Saturday, July 20, 2013

Kids are suppose to feel pain!

(warning--graphic photo of her incisions farther down this post)

TingTing had 7 or so vials of blood drawn, then she had to do her pulmonary function test.  Part of that included an arterial blood gas baseline.  This involved the technician drawing blood from the artery in her wrist.  She spent about 3 minutes trying to get hit the artery on Ting's left wrist.  When that didn't work, she moved to the right wrist.  After a couple minutes, she hit it.  

TingTing did not cry, did not squirm, and did not need me to hold her AT ALL.  She sat there with her arm out.  Just sat there.

She didn't cry or fuss in the hospital. 

Today is day 4 post op and she only took 5 cc of Lortab at bedtime tonight. And she didn't really ask for it, just a simple statement that her back hurt just a little so I gave her a low dose to make sure she could sleep.

Think for a moment if your child had these things done.  Do you think he/she would cry? Need you to hold them down to get bloodwork? Lay there and let them cath her with no sound or movement and no one holding her down?

If so, why is it so brave of TingTing to not need someone?

The number of times we heard how brave she was, how tough she was, what a big girl she was...

She's not, well she may be, but more than likely this is due to 2 things:

1.  A learned response--It's not unusual for orphans to learn early on that it doesn't matter.  Crying doesn't elicit the response God created it to get.  Hey, I need someone.  No one comes.  They learn it's a waste of effort to cry.  It won't matter.

2.  It is also related to Sensory Integration Disorder (SID).  Some individuals don't register sensory input in a neurotypical fashion.  Some are hypersensitive to sensory input (loud noises, bright lights, touch, pain... send them into a tizzy).  Others are hyposensitive--they need more intense input to register what a neurotypical person registers with normal input.  This would include pain.   We did a neuro-reorganization evaluation the week before surgery and the therapist noted that she seems to have rather low response to pain.  This also shows up in being able to empathize with others.  Example when a cat has gone missing or we find a chicken dead, she smiles and laughs, and wants to keep talking about it all day.  If she can't feel pain, she can't empathize and respond appropriately.  If it doesn't hurt her, it doesn't hurt anyone.

So... all that to say.  Kids are suppose to feel pain.  It's not "normal" for them not to.   I feel God gave us pain to protect us from more serious damage.  We need to feel pain.

We've got occupational therapy, speech/language therapy, and our newest addition neuro-reorganization therapy going on to help TingTing become better regulated and function at her best.

There's so much more I want to share about TingTing, but I need to figure out how much to tell and what.... (I'd love advice on how you know how much to share about your child's issues and needs.)

Oh yeah, here's the photos I warned about:

This spine X-ray was done in December.  It had gotten SIGNIFICANTLY worse since then.  It was about 40 or so degrees here.  The most recent one was about 65 degrees curvature. (The main curve, there was a secondary above it, but it was smaller.)
Spine x-ray the day after surgery.  They believe they got it down to about 30 degrees and the upper curve is starting to straighten itself.
Here's her incision sites on Friday morning before they discharged us.

Here's a video of TingTing walking today.  Her right shoulder is so much lower... and we're noticing the leg length difference more.  When she takes a step with her left leg, she lifts her body up to where her right foot almost doesn't touch the ground.  You can't see it as much in this video... I'll try to get better tomorrow.

1 comment:

Marjorie said...

I totally get where you are coming from. I want to scream and pull my hair out when medical personel tell me how "brave" one of my children is being. :/ Most people are clueless about the effects of institutionalism. (((hugs)))