super hip/knee/ankle surgery

Olivia had her super hip/knee/ankle surgery in early August. Dr. Paley performed her surgery. Olivia was 26 months old at the time of surgery. She was in the operating room for about 11 hours. Since she was under anesthesia for so long, they put her in the Pediatric ICU for the first night of post surgery. Dr. Paley said that her surgery went well. He was able to do everything he needed and wanted to do in order to prepare her for lengthening.

Before surgery we were told to expect her to be in an external fixator for 6 weeks and then some type of cast for an additional 6 weeks. We were also told that there was a possibility that she would be in a spica cast after surgery instead of the fixator. So we were prepared for either option. It turned out that she was in a spica cast after surgery. (We chose a pink cast for her.) As I said, we were prepared for the cast, just not what it was going to look like. I thought it would be down her surgery leg (left leg) and around her waist. Well, it was and more. It went all the way down her left leg (only her toes exposed), around her waist, and down her right leg to above the knee. An area was cut out for diapering. I got really upset after I saw it because with this design she couldn’t crawl or sit upright.

The only big problem we had after her surgery was that Olivia got severe muscle spasms. Her right leg would spasm so hard that her whole body shook. The spasms happened so often that she couldn’t sleep. 24 hours and 3 different medications later, the doctors got the spasms under control.

Olivia’s surgery was on a Wednesday. She was discharged on the following Monday and we went back home to NJ. She wasn’t able to fit in her carseat, so we had to use a special harness in the car. It strapped her in the backseat of the car while she was lying down.

Thankfully, she was able to fit in her highchair and stroller. We just had to recline both some so she wouldn’t slide out. I couldn’t find a beanbag for her to sit in. Instead, I went to Toys R Us and bought her a little foam chair. (Hers has Elmo on it.) Since it’s foam, it was able to recline enough for her and the arms were able to adjust for the width of her cast. I tried to get her a walker, like you’d get for an infant just learning to walk, but the width of her cast was too big to fit in any I could find. And the ride-on toys wouldn’t fit her either. So she’d have to wait to move around on her own.

Olivia had to wear her cast for 6 weeks. It was really hard on all of us. Olivia was only in pain for about a week or 2 after surgery. But before surgery she was an active 2 year old, used to walking around on her own. Her cast didn’t allow her to move much at all. At the beginning, she could roll over if she wanted, but mostly she just lay on the couch and demanded attention. She (and I) cried A LOT. I had to take it minute by minute. Moods would change that fast. My family tried to visit us about twice a week, which helped a lot. We had to constantly keep her distracted with new things. I tried to give her something new each day to play with. Nothing big. Stuff like playdough, a new stuffed animal, or a small toy. About 4 weeks after surgery, Olivia started to accept her situation. She started to crawl around the floor using only her arms. She started to pull herself up to standing. And she even started to walk behind a push toy or by holding on to our hands. She started acting like herself again by laughing and being silly.

A word on diapering. Olivia’s spica cast allowed only limited access to the diapering area. The hospital suggested the following: place a Newborn/Size 1 diaper over the diaper area, line that diaper and the diaper opening of the cast with adult incontinence pads (Poise pads), and then put a Size 5 diaper on the outside of the cast to hold everything in. For us, this failed horribly. At least once a day, she would have a major leak that would saturate the lining of the cast. You have to keep the cast dry. (I think to prevent rash or infection.) So every time it got wet, I had to use a hair dryer (COOL setting!!) to dry it. This often took over an hour. (She cried. I cried.) Size 1 diapers are just not designed to hold the amount of urine that a 2-year-old expels. So after several weeks of this method, I decided to try something else. I found that I could tuck a Size 4 diaper (what she wore before surgery) up under her cast (front and back). I was extremely careful not to irritate any surgery area. Then I put a Size 5 diaper on top like before. This method wasn’t perfect, but it greatly cut down on the number of leaks. In the beginning, I thought BM diapers were going to be the biggest problem. They weren’t a problem for us at all.

Since Olivia wasn’t really moving around a lot with her cast on her, she ate less. And since the only way to move around was to pull herself on the floor with her arms, her arms and belly became really toned. So after she had her cast removed, she dropped from a Size 4 diaper before surgery, to a Size 3 diaper after cast removal.

6 weeks after surgery we went back to Baltimore to have her cast removed. During her initial surgery, Dr. Paley put 2 pins in her knee and 1 pin in her ankle to keep them from moving while she was in her cast. So she needed to go back under general anesthesia to get the pins removed and cast off. Later that same day we went home. We were hoping never to see her cast again, but she need to wear it while she slept at night for 2 more weeks. Dr. Paley said this was because she wasn’t used to not wearing yet. It only took Olivia a couple of days to recover from the anesthesia. Her leg was really sore and swollen from surgery. It took over a week for the swelling to go down.

A week after cast removal, she started physical therapy at Shriner’s in Philadelphia. She still goes twice a week. On her first day of therapy, Meredith (therapist) gave her a walker. Within in 5 minutes, she was hopping around the room. She had developed such strong arm muscles from pulling herself around the floor that using the walker was easy for her. (Children are truly amazing!)

On Oct. 31st (6 weeks after cast removal), Olivia got her new prosthesis. She couldn’t wear her old prosthesis because the surgery had changed the shape of her leg too much. Her new one has a prosthetic foot with a “pole” up to a plastic “boot” which supports her natural foot. It only goes up to below her knee. She’s had it for about 2 weeks now and she’s doing great.

We saw Dr. Paley last week for a follow-up appointment. He said everything looks good. We just need to continue physical therapy to work on her range of motion mostly with straightening her knee and flexing her ankle. We go back in 3 months for another follow-up. She will have her first lengthening around 3½ to 4 years of age.

It was a really tough road for us, but we made it through with the support and prayers of family and friends.

Beth
bethreinert@yahoo.com