Scoliosis Surgery and Recovery

I'm really behind on our Kimmie Stories. Hopefully life will return to some semblance of normal soon and I can get back to sharing Kimmie with everyone.

I thought some of you might like more information about Kimmie's scoliosis surgery and her recovery.

What they did: Two rods were placed on either side of Kimmie's spine to hold her spine straight. These rods are attached with screws or pins. These rods go down to about her waist. Many of the bones in her spine were fused to each other which involved bone graphs. A few were not fused to allow bend in critical locations.

Why the surgery was needed: Kimmie's spine had an "S" shaped curve with the worst part of the curve being at the top. Having her spine curved like this caused her some pain and discomfort. (At least we think it did. Since Kimmie can't or won't tell us, it's a guessing game on our part.) It had also caused her to have a "hump" on the left side of her back, in the area of her left shoulder blade. But, more importantly, is that the curve was getting worse and as it progressed her chest cavity was getting smaller, shorter. If we did nothing and allowed the scoliosis to progress, her lung functioning would eventually be affected, a potentially life-threatening problem.

Recovery: Her recovery from this surgery has been much slower than the other surgeries. The procedure itself did not take longer than the earlier surgery, but the nature of this was much more involved--installing foreign material into the body and messing with the bones . . .

To understand what she might be feeling and experiencing, we did an internet search and found a website that a young lady had developed telling about her experience having scoliosis surgery. (www.scoligirl.com)

The "scoligirl" website helped us understand some of the pain and discomfort that Kimberly might be feeling. Which was very helpful since she is unable to tell us what she feels. Evidentally the pain following surgery is intense. On the scoligirl website, we learned that she had some level of pain or discomfort in other areas that were effected by the movement of the spine. For instance, because of the curve, the shoulder blade had been pushed out of place. After the surgery, it was able to move back into position, but this felt uncomfortable because it hadn't been in that spot for a long time. Also, moving the spine pulled or stretched some of her muscles making them sore for a while. We found this interesting because Kimmie did point to one shoulder and upper arm and say that they hurt. The shoulder was the one that the curve pushed into.

Since Kimmie now has these rods in her back, she has to move differently and there are movements that she just cannot do any more. She has not had any physical therapy yet, but she may need some to learn how to move for specific tasks like picking something up off the floor, reaching different ways for items.

At home, Kimmie has always played sitting on the floor with all of her toys strewn around her. She especially likes to sit on the floor and play with her magnetic sticks, while rocking back and forth. Well, Kimmie has only sat on the floor once since being home from the hospital. She sat on the floor for about 10 minutes yesterday and then wanted up. Getting down onto the floor seems to be difficult and she cannot get up by herself either. We're not sure yet if she will be able to continue to sit and play on the floor, or if this is going to be a lifestyle change for her and she will need to find another way to play.

It's been about 16 days since the surgery and she still spends most of her time laying down. She does not seem to be comfortable for very long in a sitting position. This may be partly because of her physical size and the fact that furniture doesn't fit her size very well. We may have to try to find some pieces of furniture that fit her small frame better. She can go up and down stairs with assistance, but has only done one step (from our family room to our kitchen) by herself since the surgery.

The hump that was on her left side appears to be gone. I think she has gained about an inch in height, maybe a little more. She appears to sit taller and stand straighter. She does not seem to be uncomfortable in any way when she is walking around. Our one concern is that there is a section of her back where the spine protrudes and forms a ridge. We went from a hump on the left to a ridge closer to the center of her back. We talked to the doctor about this, on the phone, and he thinks she is fine. He attributed it to her having so little muscle mass and fat.

Speaking of fat. She doesn't have any. Her appetite has not returned to normal, and we continue to have difficulty getting her to eat much. We've moved to trying to feed her every couple hours. We don't know how much weight she has lost, but she's definitely thinner and more delicate looking.

Feeding her every couple hours feels like we have a newborn in the house again. Her sleep schedule is like that, too. She doesn't sleep 12-20 hours straight any more. She is staying awake most of the day, but she only sleeps at night about as long as the pain medicine lasts. She is starting to sleep a couple hours past the medicine.

I think that gives a complete picture of how Kimmie's doing.

--Mom