Yesterday, my husband took Henry up to Park Ridge for his tendon release and casting surgery to correct his bilateral clubbed feet. Henry is fine and recovering well (aka sleeping a ton) but the surgery did not go as we expected.
Apparently, Henry’s little bones are all jacked up, and his clubbed feet are irregular, even for a kid with spina bifida. His talus bone, I guess, is bent at a weird angle, which complicates the surgery and the casting a little bit. Here is what I understand in laymen’s terms:
Normal club foot repair surgery: Doctor goes in, releases the tendon (shudder), turns the bones, restructures the foot with a splint, and casts the foot to keep it in place.
What they did with Henry: Doctor goes in, releases the tendon, goes to turn the bone and sees that it’s weirdly shaped and turning it would make his foot even more crooked. Doc scratches his head. Doc sews up the leg, casts it, and hopes that the casts will do the work of flattening his feet and restructuring the foot on its own. If that doesn’t work, Doc will eventually have to remove the bone altogether.
What this means for Henry is that we have to cast his feet ONE AT A TIME, to see if the procedure is successful on one foot before we start the procedure in the other foot. The reason they can’t just release the tendons from both feet and cast them at the same time is that if the surgery doesn’t work and we need to remove the bone, scarring from the first surgery can complicate the second procedure. So instead of casting both his feet for a few months and being done with it, we have to go through the casting process for one foot, see if it flattens and straightens, and then go the tendon release surgery and the casting process ALL OVER AGAIN six months later.
So eventually, the clubbed foot is going to be corrected. But we’re going to have to take a much longer route to get there.
Not to be a Debbie Downer, but this … kind of sucks.
Don’t get me wrong — I am so thankful that we have the resources to fix his clubbed feet in the first place. I know that for the majority of children in the world, this surgery isn’t even an option. Some people live with clubbed feet their entire lives. I’m so glad we get to have this procedure done, even if it’s going to take us a little longer to cast his feet than we expected.
The difficult part about this, though, is that our hospital is 90 minutes away. And will have to drive up there every week for several months to re-cast his feet and legs. That’s a LOT of gas. And a LOT of time. Days that we drive up to Park Ridge I consider “survival days” — we’re just doing the minimum to survive. June watches a LOT of TV (we have a TV in our Honda Pilot; it’s pretty freaking sweet for long drives), both kids eat a lot of snacks, both kids play with the iPad for far too long to keep them occupied while I talk to the doctors. It’s not ideal, but it doesn’t happen very often. This casting process means we’re going to have many, many “survival days,” and that kind of just breaks my heart. I like spending our days quietly at home, not throwing bags of Goldfish crackers in the backseat and cranking up the volume on the television so I can concentrate on finding the right highway exit.
This is one of those days where I really hate the ‘bif. It can be such a freaking drain — on your family, on your finances, on your time, on your health. On EVERYONE. And I don’t say this because I’m complaining — I’m saying this because this is what spina bifida looks like. This is reality. It’s not doom and gloom, but it’s not always rainbows and sunshine either.
So this kinda sucks. But you know what? We’re grateful for this experience. All of it. No mom really wants to see her child suffer, but I’m hoping that Henry will struggle just enough to become a young man of character. I’m hoping that not only will he eventually have functional feet, but also that he can use this experience to encourage other people as well. What if one day some kid in his elementary school class has to have surgery for a broken leg, and he’s terrified? What if Henry can draw on this experience and help assure the kid that if he can have casts for months on end, so can anyone? And maybe he’ll give the kid a smile and a hug and a promise to draw a picture on his cast as well. Wouldn’t that just be the best?
We’re gonna use this shitty situation for the glory of God. We’re gonna turn this tragedy into a triumph — one leg at a time.