't be a problem at all. The only problem for me now is that since I'm so tall and can't bend, I can barely get in and out of my car!

2. Exercising

That's usually a good thing. Walking is a must. But any more than that, at first, you'll want to be careful. Most importantly, obey your doctor. It was a number of months before I was allowed to jog or anything. But I started lightly working my way back into things. A few push-ups were all I could handle after several months. Elliptical machines are excellent, because they don't really require back muscle. Say good-bye to crunches! I guess they're possible, but definitely not while you're healing. But don't worry, there's another exercise that's just as good. Lie on your back and do slow leg lifts. This can be strenuous on the back, though, so I would recommend that you wait to do this one, too.

3. Studying

Oh, wow, studying. Yeah, not going to happen. That would be horrible on your back. Just explain to your teachers, and they'll understand.

(In case there was any doubt, #3 was sarcasm. But go ahead and try it.)

4. Lifting objects

Your doctor will give you specific instructions on how much you can lift. It will be a while. Don't get discouraged. It was hard for me to hold a toothbrush for a little while, but it gets better. Trust me. Soon enough, your doctor will tell you that you can do things like vacuum, and then you'll regret it! Almost a year later (last semester), I took percussion class, and I discovered that cymbals are a lot heavier than they look. I realized that the next day, when my back was extremely sore. But sometimes it just takes experience. You'll find out what you can or can't do. I speak from experience- listen to your parents and doctor. Don't over do it.

Oh, how I hated that phrase... And now I'm using it.

Million-Dollar Back

There are a couple places that deserve some recognition.

First of all is Shriners Children's Hospital. I don't think I could have been happier at any other hospital. It doesn't even feel like a hospital. There's no smell, and everything is so full of life. The nurses are the best! They establish a relationship with you, and they remember you. I went back recently after a year, and one asked me how band was going on the clarinet. You can tell that they really love their job, and they care about their patients. My surgeon is one of the best at what he does, and he does it as a volunteer.

The rooms are very nice. There is a cafeteria with kid-friendly food. Right next to it is what they call the "mall." It's a wide open space with plenty of things for kids to do, whether it's wheelchair basketball, video games, coloring, or playing the piano (my personal favorite).

But one of the best things about Shriners is that it doesn't cost you anything. And let me tell you, between x-rays, appointments, anesthetics, surgery, hardware, hospital stay- and so much more that goes into it- that's saving a TON of money! I probably have a million-dollar back. They are supported solely by donations.

That brings the second place to mind: the Ronald McDonald House. Only one parent is allowed to stay with the patient during the night in the hospital. My mom and dad would trade places, one staying with me, while the other went to the Ronald McDonald House. They, too, don't charge you for your stay.

These are wonderful places, and you can help me support them! Save the tabs from your cans of pop. You can either drop them off to the nearest Ronald McDonald House, or if you're here at college with me, I'll take them! (I don't drink pop, so that makes it a little difficult for me.) But it's the least I can do for their service to my family and me.

Learn to Laugh

There are certain times in life when you just have to learn to laugh at yourself. My surgery has brought out a few of those moments.

Apparently one day in the hospital I ate a few bites of a pancake. And since I basically had no strength to hold up a fork, my mom fed me. Well, it slipped off the fork and landed on my face. I don't remember it happening, but I do remember telling her that my pillow smelled like syrup. And I couldn't figure out why she was laughing when I told her that.

The other day as I was sitting in class, I dropped my pencil. That wouldn't normally be a problem, except these desks were extremely close together. After about 2 minutes of failed attempts to pick it up, I got out of my chair, squatted down, and reached under my chair, only to find out that I still couldn't reach. So finally, about three others were trying to help me reach my pencil. Then the guy next to me asked me why I don't bend my back. I just had to laugh.

I've had people tell me that when they first met me, they thought I was going to be a snob because of how I sat up so straight. Some have also said they thought I was a model. I thought that was even funnier!

One night during my recovery, my mom wasn't home right away, so my dad made supper. And when you've been recovering in your living room for weeks, you get a little sick of just doing trig homework. So my dad and I made a mashed potato snowman. Recovering makes you creative.

I just recently realized that I have to get off the piano bench to raise or lower it. Because my body is longer now, I can't quite reach the knobs anymore.

People have commented on how I squat down to drink from the drinking fountain, instead of bending over. They really should make those taller... just saying.

You're just going to end up frustrated and embarrassed in life if you don't learn to laugh at yourself every once in a while.

Since then...

Although it is a very extensive surgery, life will go on. I have had some great opportunities and improvements since my spinal fusion.

I was able to play volleyball my first semester of college, which I wasn't expecting to be able to do. And I praise God even more, because He not only allowed me to be well enough to play, but also allowed me to be on the 2nd All-Star team. I felt really bad, because I couldn't react as quickly as usual or dive or anything, and no one knew why. For all they knew, I was just slow and didn't belong on the team. It was frustrating to me at one point, but really, it was amazing that I was on the court period. I also played in the badminton tournament- which was a lot of fun! It was pretty intense. I made it all the way to the championship game, and then lost (and was pretty sore the next day!). So there is hope. You will get better. It just takes time.

I also had my one year doctor's appointment this Christmas break. Everything is looking great! First, I went downstairs to the Gait Lab again for my second visit. (That was where they monitored my movement, flexibility, and balance that I talked about in a previous post.) I could actually enjoy it this time, though, because I knew my surgery was behind me! Then they gave me another breathing test. We found out that my breathing has improved a lot since my surgery, even though I still can't breathe as well as the average person. More x-rays were taken, and my spine looks amazing! I will have one more appointment next year, and my visits to Shriners Children's Hospital will be over.

And the pain from the surgery is almost gone now. Sometimes if I try to move in a way I can't, it will hurt for a second, but that's all. The only issue is with a nerve in my upper back that goes into my neck. I can't carry heavy things or lift something up a certain way without dropping it from the pain. But it will heal, and it's getting there. Unfortunately, I still live with back pain on a daily basis. But it's not from my scoliosis or the surgery. My doctor told me that I have a degenerative disc. So it's nothing that's not fixable.

I can manage to fit into tight spaces to pull a few pranks every now and then, too... (that is, if it's over 18 inches long). My doctor also told me that I can bench press now. Maybe I'll give it a try. 

So don't get caught up in what you can't do. You can always find ways to do things if you really want to.

One Year Later!

November 17, 2010: One year later.

It is incredible for me to look back over this last year and see how far I've come.

I have to say, today I was in an especially good mood. A year ago, I was going into and coming out of surgery. Today, I'm basically healed and having a great time at college.

Someone challenged me to keep my hospital bracelet on for a year. And because I can't turn down a challenge, I wanted to try. And I did. It had an orange plastic covering around it, so it held up pretty well (until near the end when I had to start taping it). People tell me that's gross, but if you think about it, it got washed 43 times a day when I would wash my hands. So it's not. That day I celebrated by cutting off my hospital bracelet.

 

Friends back at home celebrated too. I was surprised to see pictures of my old schoolmates wearing orange bands around their wrists.

I was once again reminded of God's grace in my life. I truly have a lot to be thankful for.



Starting Over

After surgery, you basically have no back muscles. So I felt like I was starting over. Things would happen that I had always taken for granted.

For example, I remember the first time I sneezed. If at all possible, do your best to hold it in, because it will feel like your muscles are jerked and twisted. But it doesn't last long. The first time I had the hiccups was interesting, as well.

Also, be very careful the first time you take a shower after surgery. I had quite the exciting time. My mom had to wash my hair, because I couldn't lift my arms up. But I made my mistake before actually getting into the shower. I managed to get a bathing suit on by myself, and without thinking, I checked in the mirror to make sure the straps in the back weren't tangled. Oops. I saw my scar for the first time. And I immediately turned white and had to lie down. It's also a good idea to get a shower stool to sit on, because I definitely couldn't stand that long, and you really don't want to slip and fall. Getting out was the worst part. I was so cold, I was literally shaking uncontrollably, which was horribly painful. But when you lie back down, you feel so much better.

And then there's the flu. Thankfully, I didn't get it until about 2 and a half to 3 months later. But I think I've had the flu about twice in my entire life. I got it about 8 times from February to July. But the first time I got it after surgery was in February after I had gone back to school. It was the day of the high school play. God gave me the grace to get through the play, even though I was sick all that day and for almost the next week. But my point is that you want to make sure you do everything you can to stay healthy while recovering. For one thing, throwing up is really painful, not to mention difficult because you can't bend your back.

There was also the first time going through an airport scanner. Actually, that was my first time ever. But don't worry, I've flown many times since then, and my back doesn't set it off.

Even brushing my teeth was a work-out for my back. You really use your back muscles in almost everything you do!

*First time climbing a rock bigger than me. :D (8 months later)

So it takes time getting used to things again. You feel like you're starting over... learning to sit, walk, stand up, and the list goes on. But it makes you appreciate everything that you used to do without thinking twice.

The Hand Behind It All

I'm going to tell you the best advice I could ever give you about this surgery... about how I really got through it... about how it's possible to have such joy, despite physical hardships.

Music and sports were basically everything to me. It's what I did, what I thought about, what I loved. I had plans and dreams. I was planning on competing in a concerto competition, I wanted to join a volleyball league, there were other competitions I was planning on being a part of, and the list goes on. When I found out about my need for surgery, none of those things were going to happen anymore.

If you think about it, what will your life consist of if the things you love and live for are taken away? Would you have any reason at all to be happy? I realized that nothing- absolutely nothing- on earth satisfies. But there is one who does.

God loves me. He loves you, too. In fact, He loves us so much that He gave His only Son to die for us. We are human, and humans do wrong. We all know that punishment is associated with doing wrong. Since we have all done wrong at some point in life, we deserve to go to hell. Why? Because God is perfect and holy. He doesn't tolerate sin. But this is the awesome part. Jesus Christ died as our substitute, so that we can be right with God and live with Him forever in heaven some day. He not only died for us, but He rose again! He has power over death, and He has the power to save us from our sinful nature and our destiny of hell. It's simply up to you to choose whether you will accept His free gift of love and put your trust in Him.

As for me, I have made that decision to turn from my sin and to God. And I know that no matter what happens in life, He is always with me to comfort me, give me peace, and give me joy that nothing else can offer. I know for sure that when I die, I will live for all eternity with God in heaven. And that gives me hope, and a reason to live- and it can for you too!

God is so good. What I used to view as a physical weakness, I now see as a gift from God. He gave me peace before surgery, safety during it, and strength after it. He chose me to be born with scoliosis, and for that, I am so grateful! In my weakness, He is strong.

Have a Tip

If you are going to have this surgery, or any surgery, here are some things you might want to consider.

Get to know your nurses. They really do care! I had the greatest nurses ever! (Not to mention the fact that they shared my love for Snoopy and the Peanuts gang!) Seriously- you are going to be with these people for a week. You had better like them. Be kind to them... even little things like saying thank you and not giving them a hard time about all the pain you're in. They're doing their best to make you as comfortable as possible.

Choose the date of the surgery during a month that is not a winter one. I am naturally cold all the time, and winters in Indiana make me shiver uncontrollably. I would tense up and be in extreme pain when outside. Also, I would have frequent muscle spasms. So if possible, I assume that around spring time would be the best. I was also unable to go outside to walk, which is really important to keep up while recovering. Going back and forth between the kitchen and living room gets old pretty quickly!

I mentioned this earlier, but try to have the surgery at a hospital near friends and family so they can come see you. Visitors really make time fly.

Get clothes that are practical for having surgery. I didn't like having a lot touching me like long pants, and sometimes even blankets. But it's different for everyone. One thing that really worked was a tanktop. They are so easy to get on, and then if you get cold, you can just put on a zip-up sweatshirt or something. You're not really going to be able to raise your arms up very easily, so make it as easy and painless as possible.

As I think of more things, I will continue to add to the list of tips.

Just Keep Going

Times will get rough. But you have to keep going. One of the best things you can do for yourself is to set goals and have a positive attitude.

I went back to school about 2 weeks after surgery. They were definitely not full days, or even half days, but one or two hours. And that was more than enough. Many people go back after 6 weeks, which is good. But recovering in my living room day after day was a little too monotonous. After all, I had watched every episode of Charlie Brown and Pink Panther that I owned. Anyway, 2 weeks is a little soon, and I wouldn't necessarily recommend it. But being around lots of people took my mind off the pain.

One goal for me was to be there for the school's Christmas concert 3 weeks after surgery. And as the high school choir accompanist, I had made up my mind to accompany. We prayed that I would have the strength to do it. So on December 8, 2009, God miraculously allowed me to accompany the choir at the concert. I couldn't play quite as loudly as I usually do because of the pain. But it was worth it. There's not a whole lot that I love doing more than playing for the choir. After the concert, I went home in quite a bit more pain than usual, and immediately laid down, which eased the pain.

I was able to recover more over Christmas break, and by January, I was going back to school for full days. I'm so thankful for compassionate and understanding teachers and principal. I could go lie down any time I needed to during the day.

Near the end of January, I jumped back into cheerleading- very lightly. My coach was so understanding, and she would let me sit on the sidelines when I couldn't stand up any longer. But it kept me active, and I think it's so important to stay active while recovering. You just have to be extremely careful. I really wanted to go back to flying, but that was out of the question. I was also able to get back into the splits in February- that is, until my mom saw it and told me never to do it again, or at least until I had the doctor's approval. So I was back into things full speed, and I just had to keep going.

Day 6: Going Home!

Sunday, November 22, 2009:

Today was the day! It was an exciting morning. I was wheeled downstairs to find an RV waiting outside for me. Some friends of ours let us borrow it for the ride home- definitely the best thing I could have ridden in for the three hour drive! And better yet, my sister was there waiting for me. I slept on a very comfortable bed with tons of pillows the entire ride home. I have heard from several people that the ride home is extremely painful, but thanks to our friends, I slept through the whole thing!

When I got home, it was amazing to see how much I improved from then on. It was different, because I didn't have all the nurses constantly around checking my vitals and making sure everything was right. But my parents and sister did a great job of being there for me and helping me out. My first visitors showed up that night after church- my French teacher and his wife. It was so nice to see other people I knew again! (I felt like I had been gone forever.)

We kept a hospital bed in the living room, along with a reclining chair, so I didn't have to try going up all the stairs to get to my room. Soon the shelves became full of cards, flowers, and Snoopy gifts.

The day flew by, and it was so good to be home.

The Results Are In

A lot changed about me after surgery.

Most obviously, I have a straighter spine. My curves went from 52 and 57 degrees to about 22 and 20 degrees.

I also have the addition of two rods and 18 screws in my back. That means that I can no longer bend or twist my back. It really bothered me at first, but not for long. It just means that I have really good posture and I don't have to work for it. People often compliment my posture, and if I have time, I will explain. If it's in passing, I just say thanks and pretend that I actually have the other option of slouching.

I also grew about an inch and a half. I was really hoping for 6 feet, but I'm just about an inch short. Oh well.

If I ever wear a shirt with a little lower back, of course I'm going to wear my hair up. I didn't go through all that not to show off my scar!

One change that I'm still trying to get used to is when the weather changes. Especially rain. I get pretty stiff and sore on those days. But I have gotten pretty good at predicting the rain! Sometimes I wonder if I was called to be a meteorologist...

The Big Zipper

DISCLAIMER: This post is not for the weak of stomach. (Although, if I can handle it, I bet you can too.)

So, you want to know what really goes on during a spinal fusion? I thought so. I'll do my best not to be very graphic.

You can have an anterior or posterior spinal fusion. Anterior goes through the front, while posterior goes through the back. I had posterior. The surgeon stretches the spine with his cranking device, which straightens it. He takes the bone graft from your hip and uses it to fuse your vertebrae together. This will make your hip very sore for a little while. It usually takes anywhere from 1-2 years to completely harden, or "set." He puts a titanium rod on each side of the spine and screws them in. These rods are permanent. If you wanted them removed, you would have to basically break the fused bone, and the whole thing would've been pointless. And there you have it. Seven hours later, it's all over with.

I was left with an awesome 18-inch scar on my back. They call it:

The Big Zipper!

I also had flat back syndrome. Basically, my lower back was straight, and it didn't have the inward curve it was supposed to have. I had never even noticed it. So my surgeon reduced two curves, and gave me an additional one!

For a few months after surgery, I was so embarrassed about the way I looked. My new curve made my ribs stick out, and I felt like the curve was way too much. But as I healed, I gained my muscle back, and I could support myself. It still looks a little funny to me, but everyone always says that you can't even tell. Either way, it's the way I am now, and pouting over something so insignificant is not going to get me anywhere in life (except depressed).

It has been just over a year now, and my scar is sadly getting more difficult to notice. But I'm so proud of it!

In the left picture, you can see the tape over my scar. I would recommend that you leave it on as long as you can. They will eventually fall off in the shower or something. If you try to pull them off early, it can be very painful.

So now you know. That was about 7 or 8 hours' worth in several paragraphs. I would personally like to thank the person who was brave enough (if brave is the right word) to undergo the very first spinal fusion ever.

Day 5: 180

Saturday, November 21, 2009:

Two good memories from today. First of all, it was the first time I could eat some solid food, and actually even feel hungry for it. And what better to eat than a sandwich from Panera? It was definitely a good day.

The second thing I remember was asking my mom if I could call my principal, who was driving the school bus back from the college trip that day. I had to let him know that I had gained almost an inch and a half from this surgery! Of course, it makes me a little nervous to think about this phone call, because the only part I remember was asking how the guys did in the basketball tournament and finding out that they had gotten second... I think. So, I have no idea what I said, but I bet it was interesting.

I was feeling some good improvements that day. It was like I had taken a 180 turn around compared to the day before! I still had a long road ahead of me, but God is so good.

Day 4: Up

Friday, November 20, 2009:

My own clothes, and now my own room? It doesn't get much better than that! At first, I had the most adorable little roommate. But my nurses realized that I would need a lot of rest, so I was moved. I only remember that she drew me a picture, and right after I looked at it, I was out again.

That afternoon, it was time to get my hair washed. I would have never guessed how much better that made me feel! It was painful, because they had to lift my head to put my hair in the water. But I'm so thankful that we have ways of doing it while lying down! Something that really helped me when I got home was a little inflatable hair washer with a spray nozzle. It always helps to feel clean.

Then there were visitors! The moms of two of my friends on the college trip came to see me. It really helped pass the time. I even got to go downstairs in my wheelchair to eat in the cafeteria with them. Tip: If you have the choice, choose to have your surgery at a time and place that visitors can come frequently. It really helps. Otherwise, it may end up being the longest week of your life!

That night, my mom and I made at least a couple attempts to watch a movie. Disney's "Up" had recently come out on DVD, so we brought that along. But within a few minutes I was asleep. I think my nurses enjoyed watching it, though!

I was discouraged to find out that the surgery hadn't untwisted my chest. It still caves in on the right side, and my upper back is still uneven. After all, that's what I really wanted fixed. But when I think about it, I have everything I need. I have two good eyes that see, ears that hear, hands and feet that function, a brain that can comprehend... Who cares if I'm twisted? God has blessed me with a body that He designed, one that was meant for me. It's just right.

Paper Mache #5

On day 3, Thursday, I received some unexpected news. My doctor wanted me to get fitted for another back brace. I wanted to cry, but my eyes were still so swollen that I couldn't. They wheeled me downstairs to be fitted.

But there was one problem I hadn't thought about. How on earth were they going to make a mold of me when I could barely even sit up?

In this picture, you can see a very thin metal rod (about an inch or two wide). The brace doctor asked me if I wanted to lie on that, or stand up. I had no earthly idea how I would get on that when it was painful enough to lie on a bed of pillows. So I chose to stand up and hold on to the bar. I have no idea how long it took. I felt so weak that I couldn't even keep my eyes open. But soon it was over with, and back to my room I went while they turned the paper mache of me into my brace.

There was another problem. My whole body was still swollen. That meant that when I tried it on the next day, it was too big. And when I got home, it was even bigger! When I started healing, though, I was thankful for my brace, as much as I didn't want to wear it. It helped support me, since I didn't have the back muscle to do that. I ended up wearing it for seven months (until July). I was very self-conscious in this brace at first because of how big it was on me. I could wear only a couple of my shirts over it. But it helped, and I got over it. If a brace is all I'm dealing with, I have a lot to be thankful for.

Day 3: One Step at a Time

Thursday, November 19, 2009:

Today was somewhat better. First of all, you automatically feel better in your own clothes, opposed to a gown. Also, I had a few of the 8 tubes taken out! No more getting tangled up every time I rolled over. I had a breathing tube, two IV's in each hand, a tube in my neck (I have no idea why), and a drain in my back (and a catheter, of course). Then, on top of all that, I got to walk for the first time!

I was wheeled out to the hallway, where all the passing nurses would cheer me on. Then I stood up, and took slow baby steps.

Just remember. It doesn't all happen at once. You have to be very patient with your recovery and take it one step at a time.

Day 2: Log Rollin' and Singin' in the Rain

Wednesday, November 18, 2009:

I had absolutely no concept of time that week in the hospital. When I looked at the clock and read 7:30, I was extremely disappointed to find out it was am, not pm. But the day went on, regardless of what time I thought it was.

Today was the day I got to sit up in a chair! I was not thrilled. In fact, I was really nervous. They sat me up, and it was like all my weight shifted and it felt hard to stay upright. Then a problem: how to stand up. I never realized that you use back muscles to stand up. I had to learn to use completely leg muscles. If I tried to use my back, or even flex the muscles a tiny bit, I regretted it. But I was up, and then the nurses helped me sit in a chair padded with tons of pillows. It really felt like an accomplishment. I was making progress, one step at a time.

Most of the swelling had gone down, and that alone made me feel a little better. It's probably a good idea to bring a computer and some music. I tried listening to my iPod, but the extra noise made me feel like I was going to start hyperventilating or something. It also didn't help that I was listening to Singin' in the Rain. Just a little tip: if you bring music, you'll probably want to listen to soft, calming music... but everyone's different. Soon I had had enough, and it was back to the bed.

If you have had this surgery, then you know all about the log roll. In order to keep yourself from getting bed sores, the nurses have to roll you over every 1-2 hours, but because of the pain, I needed it every half an hour. While in bed, I was absolutely stuffed and surrounded by pillows. I would hold on to the railing, while the nurses would pull the pillows out from behind my back, and then they would help me roll over to my other side and quickly stuff the pillows behind me again. I still don't know how I feel about this log comparison. But either way, it got the job done. I couldn't lie on my back for at least a month, so I rolled to the other side. It's unusual for people not to be able to lie on their backs. But my doctor gave me an inward curve of my spine because I had flat back syndrome.

VERY IMPORTANT: Make sure you always have the nurse's call button before they leave the room! Lesson learned...

Man Up!

Tuesday, November 17, 2009:

The morning began bright and early at 4:30. After the kind nurse explained in full detail everything that was about to happen to me, I was wheeled to Pre-Op for a little pre-surgery adventure. I felt calm, with only occasional butterflies in my stomach... that is, until I heard screaming on the other side of the curtain next to me. Then, someone told me that they were going to put these electrodes in my head to monitor my nervous system and not to be worried if we see streaks of blood in my hair. (They told this to the girl who passed out after getting her ears pierced.) Then they instructed me how to move my feet when they tell me to during the surgery, because of how close they would be working to my spinal cord. Thankfully, I don't remember them actually doing any of this to me. Finally, it was time. The very last thing I remember? I reminded my mom to find out how I did on my trig test. Then I was out.

7 hours later...

I saw a bright light. Unfortunately, it was just the light from the x-ray machine. I heard the nurses count to three, and I suddenly felt like I was dropped on the x-ray table. Later, I found myself standing up with my arms crossed getting a standing x-ray, but only for a second before I was out again.

Soon, I woke up in ICU, while the nurses were taking my breathing tube out. I felt like I couldn't breathe because my face was so swollen. Apparently, I made the ICU quote of the day: "The worst part is over... now I just need to man up."

My throat was very sore, but I wasn't allowed to drink anything. But my awesome nurses let me have water with a little square sponge (which actually took care of that problem). Then I remember my nurse telling me many times to just breathe deeply, because apparently I was hyperventilating and didn't even realize it.

I couldn't describe the feeling even if I had to, but I'll make an attempt, because for me, waking up from surgery was the part I was mostly scared about. I think I was too out of it from the medicine to really feel the pain I should have been in. But I felt tense, like I couldn't move my whole trunk area and legs- almost like I had been hit by something really big, but I didn't really feel the pain. Thank goodness for medicine! Except they couldn't give me the really good, strong medicine, because I'm allergic to a lot of medicines.

That night I had a fever, which is fairly common right after surgery. I only remember being extremely hot whenever I woke up, which didn't help the way I felt overall.

That was my first day in ICU in a nutshell. I pretty much slept through a lot of it, even though I felt like I was awake for the whole day. For any of you who are nervous about having your surgery, don't be. Although I can't say it's easy, because it's not, the nurses know how to make you as comfortable as possible, the medicine will help, and you will sleep a lot. So the worst part wasn't quite over with, but I did my best to "man up" anyway.

Oh, the Suspense...

Monday, November 16, 2009:

It was time to say goodbye to all my friends. They were going on a week-long college trip, the same week I was going to have my surgery. So I went to school for half of the day. It felt like I was leaving forever. My one memory from that time seems like yesterday, when my teacher had both a guy and a girl pray for me. I don't really remember all that they said, but I do remember crying through almost the whole thing. But I knew God was in control. And He answered those prayers. After that class, I gave all the final hugs and told my class I would come back over 6 feet tall. I also had to tell my sister (my best friend) goodbye. Because H1N1 was going around at the time, no visitors under 18 years were allowed into the hospital. We stopped by home to grab suitcases when I received a phone call from my former pastor. He encouraged and prayed for me, which I will never forget. And then it was off to Chicago, where my adventure began!

After the three-hour ride, we arrived at Shriners Children's Hospital. I was participating in a case study, so I spent the afternoon in the Gait Lab. After being attached to a bunch of little metal objects, I was monitored for my flexibility and symmetry (or should I say asymmetry). I walked back and forth, leaned side to side, and touched my toes, while the computer picked up the little things they attached to me. Then I was hooked up to a harness to test my balance. That part was like playing Wii Fit. Except if I moved, so did the wall surrounding me or the floor underneath me.

Then it was time for some breathing tests. A huge machine monitored my breathing before and after I used an inhaler. Needless to say, I left there feeling a little dizzy.

That evening, my music pastor came to see me, and then it was time to get ready for the next morning... until I found the hospital's piano, where I spent the rest of the evening.

I thought I would be more nervous than I was. I definitely was nervous, especially since it was my first surgery, but it still amazes me how God gave me such peace that night. I knew that no matter what happened or how I felt, it was going to be all right.

The suspenseful day had quickly come to an end. And the next morning came even faster.

Watch Your Back!

I didn't see it coming. I knew the curves in my spine were getting worse with almost every appointment, but I didn't think it would happen to me. Finally, during my sophomore year of high school, on what seemed like my routine Wednesday morning check-up, we heard the words we never imagined we would hear... "You need surgery." My dad was serving in Iraq at the time, so the news hit us a little harder. In the back of my mind, I always knew surgery was a possibility, but I quickly pushed those thoughts aside.

It wasn't an emergency, so life went on as usual. Near the beginning of my junior year, during volleyball season, I began having pain from the back of my head down to my lower back. Heat patches and heating pads became my friends. Despite the pain, I had a great year filled with a ton of memories.

Then came my most memorable year, my senior year. Surgery was finally scheduled for November 17, 2009 (after volleyball season), as it became obvious to my parents and me that it was necessary. I developed breathing problems, which made it more difficult to play volleyball.

So as the time drew closer, people were becoming even more supportive and encouraging. They prayed for me and encouraged me. A couple weeks before the surgery, we had a party with teachers and friends to play some final games of volleyball!

And before I knew it, the day had arrived...

Twists and Turns

I've had a few twists and turns, both physically and emotionally, over the years. Every doctor's appointment (which would happen every couple of months) brought very different results. Over time, though, my back was getting worse, and it was becoming noticeable to me.

Physical effects of scoliosis:

Some effects are common to just about every scoliosis patient. The right shoulder blade protrudes, making the shoulders uneven. The hips and ribs become twisted and uneven, as well. When you bend over, a definite hump on the lower, left side of your back becomes obvious, along with one on your upper right side. When sitting back against a chair or wall, only certain parts of the back may touch. Also, the right side of your chest "caves" in. Breathing problems are associated with severe cases of scoliosis. 


At one point I struggled with accepting the way I felt and looked. But finally, I realized that these "twists" and "turns" in my life were not accidents. God specifically chose me to have scoliosis, and that makes me special. Romans 8:28 says that "we know that all things work together for good to them that love God." Psalm 139:14 tells us that we are "fearfully and wonderfully made," and that is an awesome thought! God did not make a mistake when He made me. I am privileged to take what some people think of as bad luck, and use it to praise my wonderful God!

I embrace the way I am now. If I look twisted and uneven, that's who I am! Think about it. Every "normal" person's spine is straight. Mine simply has a creative twist.

Get That Spine in Line!

It was a little rough those first few days in the brace. I felt like I could barely breathe that day, and I cried because it made my body red, purple, and very sore. But I was able to sleep fairly well that night, and soon it became normal to me.

Because I grew so much, I ended up going through five braces over a six-year period. After a few weeks of getting used to it, I soon thought my brace was the coolest thing ever. My friends would knock on it, it would protect me in dodge ball, and best of all, no one could tickle me. I even had my classmates and teachers sign it with a permanent marker.

All went fairly smoothly until about 7th grade. I would wake up in the middle of the night with horrible pain shooting down my hip and right leg, and over time, my thigh started going numb. We found out that I had grown out of my brace, and it was pinching the nerve in my hip. My next brace had a flattering bump over each hip. Needless to say, I didn't think wearing a brace was so cool anymore, especially since we had recently moved. I have to admit, I slacked off on wearing it like I was supposed to. But the pain eventually eased, and I was back to a regular brace after growing out of that one.

About the brace:

It goes from just below the hips to underneath the arm pits. There are a few little holes and a "window" on the left side so your body can breathe. It stays tight with three horizontal Velcro straps on the back. Getting fitted for the brace is an interesting process. I've had it done two different ways.

1) The doctor takes a bunch of measurements and then makes the brace. You try it on, and he makes the necessary adjustments. Fairly fast and easy.

2) This is the fun one. You basically feel like a giant paper mache. First, you put on a long, tight t-shirt. Then the doctor wraps you up in the goopy paper. It hardens quickly, and he cuts it open in the back and there's the mold.

When you get your brace, you have to wear the long, tight, cotton tanktops underneath it, so it won't rub your skin raw. Tip: It's better to get special ones with a flap under the left arm, because the brace extends higher on that side and tends to rub it. 

What to wear over the brace:

Around the house, things like warm-up pants and a light t-shirt were the best for me. You can get extremely hot in a brace, so the lighter, the better. Jeans are more difficult to fit over it, but it's possible.

Don't wear your favorite shirts over it. The Velcro on the straps put holes in many of my shirts.

Make it as fun as possible! Draw pictures, get a patterned brace, do whatever you want to make it more enjoyable to wear.

Diagnosis: Scoliosis

*Age 17 with 52 and 57 degree curves.

At age 6, my parents took me to the doctor after I had told them my back had been hurting. The x-rays led to an easy diagnosis: idiopathic scoliosis. I had a small curve of 18 degrees. Nothing needed to be done, except to wait and watch it carefully.

Life went on as usual, and I was in 5th grade when the doctor noticed that my curve had progressed to two curves of 30 and 23 degrees. It was time to try to stop those curves. So then began those years of wearing my Boston back brace, 23 hours a day.

It's not surprising that I have scoliosis, because it runs in the family, as it does in most cases. More people need to be aware of scoliosis to prevent possible serious health problems in the future. Many statistics show that out of 100 people, 3-5 will have scoliosis. It doesn't seem like many, but I ended up being one of them. And you could be too.

A Crooked Individual

I was born with scoliosis, a curvature of the spine. But scoliosis does not control my life. It simply doesn't have to. So I'm going to tell you a little bit about who I am, regardless of how crooked my spine is.

I was also born a military brat, and that has brought with it some great experiences, including living near Washington, D.C. Most of my years in school took place at a Christian school, although I did home school for five years.

*My family at my Dad's return from Iraq

*My sister (Emily) and me

Music has been my passion since 3rd grade. Piano, organ, clarinet, and flute are the four main instruments I play, and with my music eduation major, I'm working on percussion, trombone, and oboe, as well (with more to come!). Sports have also been a favorite hobby of mine. If I wasn't playing volleyball, I was probably thinking about it. I love the Peanuts comics and Pink Panther cartoons. My favorite foods are PopTarts, pancakes, and peanutbutter and goulash sandwiches. (Yes, the peanutbutter and goulash go on the same sandwich.)

I love animals. I have two dogs, Chloe and Kara. They are Bichon Frises. 

All this to say, I love having fun and making great memories through different experiences. Many people think that scoliosis is a curse that only they understand and have to go through. Well, it's not. In fact, I love my scoliosis! Although it doesn't control me, in a way it defines me. So when you feel like life has thrown you a curve... brace yourself!