In hindsight, it may not have been the wisest decision to schedule Cade’s immunizations the day before his follow-up appointment with the pediatric plastic surgeon. Getting out the door for a morning appointment is hard enough on a normal day. Getting out the door with a crabby two-month old with a slight fever who is seemingly stuck in a sleep–wake up angry–sleep–wake up angry cycle, is even more fun. In addition, at his check-up, we were told to increase Cade’s milk intake as he dropped a few percentiles on his weight gain curve, so we had made it our mission to ensure that our little dude was always full! It was likely a combination of these factors that led to the projectile vomit of milk incident that occurred a few minutes before it was time to walk out the door.
On the way to the hospital, Lyndon and I discussed how our usually even-tempered boy had become quite crabby since he got his shots. “His cries have reached new decibels!” I remarked. Lyndon paused. “I wouldn’t use the term decibels,” he told me. “Why not?” I asked him. “He is crying louder than usual… he is increasing in decibels,” I explained stubbornly, annoyed that he was questioning my word choice. Lyndon: “I think a better way to put it would be that he is increasing in ticked-offtaves”.
I looked at him.
He (unnecessarily) further explained, “Like, ticked-off-octaves…ticked-offtaves! Get it?!”
I got it. I just hadn’t had my morning coffee yet.
It turns out, a bad but light-hearted dad-joke wasn’t a terrible way to start the day, because things were about to get heavier. If I’m honest, this appointment turned out to be one of the toughest so far. In reality, Cade’s differences affect him zero right now. He’s just discovering that he has hands (and that he can suck on them!). This appointment forced me to look into his future and think about what’s to come in the next year or so.
There was no wait this time around and we were quickly sent to an examining room with adorable woodland animals on the wall and a teeny tiny check-up bed. The opening of the children’s hospital in our city could not have been better timed! Our plastic surgeon came in and looked at Cade napping away in his car seat. “He’s cute,” he told us. We agreed. He proceeded to wake up Cade and simply watch his movements. “Sometimes the easiest way is just to watch!” he told us. We all stared at Cade as he moved his typical arm about and left his lucky fin stationary (which was just a coincidence – he definitely moves both arms!). We pulled him out of his car seat and he sleepily awoke. Lucky for us, he hung out on the tiny bed very agreeably for the remainder of the appointment while Dr. Plastic Surgeon examined his little hand and foot and showed us pictures of Cade’s x-rays that were taken when he was 13 days old. I was not in love with what he had to say…
“Cade has four bones in his hand,” he began, showing us a picture of Cade’s x-ray on his cell phone. “The x-ray shows us that this is not so much a case of missing fingers but rather, Cade’s entire hand is made up of four finger bones. He has no hand bones, no wrist bones, and two finger bones in each digit.” Well that certainly doesn’t sound optimal. He went on to tell us that Cade has some articulation in his wrist (translation: he can move it about 90 degrees) and a small amount of articulation in the top knuckle on each finger. “I see children born with missing or extra digits more often than you’d think, but this is the kind of case you only come across once every few years,” he told us. As such, he would like to refer us to an even more specialized specialist in Edmonton. If that specialist feels that Cade’s case is out of his realm, we will be sent to someone else in Toronto. “I don’t want Cade to be my first!” our young doctor remarked when we must have looked a little bit shocked that we could be sent all over Canada.
So what does this all mean? Google later told me that the typical human hand/wrist consists of 27 bones. There is a significant difference between 27 and 4. This is obviously not ideal in regards to future function. “Your options vary greatly,” our doctor told us. “You could do nothing and he use what he has as a helper hand.” Fair, people definitely do more with less. “Depending on the function, surgery to separate the digits further could be considered to enhance his range of motion (i.e. attaining the type of motion you’d make if you were pretending your fingers were scissors). “Or,” he continued, “You could consider getting him fitted for a prosthetic. Now this suggestion may seem benign and in fact, expected, given our situation, but through this very blog, I’ve had the privilege of hearing many people’s stories… I knew the question that had to be asked. “Could a prosthetic fit over his current hand or would that likely mean amputating what he has?” I asked. “Yes, it would likely mean amputation,” the doctor answered. I felt heavier.
I would love to say that this was the height of the conversation, but we had not yet discussed Cade’s right foot. Again, the doctor started by showing us a snap of the x-ray on his phone. “Starting at each toe, there is a chain of three bones that end at the ankle,” he explained. “Cade has four toes, three little ones and a big one, all of which are webbed together at the skin level. Two of his toes have all of the bones. One toe is missing half of the long bone. And all three bones starting in the big toe are fused to all three bones in the theoretical second toe forming one extra big toe” (this explains the total of four rather than five). Oh dear. “So what does this mean?” we asked again. “Between nine and twelve months I will need to separate his big toe from the other three toes,” he told us definitively. “If it is not separated, the big toe will start curving downward as it grows bigger than the rest.” Makes sense. He went on to explain that skin would be taken from the fold of the groin to make up the skin in between Cade’s toes. He told us that it is a procedure that he is very comfortable completing and can be either a day surgery or a single night hospital stay. The kicker: Cade will need to be in a complete leg cast held at a 90-degree angle for a minimum of two-weeks following the surgery. “You’d be shocked what kids can wiggle their way out of!” the doctor explained. I pictured my one-year-old niece who just recently learned to walk. She runs around the house constantly delighted by her newfound ability to move. Our babe is going to be stuck stationary while all his baby friends are moving about. I felt even heavier. “What’s he going to wear?!” I joked trying to lighten my own mood. The thought of Cade in a cast wasn’t new to me… casts will also be involved in his treatment for the vertical talis situation. But we learned that this surgery and recovery is completely separate from his diagnosis of congenital vertical talis. So we went from one procedure with casting to two procedures with casting in this appointment, all of which need to be completed around the same time line.
I can honestly say that I know Cade will be just fine. He is going to be a strong, resilient, little guy… kids of all ages get through stuff like this all the time. But I would be lying if I said I didn’t feel a range of less positive emotions. I feel sad that my baby has to go through surgeries and wear restrictive casts when he should be learning to walk. I feel worried that he will experience pain. Selfishly, I wonder how these procedures will affect Lyndon and I… I always thought that as the months go by, things would get easier in terms of sleeping, routine, etc. I can’t imagine that will be the case while navigating Cade’s medical needs.
This Friday, we head back to the hospital to see our orthopedic surgeon again. I look forward to more answers and getting a better idea of how each of Cade’s competing needs will be addressed and coordinated by the different health professionals involved.
In the meantime, I will be sipping on coffee and Bailey’s (totally socially acceptable around the holidays, am I right?! 😉 and will be celebrating the fact that Cade has now slept through the night three nights in a row! 😀