Facing Surgery: The Concerns That Fill the Quiet Moments

Helena is finished with school for November and facing a big event this week. She will be having surgery done on one or both of her knees.

We have known for a long time that this surgery would eventually happen, but not when or how exactly. We are now running out of time and options and it is time to act.

A lot is going through our heads right now. We are hopeful that the surgery will improve her gait and help her continue to walk as she grows. We know that she has the best doctors available. But we are also concerned, too.

Numerous Concerns – Big and Small

We have worries that range from silly to quite serious. We know she will be in a wheelchair for a few weeks. We don’t really know how to dress her during that time. She has been averse to dresses lately- but now we will likely be wearing them more.

We don’t know how mobile within the chair she will be. Will she have to have a lot of help with transfers to the restroom, bath, car. We don’t know what type of bracing she will have and if she will be able to move around easily.

We don’t know how long she will be in surgery and fear that we underestimate what is going on. What if they get in there and discover something about her condition that is bad news?

We don’t know how much pain she will have, and how she will handle it when she wakes up. (She is worried about the IV. We just had a short conversation about soreness at breakfast this morning. I’ve had knee surgery and hers is going to be more invasive. Pain will be a factor, but she doesn’t realize it yet.)

We are concerned about her missing school and how that will impact her academically, as well as emotionally.

Helena’s Concerns

Helena has been voicing her own concerns. I always reassure her, but it is worrisome to hear what she is voicing:

I don’t want them to put the “straw” in my arm. (The IV)

What if the doctors make a mistake and hurt me?

Will I have to have help going to the bathroom at school?

What if I die?

If it’s not going to “work,” then why don’t we just get me an electric chair? Then I don’t have to have surgery.

The work “work” in this case has a different meaning. We know that Helena will still require bracing to walk. Her body needs some adjustment as she grows to continue walking. “Work” in this case means that she is still able to do the things she is currently able to do. Still, it is hard for a kid (and most people, really) to understand.

Expecting the Unexpected

Because we have been talking about this surgery for 7 years, we have met with the doctor with many questions. Even now, we question whether we are making the right choice. We know that even now, we don’t know everything we would like to know. Surprises still come up in the process.

Last week, I was in a meeting at work and got a phone call from her surgeon’s nurse. Two or three calls in short order, to be precise. I continued working with my cohort, knowing I was about to go meet a hurdle head on.

As I left the meeting, my husband called. They needed a surgical clearance at the last minute from another specialist. I had to call to get them to clear her or get another appointment between then and the surgery. Basically- that was 7 working days from the day of surgery. How in the world am I going to get an appointment that fast? It’s a specialist- and I can’t even get into my primary care doctor that fast.

I called the doctor’s office. After some finagling and (ahem) maternal persistence, I managed to get an appointment with him. The appointment was at a clinic farther away than the one we normally go to. We both had to take off another day of work- this was totally unexpected and last minute.

That is how these things often work for people who have kids with special medical needs. Things are never simple- there is always a battle to fight or something else going on. Things don’t ever run smoothly, so you always feel behind or like you fall short. This is something to know about when you notice a special needs parent who seems “distant” or frazzled.

Fortunately, scheduling worked in our favor this time. Three different teams of doctors are working on this surgery. It was hard for them to agree on a date. Who knows what have happened if they hadn’t?

As Helena has grown, the surgery originally discussed seven years ago has become more invasive. We know that a whole committee of doctors has met, discussed, and planned what will be happening. She could not be in better hands than this the team of doctors. We know this and are grateful, and yet we also still have concerns.

A few days ago, I took pictures of Helena’s legs. I don’t know why it seems so significant to me, but I know they will never look the same. They will have new scars. They may not work in the same way when she is not wearing her braces. In my mind, I know that how they are now will be forgotten as they are unless I document them. I want to remember every stage.

We also know we are moving ahead, and this is a positive.

We are soaking in family time, building up each other, and prioritizing family moments this weekend. We are concerned, but we are going to be okay. We are facing this together. Please pray for Helena this week. 🙂