Trach/vent clinic, then recasting

I’m sitting here at the hospital waiting for the valet to bring my car back, so I figure I’ll start tonight’s post. I really don’t like making longer posts from my phone, but it’s either this or keep hitting “refresh” in TweetDeck.

I’m sitting here at the hospital waiting for the valet to bring my car back, so I figure I’ll start tonight’s post. I really don’t like making longer posts from my phone, but it’s either this or keep hitting “refresh” in TweetDeck, and since the 24-hour autism event at The Coffee Klatch ended earlier today, my stream has a lot less to read.

I started the morning expecting to call orthopedics, hoping to not have to yell at too many nurses, but perfectly willing to none the less. Jess, our nurse, and Namine were already at the hospital, since Namine had a trach/vent clinic, and by the time she called me, much had already transpired.

First off, trach/vent went fabulously. It was our last one! As Namine no longer has a trach, they don’t need to see her anymore, with one caveat: she has a few sutures (which are supposed to all dissolve on their own, but you know how that goes) poking out of her neck; if they continue to persist, we’ll have to get them removed. Here’s me crossing my fingers.

Anyway, after The World’s Best Trach/Vent Clinic Ever In The History Of Namine (as I have officially dubbed it), Jess got a hold of orthopedics to try and figure out what they could do, and when.

As we left it yesterday, someone from ortho was going to call us to let us know when they would be able to get Namine into the OR to reposition her feet and recast them. Jessica called me this morning to tell me that they had no OR time available for Namine today, and maybe not even tomorrow. At any rate, they were worried that waiting until tomorrow may be waiting too long, and that her feet would already have been set in the position they were in for too long; the ortho doc would have to start all over, beginning with breaking her feet again. They could possibly get her in the clinic today, more definitely tomorrow.

I took a moment away from work to think. Today, or tomorrow. Most likely, no OR time at all. It’ll be in clinic no matter which way you slice it. It would be better to do it today. All the choices suck. There’ll be pain, no matter what. Can’t wait for OR time to open up. Yes. Do it today in clinic. Makes me sick, but it’s gotta be done. Get her through it, then make sure it never happens again.

I was about to call Jessica back to tell her what I had decided, to see what she thought, when she called me to tell me they were doing it in the clinic in ten minutes. I had that long to get over to the hospital. So I ran down the hall, poked my head in my boss’s office long enough to say “Gottagotothehospitalcallyoulater” and then sprinted across the parking lot to my car. (Due to Namine having to be at the hospital this morning, I was late to work, and so was parked at the far end of the lot.) I’m not sure how fast I drove. I’m pretty sure it’s a good thing I didn’t see any cops. I had a valet park my car, and I sprinted up to the ortho clinic. I made it there in five minutes.

I was disappointed that they hadn’t given her anything to offset the pain she’d soon be feeling, but I had no time to be mad at the nurses. My daughter needed me. I held her – and held her down – as the tech cut the casts open, as the nurses unwrapped the gauze from her legs, as the doctor recasted and repositioned her feet, as the nurses finished wrapping up her legs. From the time the tech first fired up the drill to about when the doctor finished up her right leg, which he did first, Namine cried. Screamed. Shrieked. Wailed. None of those words do justice to the noise that came from little Namine. She was in pain, and afraid. I don’t know how much was pain, and how much was fear, but I know that she didn’t understand why they were doing this to her. Why I was doing this to her. At some point in the middle of it, she looked at me (most of the time, she’d been looking at the nurses and doctor) and pleaded, “Haha, haha!” (Papa, papa!)

I tell you now, nothing, not even a knife through my chest, could cause me such pain. There are no words, there is no explanation. Just the simple question, “Daddy, why are you hurting me?” and no answer. Just keep holding her down, keep hurting her. If you’ve ever wondered what it’s like to hold a child down and break her legs, I’m sure I could tell you how it feels. I hate myself.

I know, I know. It’s for her good. It’s to benefit her in the future. But it was never supposed to be while she’s awake, dammit. She may forget the pain, when she’s older she probably won’t remember this time at all. But I will never forget the look in her eyes. My little love’s eyes, asking, begging, pleading me to stop. And I, looking back, ignoring her pain, held her down.

About the time the doctor finished up with her right leg, she became too tired to scream loudly anymore. She just moaned through the rest of it. I would have preferred the screaming. Screaming at least meant she was fighting, she had fire in her. The moaning was just a sort of resignation: you win, I give up. I don’t care what you do to me anymore. She kept moaning after they finished, until I was able to pick her up, cradle her, and sing to her. There were still tears and pain in her eyes, but there was also something else. There was comfort.

And when it was over (nothing last forever, joy or pain), I looked the nurse straight in the eye and I said we will not repeat this. From now on, you make sure she gets this done in the OR, with anesthetic. She does not need to endure this awake. I will not put her through this again. I’ll be damned if I put her through this again. I’m probably damned anyway. I’m certain there’s a special circle of hell reserved for parents who torture their children.

She was finally, blessedly asleep when I left the hospital to go back to work. I hope she’ll hug me tonight. I hope she forgives me.

7 responses

  1. There’s a special place in heaven for parents who do what’s right for their children EVEN when it kills them. ((hugs)) You’re doing a great job.

  2. Paul… we continue to pray for you and Jessica and Namine. The love you both have for your Namine is so evident!

  3. It’s outrageous that they didn’t give her some goofy juice for the pain prior to recasting. I’m sure she doesn’t perceive you as the person who is inflicting pain.

  4. Michele Eiche Avatar
    Michele Eiche

    they should have at least given her some oral pain meds. I am so angry at that clinic. They are such idiots. Do they have her on the schedule for next week now?????

    1. Yes, but we have more to say about that. Basically, all the choices suck. I’ll explain tomorrow.

  5. Paul, you and Jess are going to be in all of the good circles in Heaven… I have no doubt!!! I find myself nodding at all of your posts. Hence, I think I must agree with you on most subjects! Please keep us updated. We are getting spoiled with the daily updates!!! You are putting the rest of us to shame :-)

    1. I have an hour for lunch at work every day. If Namine isn’t in the hospital, what else am I going to do with my time? ;)

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