It was late March of this year when we decided to schedule Nora’s big surgery. We knew she would be big enough and in the preferred age range for the surgery, which is about 3-5 years old. I know what you’re thinking. You’re thinking that’s still a big time frame, why not prolong it and wait till she’s closer to 5 years old? I struggle with this one too and go back and forth in my mind…should we just wait a little longer? By nature, I’m a great procrastinator but I’m also a bit of a perfectionist; a heck of a combo that always keeps my life entertaining and has made this journey interesting to say the least. But here’s how we came to this decision: I asked our surgeon if there was any benefit to waiting till she’s closer to five years old rather than doing it at three years old. He said no, she’s big enough and that doing it at three does not have any disadvantages over waiting till she is closer to five. He added, there’s no easy answer. If we weren’t ready we could wait. However, we would need to keep casting her till we were ready. It was those two factors that really made the choice seem a little easier.
The fact is Nora has already been under anesthesia ten times. All before the age of three. There are studies starting to come out questioning the long term effects of anesthesia on young children. Of course nothing in these studies is concrete; they more or less say ‘we need to study this further’, but they are beginning to point to possible cognitive and behavior issues down the road. Plus there are always risks with anesthesia in general. And on top of that Nora has a horrendous time coming out of anesthesia. Lastly, cast life isn’t always easy, for us it has gotten harder as she got older. I truly admire the parents of kids who are really in it for a long haul and have years of casting ahead of them with no promises and still a strong likelihood of surgery down the road. That’s a tough tough road.
So Matt and I talked about it for maybe 10 minutes and decided yes, let’s schedule it for five months from now. Five months was a long ways off. And at this point I had taught myself to only think in the present, what’s right in from of me. We lived cast-to-cast, day-to-day. But NOW, five months is suddenly right in front of me.
The thought process I had going into picking a date for her surgery is probably a little crazy and neurotic. I knew I wanted the summer to be cast free and full of fun and freedom, which our surgeon was on board with as well. I also knew early summer was a very busy time for our surgeon because so many school aged kids who need surgery would be having them then so they wouldn’t miss school or very much school. So I didn’t want to schedule it in June or July when, in my mind, he’s doing back-to-back surgeries all day long, day after day and he’s probably pretty tired. This isn’t a quick two-three hour surgery, his assistant told me it will be 7-8 hours. I want to make sure he’s well rested and fresh and energized. Crazy thinking I know, this is his job and he’s not going to schedule a surgery when he’s not able to perform it at his best. But still. So when his medical assistant told me he was going to be vacation for a week in mid-August, I jumped on the August 25th date. It would be his second day back from vacation. I thought, this was perfect, he’ll be well rested and relaxed after spending quality time with his family.
But then even more crazy set in…and I started thinking, what kind of vacation is he going on? What if it’s an adventurist vacation of rock climbing and hiking 14ers and he actually comes back from his vacation tired and sore from doing things he isn’t used to doing. Or what if it’s out of the country somewhere and he drinks the local water and gets a delayed illness and it hits him half way through the surgery. Then I started thinking this is a bad idea…I need to reschedule. Really just procrastinating.
I shared this irrational and wacky thinking with just two people, my congenital scoliosis mom friend who’s daughter is close to Nora’s age and had her surgery already, and my husband, Matt. My mom-friend was reassuring that I wasn’t, in fact, crazy. She told me she had many “what-if’s” too before her daughter’s surgery. She worried about her surgeon getting in a fight with his wife the night before or not getting a good night’s sleep and being off his game the next day, or what if his kids were sick and he was up all night with them and suddenly comes down with an illness as well. Now when I told Matt what I was thinking, he stopped and said, “oh my gosh that’s what really goes on in your head?” he laughed and shook his head and said, “How do you even come up with this stuff?” I laughed too, I know I’m nutty.
Recently, our surgeon told me he reads my blog occasionally. I’m sure he’s just going to love this post. It could very well change his opinion of me. Or maybe I’ll be lucky and it will make him think twice about bungee jumping on his vacation.
So now we are only two months away from her surgery and we don’t even know yet exactly what the surgery will be or what it will look like. We have ideas but we haven’t had the big sit down yet with the surgeon to figure this out. I’m starting to get antsy and worried again. There’s so much going on in our lives right now that has me dealing with more stress than I’m used to and adding the surgery concerns makes everything a little intense to say the least. I started reading published studies and papers again on surgical options, and the risks and complications are weighing heavy on my mind. I know I should just stop but I can’t.
So once again I want to push this back too and not deal with having to make another decision. Yet every time I touch my daughter’s back I’m reminded how we can’t turn away or push this off. A wise woman in one of my support groups said, “the decision is harder than the incision.” Considering how hard these decisions have been and all the second guessing that comes with it, I sure hope she’s right.