For those of you who don’t know, as I didn’t blog about this much before, Jacob decided to have surgery on his legs this year, which he did at the end of February. I’ve held off posting anything as I didn’t want to ask Jacob what he was comfortable with me sharing, but today was a big day, and he was feeling magnanimous, perhaps, but he said I could blog away; he didn’t care. So, here I am.
For simple context, Jacob both has and doesn’t have cerebral palsy. Officially, he doesn’t have CP…he has “spastic diplegia of unknown origin that presents as CP”. If we’re talking to medical people, that’s the diagnosis; if we’re talking with laypeople, he has CP. In reality, what he has are really tight hamstrings, heel cords, and various other leg muscles. CP generally is caused by a break in some circuitry connections in the brain. It often occurs in utero; it could be a virus, or a hundred other things. Often no outward signs, but the connection is “broken”. Two wires are not connected, and so his body tells his legs to tighten. And that signal never stops. It is ALWAYS on. When he was a kid, he had ankle-foot orthotics, did serial casting, lots of physio, all designed to help him relax the tone in his legs. But it isn’t something you can “fix”, just something you can treat. If you do an MRI on the heads of CP kids, they can find the break. Except Jacob’s MRI is unremarkable. Which isn’t an insult; it just means they can’t see a break. Hence, they call it spastic diplegia rather than CP, since they can’t find a break.
In recent years, it has meant that his left foot sits flat when he stands or walks, maybe slightly turned in, and his right foot pronates strongly, so he mostly walks on his toes on that foot. Not the most stable or efficient of gaits, and so his body fights against itself when he’s walking, tiring him out faster than average and reducing his endurance. We also suspect that it contributes to his chronic pains and dizziness, but only time will tell.
We have talked about potential surgery for Jacob since he was about 5 or 6. For serious CP, it may not make much difference for some. For others, it can make a huge difference. For mild CP, the same. Every patient’s prognosis is different. In Jacob’s case, they considered five things.
The biggest surgery is called Selective Dorsal Rhizotomy (SDR). Since his brain is telling his legs to tighten, the SDR surgery interrupts the signal by kind of burning out the connections in his back, so his brain can’t tell his legs to tighten in the same way. You break the circuit. But it’s a pretty big surgery, and if it goes wrong, he’s instantly paralyzed, likely for life. Scary AF. But it is routinely done in the U.S., with significant benefits for patients. Of course, it takes almost a year to regain the mobility you had before, as you have to learn to walk again. In Ontario, the rehab is only offered in Toronto as inpatient care for three months. A pretty big commitment. If it had been offered in Ottawa, Jacob likely would have gone for it. I’m almost glad it isn’t easily available in Ottawa; I would have had way more stress as it approached.
The next biggest surgery is femoral derotation. Basically, turning your hips back to square. CP kids frequently end up with their hips out of the socket joint or not sitting right, at least, in the socket, because they have to constantly adjust their bodies to adapt to the “always on” tone. Jacob felt this was “too much”, and the surgeons weren’t convinced it would make a significant difference for him anyway. He decided no.
The next two go hand-in-hand. They use surgical techniques to lengthen the hamstrings and the heel cords. If you think of it simply, if you put a short rubber band between a post and a peg, and it stretches really tightly, that would be Jacob’s muscles. If you increase the length of the band somehow, it isn’t stretched as tightly. So even if the brain says “tighten”, it isn’t massively tightening a short band, it’s moderately tightening a longer band.
If you’re squeamish, you might want to skip this paragraph (and the next one). The surgeon explained it as being a bit like a sausage. If you grab a sausage in its case and try to stretch it, it won’t do anything. The case protects the overall length and gives it structure. On the other hand, if you slice into the sausage and then try to stretch it, it WILL stretch. Jacob’s hamstrings and heel cords were the sausage in this metaphor. Two large incisions and slicing, and instant longer hamstrings. Well, maybe not INSTANT, since the surgery took five hours, but I digress.
Lastly, they made two incisions in his left foot to reduce his foot’s tendency to rotate inward, with one on the side and one underneath.
Making the decision
As I said, Jacob decided. He has been on-board with doing “something” since he was about 10 or 11, and he is about to turn 17. He was about 12 or 13 when we went in for a bigger “planning” exam, where we heard a bit more about rehab. I was asking about the recovery period, as I knew he would have walking casts. I asked, “So, like how much help will he need?” Mostly, I wanted to know whether he would need help going to the bathroom. The surgeon blithely said, “Oh no, he won’t need much help, most just swing over from the wheelchair easy enough.” Jacob’s head snapped around and glared at me. It was the first time anyone had mentioned he would use a wheelchair for ANY of the recovery period. I thought that would kill things right there as Jacob’s quite proud of never needing assistance to walk.
He was actually added to the surgical planning schedule back in 2019 to do both his hips and legs in 2020. And then that pesky little global pandemic borked EVERY surgical waiting list. Every year, it was extended. And then he was finally going to do it about 2024, after five years of waiting, and his chronic pain stuff was flaring up. Not the best environment for adding to your health concerns.
And then last year, he met with the primary surgeon who has been ready to do this since Jacob was 6, every year saying “sometime, when he’s ready, and it’s appropriate”, and the surgeon was like, “Meh, I don’t know if it’s worth it.” WTF? We got a second opinion from another surgeon in the hospital, and he was more optimistic. No guarantees, and Jacob decided only to do the hamstrings and heel cords.
We have been trying for the last five years to do this at a time of year when it would limit the impact on Jacob’s schooling. They were GOING to do it last year, but we wanted to push it to the summer, and then other factors intervened. This year? We really wanted summer again. Nope, the open window was in late February. Frak. Jacob already misses enough school, but he is also about to age out of CHEO. This was the time to do it.
A hard decision, no doubt. Lots of potential risk, plus the work for rehab, and the potential pain and hassle of surgery at all. Jacob faced it squarely and made the call. It was a go for February.
Andrea and I are not in hospital mode anymore
I remember back in the day when Jacob was small and a frequent flyer at CHEO. We had a routine where Andrea would take a change of clothes, plus clothes for Jacob, full snacks, toys, chargers, etc. We were ORGANIZED. For the day of his surgery, done as out-patient, it was like we had never done this before. We felt like we were wandering around the house, going “Chargers? Snacks? What?” Plus, you know, you have to be early.
We had to be there at 7:00 a.m., which doesn’t sound bad, but Jacob hasn’t gotten up easily before 10:00 in many months. I had already picked up a wheelchair the day before, so we would have a wheelchair when we got home. They gave Jacob some early meds around 8:00, and his whole team showed up at 9:00 for the surgery to start. It was supposed to be just over 3 hours or so. Andrea went in with him to the room, they started asking him questions, gave him the anesthesia mask, and that was it. Andrea didn’t even get to kiss him good luck! But there were lots of people there — three in the surgical team, three in the anesthetic team, and three nurses, plus some others wandering around unidentified. For five hours. Can you imagine the bill if we were paying direct instead of through OHIP?
Andrea and I went to breakfast in the cafeteria, then back to the waiting room. There’s a sign in the room, that many people do not read, that says, “If the phone rings, answer it.” Seems odd, but it’s the way they notify parents their kids are done and awake. Seems odd to answer and say, “Hello? Just a second!” and then ask, “Parents of Danica?” while looking around at other parents before handing it off to whichever parent is there.
We waited. And waited. Saw some other medical people who have treated Jacob, but not that day. Waited some more. Finally, as we got closer to the five-hour mark, the surgeon showed up and told us everything had gone well. The surgery took so long as it was more technically challenging. The incisions are done to the hamstrings while Jacob is lying on his back, and they go in through the adductor area (inner thighs), so hard to get to and Jacob’s legs are really tight. They did the hamstrings and the heel cords. Which we knew about. But he also did the feet, which I didn’t even know had been an option. Anyway, all good.
Seeing Jacob in the recovery room was odd. First and foremost, he had his glasses off and wasn’t wearing his contacts. So he looked different than usual anyway. But he also just seemed older. His voice was a bit deeper, he wasn’t as playful as he is usually. He was in super serious mode. And not cuz he was in any pain, cuz he wasn’t.
Mom joined us, we helped him sort of get ready to leave, and then the fun began. With the surgery, Jacob had two casts on his feet from the toes up to just below the knee. But the legs also have to stay relatively straight almost 24/7 for several weeks to aid in the healing so they gave him these leg casts / braces that go under the backs of his legs and do up in front, going from ankle to groin on each leg, and done up tight with velcro. They prevent the knee from bending at all. No problem, we knew this was happening.
When we had talked to the surgeon, he had told us that we should have them on all the time, but of course, we had to drive home, and he had to use the washroom, etc., etc., etc. So we could remove them. But when we went to plan our trip home, the nurse said, “Oh, no, you can’t take the braces off, they have to stay on, surgeon’s orders.” We were semi-sure that was not the right interpretation, but we weren’t sure; we could have misheard. So we left them on. And then had to get surgical scrub pants from the hospital to go OVER the braces as there was no way Jacob’s pants would fit and he was kind of flapping in the wind.
We got him off the bed, standing, and into a wheelchair with his legs supported and very reclined. All the way to the front door of the hospital, but then we had to get him into the car. I’m sure CHEO could sell that footage as it likely looked like a gong show, but it was incredibly stressful. It is near impossible to put someone in leg casts into a car when he’s 17 and mostly deadweight. It took almost 20 minutes.
When we finally got home, and in the garage, we took the pants off and the braces (called Zimmers by the way), and got him into the house and into the wheelchair in about 5 minutes with no gong show antics. We should have absolutely trusted our original instructions.
The biggest thing after that was the first two days for pain management, although it was both simple and complicated at the same time, and highly efficient. I was expecting him to have a lot of pain and soreness. Instead, he had almost none. They gave him what they call a nerve block for each leg. In effect, there was a catheter running from the nerves that control the pain in the area, out the side of his legs into a bag, and the bag had a numbing agent in it. The bag sat in the equivalent of a fanny pack that could go around your waist or more easily, just over your neck, and sits there for two days, blocking all nerve pain from reaching your brain. At the end of two days, you watch a little video, and then you pull it out yourself. Or, in our case, Andrea did it. Jacob said it felt weird having this thing moving inside his body to come out, but no pain. He took Tylenol and Advil as preventative and treatment, but never needed his “stronger” pain meds. He took one, I think, on two different nights when he had spasms earlier, but mostly he survived VERY well on his own.
We put two chairs in a downstairs and upstairs bathroom so he could transition from the wheelchair (which doesn’t fit in bathroom doors) to the chair, then close the door, before transitioning himself to the toilet. Most of the time, the only real help he needed was for food in the kitchen to access the fridge and cupboards; carry his wheelchair up and down the stairs once per day; and help doing up the straps on his Zimmers. When he started walking, we gave him support a few times, but most of the time, he did it himself.
For about a week after the surgery, Jacob had been going up and down the stairs mostly on his butt. Then, one night, I was carrying the wheelchair up the stairs ahead of him, I got to the top to put it down and set the brake, etc., and I realized he was already at the top and I was in the way. And then I realized the reason I was in the way was that he had walked ALL THE WAY UP on his own two feet, not climbing backwards on his butt. Amazing.
I confess with his earlier aversion to the wheelchair, I thought he would fight it. But he didn’t. On the other hand, nobody ever saw him it outside of people at CHEO (using one of theirs) or Andrea and I at home. He didn’t even tell his friends he was having the surgery until afterwards, and he has avoided inviting them over until he feels more stable walking. Maybe now that the casts are gone, he might feel better.
Oh, and he has needed help with bathing, in a way. Not help with the bathing part, more getting INTO the bathing setup. CHEO and others basically said, “Okay, don’t get the casts wet.” Which means they advise you to shower with garbage bags over your casts and taped so no water gets in. In case water DOES get in, they advise you to first wrap the casts in a towel. The other alternative is you can buy these plastic leg bags that have a tight seal at the top. You put them on like a giant sock of sorts but they have a tight opening that seals around your leg. I had one when I was in wound care for my leg; we still had an extra one for Jacob to use along with a garbage bag on the other one. But he liked the commercial one better, so we got him a second one of those. I helped him get towels around his casts and the plastic socks over his casts and on to his legs, and then he looked after getting into the tub and showering. I helped once to get them off as did Andrea, otherwise he did almost everything himself. He wouldn’t even have needed my help much the first time except the duct tape twisted and wouldn’t break for him.
Four weeks later
He wore his first casts for two weeks and then we went to CHEO (no BRACES IN THE CAR this time) to have them removed. Or more accurately, changed. They checked his legs, the incisions, and then our orthotics specialist measured him to get new ankle-foot orthotics (AFOs). Now that his right foot will sit straight, he can wear AFOs again without any posting, so we needed to order new ones. Today, for the end of week 4, we went back to CHEO to remove the last cast, have the surgeon check things (he figures he got a 30% improvement in his right ankle and foot!), and to get the new AFOs.
Going forward, it means that Jacob will wear AFOs again pretty much all the time, and in particular, in the coming weeks as he basically learns to walk again. As the surgeon put it, he’s walked for 17 years one way, and now his left foot is straighter and his right foot goes flat. It felt weird to Jacob to stand on it, but that was more about the change from the casts than the change from before.
The big ticket item is physio. He has to go twice a week for quite some time. At least we know the physio though: she’s the same person who has done his serial casts twice previously! And was involved with his original therapy for occupational therapy for writing and speech. She’s known him since he was about 4, I think. We love her.
Interestingly, the AFOs would normally send us to a special Kiddie Kobbler in town with Rob the Shoeman as the owner. He was a foot specialist before selling shoes, but he’s closing the store, and this weekend is his last. Very sad. We have a lot of fond memories going there to get Jacob shoes in a world where such an outing for large oversized shoes to fit AFOs could be a nightmare instead. It was great for us. I’m hoping to stop in this weekend just to say so long and thanks for the fish. We have good options still, now that Jacob is older, but Rob was a lifesaver for us.
The big question mark, though, is when Jacob will be strong enough to walk consistently for any distance and go back to school. He has zero interest in using a wheelchair at school. It is far too polarizing for him. But his physical recovery over the last four weeks was more challenging than we hoped and expected, and he hasn’t been able to do much schoolwork. He’s behind in everything. He wants to believe he can still finish everything, but at the risk of low marks, and now that he’s in Grade 11, those marks will go on his university application.
Yet there have been some other bright spots. Little moments here and there, for instance.
Seeing him in recovery, and him seeming older and more mature suddenly.
A few days after surgery, he slept an insane number of hours in one day, like 11:00 until almost 11:00 at night, and then back to bed around 12:30 until the morning. It was almost 18h in a 24h period. But while he was awake, he was SUPER HYPER. And gregarious. He wanted to tell me everything that was in his head. And I was so sad cuz I was dead on my feet and I had to put him to bed. I would have loved to stay up longer and just listen to him for hours.
Another moment that has happened a few times is that, as he’s sitting on the couch in his braces with his legs up, I’ve lain down beside him with my head on his leg for a simple cuddle. We’ve sat there a few times just hanging out, with him playing with my hair or massaging my head. It is so peaceful and relaxing.
Heck, I’ve even enjoyed the bedtime routine of lugging everything upstairs, as it has felt like he’s a kid again and we’re putting him to bed.
Lighter moments where we can find them.
But there is a phrase that keeps running through my head, in my pride of the decision he made on his own, albeit with our support, and all that the decision has entailed.
Bold decisions, extraordinary results.
And today? I saw him with his feet sitting completely flat with no effort, no help from an AFO, no brace, nada. Just his two feet flat on the floor, straight out from his body. Extraordinary. Beautiful.
The rehab will be hard. School will be what it is and what he can do.
But that “flat feet” posture alone is all the result we could have hoped for and more. I’m so proud of him.
Let the next phase begin; he’s ready.
