When Clubfoot Comes Back

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(continued from “The best kind of deformity”)

Three and a half years after Kyle’s clubbed feet were completely corrected, and six months after our triumphant graduation from the dreaded bar and shoes nighttime orthotic, Daddy took him in for a checkup with his Orthopedic doctor, Dr. Miracle Worker. We were expecting the usual good report, but were disappointed to hear that his right foot, which had always been tighter, was beginning to pull back inward. It caused his right ankle bone to push against the outside of his daytime Sure Steps orthotics, forming a nasty blistered callus.

The doctor mentioned that a tendon transfer surgery might be in Kyle’s future. Before we made any decisions, we decided to try physical therapy. We met with the physical therapist, learned some stretches, spent a few months attempting to do the stretches on Kyle’s squirmy feet, and met with the physical therapist again. No change.

As I mentioned in Part 1, Kyle escaped the procedure commonly done as the last step in clubfoot correction–the Achilles tendon release. It came back to haunt us, but if he had had the procedure, I don’t think it would have been enough to correct the new problems.

Around this time, my friend’s daughter was having some issues with toe walking, so she had walking casts put on her feet to correct it by lengthening the Achilles tendon. I made an appointment with Dr. Miracle Worker to see if he could do this for Kyle. Despite his mad skills in casting, as a non-surgeon he wasn’t thaumaturgical enough to change the anatomy of Kyle’s foot. So we went in to see his colleague, the orthopedic surgeon.

The surgeon said that basically he was going to need the tendon transfer surgery at some point, but there was no huge rush. He explained that he would move the tendon that was pulling Kyle’s foot inward and down, from the inside of his foot to the top of his foot. He would do the Achilles tendon release at the same time. Then Kyle would wear a non-walking cast for 6 weeks. The thoughts running through my head were that I wanted to get Kyle out of the non-walking cast before school started, and that he needed to do this surgery while he was still light enough for me to carry him around. There was a cancellation the following week, so I jumped on it.

Daddy took him in for the surgery, picked up his narcotics, and brought him home. Until the anesthesia block wore off, Kyle was in wonderful spirits and I thought all would be well. Unfortunately, the next day the pain hit him like a ton of bricks.

He spent much of the first week watching TV on my bed with his foot elevated as much as he would allow.

cast sleep
I had no idea how we would keep him busy for 6 weeks in a non-walking cast. One of Kyle’s favorite self-regulating activities is to stand in front of our rocker-recliner and rock while playing with a toy. He can do this for hours. Once he even fell asleep standing there.

But Kyle was a trooper during those six weeks. We got him a blocks table and figured out he loved to a) sit in front of it in our child-size recliner and b) bounce on the recliner while listening to “What Does the Fox Say.”

New blocks table.
Instead of standing by the big rocker, he would sit on the floor and play with his toys. When he got bored of his toys, the ipad was a good fall-back.

cast ipad
I was nervous the day the cast came off because it was a sedated procedure. I thought because the doctor needed Kyle to be perfectly still when he applied the walking cast. Once we got there, I realized for the first time the extent of Dr. Orthopedic Surgeon’s poor communication skills. He came in once Kyle had been given the relaxing medicine (but was still awake), and informed me that Kyle had a 4-inch pin in his foot that needed to be removed (that he did not tell my husband about at the surgery). In order to minimize the sedation time, and while I sat on the bed holding Kyle from behind, the doctor removed the cast with the loud saw and then removed the pin while I held a “relaxed” but struggling Kyle. And then the doctor left the room.

At this point I found out that while Kyle was sedated, the tech would be applying the walking cast. Later when I asked why he had required sedation, Dr. Orthopedic Surgeon said that “…sometimes kids have sores from the cast and they freak out when the cast is removed. It just makes it easier for me if they are sedated.” In fact, he said this to me while suggesting that we sedate Kyle when another tech needed to make a mold of Kyle’s foot for his shoe orthotics. No thanks!!

walking cast
Kyle was understandably cautious about walking on a foot he hadn’t walked on for six weeks. The next day, when he still wasn’t walking, I called the orthopedic nurse who told me that it might take a few days for the pain to subside and for him to get used to the new cast. Not so for Kyle.

School was set to start in less than a week, and I was eager for him to walk before school started. When he still wasn’t walking on the first day, I talked to his teachers about using a wagon to transport him from the bus to his classroom. When Kyle got home after his first day of four-year-old kindergarten, I looked in his communication notebook to find this note from his teacher: “Kyle took a few steps today.”

WHAT?!

When I tried insisting that he walk to the kitchen for lunch, Kyle threw himself on the ground and a major fit ensued. The kid was playing me! He was playing us all! It was a loud day with lots of screaming, but by the end of the day he realized his days of being carried around the house were over. Within a day or two he was back to walking full-time.

Four weeks in the walking cast, we were able to get it removed. The surgeon didn’t even look at Kyle’s foot after the cast came off, but the previous time he assured me that the surgery was a success and that Kyle’s foot looked beautiful. He also did not communicate to me that when the walking cast came off, an enormous metal-rimmed boot would go on until Kyle’s custom molded orthotics came in (this is when he suggested sedation).

We went in the next week, got the molding done with no complications (and no sedation!) thanks to the ipad, and waited another four weeks in the horrid boot until the orthotics came in. Kyle now wears a brace in his shoe that goes almost to his knee, and will wear this for about a year (not communicated to me in the beginning). He also wears a brace at night that includes a strap we can tighten to continue stretching Kyle’s Achilles tendon for the next year.

It was not my favorite experience, and I am looking forward to the day we can return to Dr. Miracle Worker as Kyle’s orthopedic doctor. For now we continue to see the surgeon. Assuredly, Kyle’s walking is much smoother, and I’m sure it was all worth it. The kindest part is that most likely in a few years Kyle will remember nothing of this experience.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

7 thoughts on “When Clubfoot Comes Back

  1. terrypetersen

    I can’t tell you how much your posts mean to me as the grandmother of a child with Down syndrome. Our little one faces surgery in January–certainly not her first. I feel less alone as I read your words. Thanks.

    Reply
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