Much has happened since I last posted. Last night, I would have said the most important things to talk about is Namine having a good time trick or treating at the zoo and around the neighborhood. Since I was feeling a bit under the weather, last night, I thought I’d put off posting to today. Now, though, the most important thing to talk about is orthopedics and their general assholery.

Before you tell me how I’m overreacting, let me give you a little background. When Namine was a little itty bitty thing, ortho said that while they wanted to fix her feet, they wanted to wait because she had heart and airway issues, and those were more important; those were life-threatening issues, while club feet are definitely not fatal. That’s fine, we said, thinking that as soon as she was stable, ortho would preform the surgery. It was important, they had said, to do the surgery as young as possible, so that her feet would not harden too much into their position. Wait too long, and they’d have to end up basically breaking her feet in order to reposition them.

Well, Namine had both heart surgeries, and everything there went according to plan. But ortho did not follow Namine as ENT, pulmonary, and cardiology followed her. Attempts to contact ortho were met with frustration; finally, we did meet with the orthopedic doctor who would perform Namine’s foot repair, about a year after she should have gotten the surgery. As a direct result, Namine would need her feet broken, a bone removed from the top of her feet, and a tendon behind severed. Fine, we said. We were willing to put Namine through the pain, in order to gain something she would otherwise never have: the chance to walk.

Do not misunderstand me. It is not a sure thing that Namine will walk. We will not know if her legs can even bear her weight, not until the surgery and healing are done, the casts are off, the leg braces are on, and she undergoes therapy. We are trading a certainty for an uncertainty. But the uncertainty, we believe, is worth the risk. I know there are those who disagree with me. Why put her through the pain, when her legs might not be strong enough? when her feet might regress back to their old shape?

Because for one, she’s two. She most likely will not remember the pain. (I will, of course, but I already have plenty of reasons to hate myself. One more reason will not matter.) Two, the human body has a way of forgetting pain. I myself remember almost nothing of the pain and discomfort from my hernia, or its subsequent surgery and recovery. Three, and I believe this is the most important reason, without taking a chance, you will never know what you can gain. Namine’s decannulation is proof enough of that, I think. Each step of the way was a risk: from her jaw distraction, cleft palate repair, and even the capped sleep study, there were risks the entire way. But Namine persevered, and ultimately triumphed. She is now trachless, with only a healing scar on her neck to show for it. Even that will fade in time. Without risk, she would not be where she is now.

But I have strayed from my point. I was talking about orthopedics, and how they finally scheduled Namine’s foot repair. So Namine had her foot repair last month, but things did not go as smoothly as planned. The plan was to do one surgery, one casting, and that would be it. She’d stay casted for 8-12 weeks or so, then get leg braces. But her feet were not able to be rotated all the way; the arteries in her feet were too weak to get enough blood to her newly positioned feet. So her feet were only partially rotated, and needed to be rotated a little bit more each week.

Namine’s feet need to be moved and recasted each week, according to the ortho doc, because otherwise they will set in the position they’re in. If that happens, they will have to start all over again.

And this leads me (finally, right?) to my point. Last week Monday, Namine’s ortho doc told us that his office would be contacting us regarding this week’s appointment. It would most likely be the same day, same time each week, since this has to be a regular thing for the next 10 weeks or so. Well, the week passed by, and there was no word from ortho. When Friday came and there was still not a peep from them, both Jessica and I called them. Neither of us was successful in reaching a human, so we both left messages to call us back, leaving both of our cell numbers, plus my work number. Nothing.

This morning, Jessica called them. She just got a machine, so she left a message with all three numbers again. I called a little later in the morning, and behold, I actually managed to speak with a human. Imagine my surprise when the nurse told me that not only was Namine not scheduled for any time today, but also not at all this week. It was at this point that I started swearing. So no one bothered to schedule Namine for the OR, and we won’t know until tomorrow when they’ll be able to do the recasting, not to mention when she might actually get in for the procedure. I can only hope that they don’t wait too long.

Husband. Daddy. Programmer. Artist. I'm not an expert, I just play one in real life.


  1. I’m sympathetic. And far enough away from any experience like this to have ‘forgotten’ the anger that goes with it. Allowing me to say, no one cares about Namine like her parents (duh) and no one else will take responsibility for her medical care.

  2. Indeed you are, Paul – I meant to reinforce that. That expecting the ortho staff to take responsibility will result in continual disappointment if not anger and misery.

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