Speaking up...

Sofie went back to school today, like a lot of children.  Only she hasn't been to school since November 8th.

The school and I have a notebook we send back and forth everyday in her backpack.  Since Sofie can't talk, the notebook talks for us.  Today I wrote in the notebook to please limit her walking, as her right foot/ankle is strained.

If you were to look at her right foot/ankle, without her brace, you would see that her foot takes a sharp turn inward at the ankle bone.  Children (and adults) with cerebral palsy often have this and she is prone to injuring that foot just because of its awkward position.

She was walking pretty well until the other day, when we went to get Botox.  A special doctor injects botox into some of her leg muscles which relax the muscle and interrupt this constant 'messaging' that causes the muscles to contract, and her foot to turn inward.  Before we get the injections though, the physical therapist lays Sofie on the table on her belly, takes a goniometer (looks kind of like a protractor) and tries to 'stretch' that ankle to get the foot into what every therapist dreams about...the 'neutral' position.  Now I don't know why we do this every time exactly, but we just go along with it.  This time, though, the therapist pushed really hard against the sole of her foot, and even grimaced while trying to stretch it out, and Sofie started to cry.  Sofie doesn't talk, but she will cry if she's in terrible pain.  Shots, IVs, and blood draws don't make her cry.  And this did.  I told the therapist she never cries and it must be hurting her, but she continued.  I finally whisked her long little body from the table and grabbed her and held her.  It took a few moments for her to stop crying.  Eventually she did, and the therapist measured the other side, which has much less tone.

The doctor came in and completed the injections, and we were soon on our way out the door.  Once outside, I put her braces back on so she could walk for a little bit.  I put the braces on, stood her up, and she collapsed, like a broken marionette.  I tried again, and we had the same response.  By now, I am breaking into a cold sweat and panicked, because she wasn't walking like this 30 minutes ago.  I decide to go downstairs, and get a Coke and a brownie (something we always do after Botox) and then, if she's still doing this, I will freak out.

The Coke and brownie did nothing to cure the situation, and I freaked out.  I took her back up the elevator to the doctor's office, which is full of pediatric patients waiting for the same shots.  I told the nurse something was wrong, we had just gotten Botox and now she can't walk.  The nurse magically found an open room (probably to get us away from the others) and the doctor came right in.  I was panicked, and told the doctor so.  She started to panic a little too.  I said 'maybe we gave her too much Botox'.  She responded she gave her what she always gives her.  I then said 'maybe she's having some serious adverse reaction.'  She said normally the Botox doesn't kick in for about 5-7 days.  She wanted to put her in the hospital to observe her for 24 hours, but I wondered what that would accomplish, since that would be well within that 5-7 day window.  And we had just gotten out of the hospital not long before that.  I told her no, that I would be taking her home.  I know the doctor didn't agree with my decision, and she told me so.  But as the exchange continued, I started to piece together that she was probably injured from the stretching, and told the doctor to tell the physical therapist to be more careful.  I was really upset.

We went home and I replayed the visit in my mind.  I have a policy of sleeping on an issue before making a call or sending a letter I might regret.  Bright and early that next morning I called the physical therapist's office and left a message.  I breathed a sigh of relief that she didn't come to the phone, because I wasn't quite sure what I was going to say.   She called back, and I told her I think she hurt Sofie.  She paused and apologized and after much back and forth, said we could always refuse to have the ankle measured.  And I countered that perhaps she should ask the parent or caregiver how the child expresses pain, because they never have.

I appreciate it that she apologized.

But the whole incident reminded me of a couple of important things.  We always do have the right to say no, as patients.  We had the right to not have the therapist try to bend her ankle into a position it doesn't want to be in, but she wasn't going to tell us that.  The other point is that when someone hurts you, you should let them know.  Maybe not the all the little hurts, but definitely the big ones.  As assertive as I can be sometimes, I also don't like to hurt people's feelings.  It stressed me out to call the therapist, but I am glad I did.  No matter how long you've been doing something, you can always do better.  And no how matter how many Botox appointments we've been to, I could have done better too.