II Corinthians 12:9-10

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities... for Christ's sake: for when I am weak, then am I strong."
II Corinthians 12:9-10

Thursday, August 25, 2011

FAQ's About Scoliosis Surgery

I get lots of emails with questions that everyone seems to have, and now that I think of it, I had most of them, too. So I'm just going to list some of them and answer them to the best of my ability. (Just remember that it's not always the same for every person.)

Q: How did you know when you were ready for surgery?
A: At the time that I was told I needed surgery, I honestly felt like I could live the rest of my life without having it and feel fine. Within the next year or so, I developed breathing problems and back pain, so at that point, we knew I needed it. But it was still an incredibly difficult decision. We knew, though, that when I get older, I could have a lot of serious problems if it wasn't fixed. We had to come to the point where we realized that God is in control, and He would take care of me through the surgery (which He did).

Q: What was it like waking up out of surgery? What was the pain like?
A: I first woke up in the middle of getting x-rays. I couldn't open my eyes because they were so swollen, but I felt myself somehow standing with my arms crossed out in front of me. But only for a second. The next thing I knew, I was lying on an x-ray table, and soon I was out again. Then I found myself in ICU with my parents. You just feel like you're waking up in the morning, with a few differences. :) They took the tube out of my nose, and at first it was hard to breathe because my whole face was swollen. My throat and lips were SO dry, but the nurses gave me chapstick and a little water. And then I was back asleep.

As for pain, I mostly felt stiff that first day. I felt like I couldn't really move, but I didn't want to, either. I was in and out of sleep all day. So my short answer is, don't even worry about that part!

Q: Did all the tubes give you any problems? Does it hurt to get them out?
A: Honestly, I didn't even think about them. And I had 7 or 8. I'm also prone to pass out over things like that, too, but I never even noticed them. I also only remember them taking out the IV's in my hand, and trust me, you won't care.

Q: What can I do at home to make the recovery easier?
A: A lot of things. Here we go:
1. Have a good, positive attitude, and set goals.
2. Always keep a lot of pillows on hand.
3. Keep walking.
4. Get one last hair cut before your surgery. (Unfortunately, I didn't, and had to deal with my long, thick hair.)
5. Faithfully take your pain meds, but get off of them as soon as you can.
6. Watch movies, listen to music, and use your laptop.

Q: What are your limitations now?
A: Bending my back. I can do everything I used to do except bend my back. But I don't really need to anyway. You can bend at the waist or squat down. I'm back to playing volleyball and sitting all hours of the day while at school and practicing instruments. Just think of it like this: you can do everything except have bad posture.

Q: Have you ever set off the alarms at the airport?
A: Never.

Q: Was it worth it?
A: Absolutely!

Wednesday, August 10, 2011

Where's Waldo?

My scoliosis advocacy on the internet has sort of become a game of "Where's Waldo?" this summer. I'm all over multiple scoliosis sites in some shape or form, but sometimes you have to look a little harder to find me. So I'm going to give you just a few of the links to other sites that I've had the opportunity to be a part of.

The first site I contributed to is YouTube. I made my video with the intention of helping others who are going to face the same surgery. And it's had more responses than I ever imagined it would have!

You can find me on another health advocate's blog, as well. She has spotlight interviews to get the word out about their conditions in a great effort to help others. 

On WEGO Health TV, you'll find me in the joint pain section. If you want my two cents on how to stay active with joint pain, you can watch these little informational video interviews.

The National Scoliosis Foundation Forum is a great site for scoliosis patients or parents of patients to join. I enjoy talking to others and sharing experiences with each other.

What is the point of all this? I'm a scoliosis advocate, of course! I know things now that I would have wanted to know while going through my scoliosis experiences. And there are TONS of parents and kids out there who could benefit from my help. I didn't go through all that for nothing! So whether I join an online health community or others add my links to their personal blogs, I've found that it's easy to spread the word. And it's not hard to find me out there.

Tuesday, August 2, 2011

A Parent's Perspective

This post has a guest writer, Brenda VanderKooi (known to me as Mom). As a parent, you experience a whole different battle. Since I've had many parents contact me about the surgery, you parents can probably benefit from reading about what it has been like for my parents throughout this whole experience.

We've had a few people ask if I have posted any comments or have a web page of my own that talks about what parents deal with when their child has scoliosis. I think it's time now to share my feelings on the subject.

I remember when we first found out Katie had scoliosis, I was worried. I had an aunt who had scoliosis as a child and had 2 surgeries to correct it. I felt sick to my stomach. The doctor said her curve wasn't bad, but keep an eye on it and have the doctors check it when she is about 11. My husband was an active duty Marine, so we moved a lot, and the girls had many different doctors, but I always made sure they kept up on the scoliosis. By the time she was 11, we were told she had 2 curves and needed bracing. I was devastated. The first day she got her brace, I cried. How could I put my child in this hard hunk of plastic? I don't think I ever imagined her having surgery.

I remember having to remind her a few times to get her brace back on and telling her if she didn't wear it her curves might get worse and she could have to have surgery. Well, she did wear it and her degrees still got worse, and she did end up having surgery. When they told us she would need surgery, I sat in the doctor's office and cried. Katie was crying too. I think it hit us pretty hard because my husband was in Iraq. He came home over Christmas break, so we made an appointment with an orthopedic specialist in Indianapolis for a second opinion... and the answer was the same. When my husband came home from Iraq, he started working in Chicago. We had some friends whose son had orthopedic surgery in Chicago at Shriners, and he went to visit them. That's how we learned about Shriners.

After our appointment at Shriners, we needed to set a date for surgery. I really struggled with this. I knew she needed it, but I kept thinking maybe it won't get any worse and she will be fine the way she is. But as the curve increased, so did her everyday pain.

I would pray every day asking the Lord to heal her-- to straighten her spine when nothing else was working and the brace had failed her. I knew He could do it, but I just couldn't understand why He wasn't doing it. I couldn't imagine my daughter being cut open and going through so much pain. She always had such a good attitude about everything, and of course she did about this too. I would lie awake at night and sometimes cry. Sometimes I would get sick to my stomach thinking about it. I talked to her one day about it and told her I didn't like this option. She said, "Mom, did you ever think that maybe God wants me to go through this?" Well, after watching her struggle daily with pain and yet keep a good attitude, I knew she needed surgery.

When they wheeled her into the OR, I thought, if she calls my name, I'm yanking her out of here and we won't go through with this. She did call my name, but only to ask if I would call the school secretary to see if she passed her trig test!

I finally had perfect peace when they came out to tell us that the doctor had begun the surgery. We were sitting in the waiting room and there was a sweet couple sitting across from us, and their infant son who has scoliosis was in surgery, as well. We began to talk and were able to share our story about Katie. It was a special time we shared sitting there in the waiting room. The Lord is so good. He does know what's best... even when it involves our children. I have often thought, I trusted Him with my soul to save me for eternity. Why am I struggling to trust Him with my child? He made her and knows every part of her and knows what will happen. He certainly can carry her through this, and He did.

I do have to say, when you first walk into the ICU and see your child laying there with the tubes and looking really swollen, it is hard to handle at first. They showed us her x-ray right after we saw her and it was so straight. We knew we did what was best for her.

I'm sharing all of this with you parents because we are human. We love our children and don't like to see them suffer. I cannot tell you how it feels to live with scoliosis or what it's like to have a spinal fusion, but I can tell you I know how it feels to watch your child go through this and to know we can't make things all better for them like we did when they were younger. I know what it's like to take care of them for a long stretch... and how good it feels when they are starting to eat again and to dress themselves. I know the nervous feelings you have sending them back to school unprotected in the halls for the first time after surgery. They do bounce back and things do get back to normal.

Advice I would have if your child is facing surgery-- Katie's blog is full of useful information that we didn't have before surgery and that I wish we would have known. This blog was written to help the patient as well as the parents. It's full of things they do not think to tell you before or what is expected of you when you get home. You will become nurse 24/7, but it is great bonding time. If you have any questions or just need to talk, please feel free to contact me. I am praying for all of you who are facing these decisions of surgery and those who already have a surgery date.