Orthopedic doc appt nightmare – Scoliosis

My 10 year old daughter has scoliosis.  She was diagnosed about 6 weeks ago and has been wearing a Charleston Night Bending Brace for 4 weeks.  She hates it and I do to.  But, I know she needs to wear it to correct her 20 curve or she will have big problems down the road.  Today was our 30 day visit back to her Orthopaedic doc – Dr. Stanton at the Nemours clinic in Pensacola, FL.  My daughter is an established patient of Dr. Stanton, as she broke her wrist in the spring.  When we went back for her 6 month wrist xray, she was diagnosed with Scoliosis.  So, we know the doctor, the PA (Leigh Diamond) and the Staff.  That is why I am so surprised (and hurt and shocked) by what happened today.

 We arrived at our appt on time.  Waited for a few minutes and was called back.  The nurse weighed, checked her height and temp.  While the nurse was doing this, I asked a few questions and made small talk.  She basically ignored me, but hey – she is busy.  So, I didn’t think much of it.  Then she showed us to our exam roon.  She opened a cabinet and pulled out a waded up exam gown (there were other neatly folded) and an old pair of ratty cotton running shorts.  She offered the garments to me and told me to have my daughter change into them and then put her brace on her for xray.  I took the exam gown from the nurse and asked if my daughter could wear the cotton leggings she was already wearing.  The nurse “looked down her nose as if nice were crawling all over my daughter” and said NO, she MUST wear the (nasty) shorts. 

SIDEBAR:  I don’t know the shorts were nasty.  Nor do I know how many people wore them since their last cleaning.  They might have been very clean, but I wonder only because they were waded up in the cabinet and NOT in the neat folded stack.

I took the shorts from her and wanted to ask if the garments were clean, but decided against it, as she was not acting very nice.  As she turned to leave, I asked her how was my daughter going to get from the exam room to the xray room while wearing her brace.  While in her brace, she is COMPLETELY immobilized.  Not movement.  The brace goes from below her hips to armpits.  NOt waist or hip movement.  Solid as a rock plastic frame is keeping her from moving.

So nurse asked, What do you mean, she can’t WALK to xray.

Me: No, she can’t get up or walk wearing her brace.

Nurse:  I tell the xray tech that you have to put the brace on in the xray room.

Me (in my head): OK, sounds good to me.

Not 10 seconds later, the PA (Leigh Diamon) walks in and asks:  What is this I hear about Olivia not being able to walk?

Me:  Olivia can walk just fine, but she cna’t walk or sit up in her brace.

Nurse:  We have students who wear these 20 hours a day, why can’t your daugher “walk” in hers. 

Me:  She “might” could walk if she were standing, but I put the brace on her while she is lying down.

PA:  Well, put the brace on her while she is standing up.

Me:  OK, I’ll try.  I’ve never done it that way before, but I’ll try.

This is the part that let me know I was in for trouble.  The nurse AND the PA, lean against the door frame with the arms crossed across their waist and watch me struggle to put on the brace.  They body language indicated to me that they were going to show me that my daughter COULD indeed walk while wearing a Charleston NIght Bending brace.  As we have only had the brace for approx 30 days, I started to dobt my self.  I thought maybe I am wrong, maybe I’ve let my daughter manipulate me into thinding she is unable to do something she can.  I didn’t think so, but these two professional women were making a point to show me (and by show I mean humiliate me) that they were right and I was wrong. So, I struggled to get the brace on my daugher.  Problem was, I ahve never put n the brace while she is standing up and I ahve never had to deal with so much fabric.  the hospital gown was billowing and the brace was TIGHT.  I struggled and my daugther moaned with pain.  The nurse and PA stood their and watched with their arms crossed.  They were going to show me.   I explained to them that I wasn’t trained (by the prothesis guy) to put the brace on while standing and I didn’t think I could do it (but, I did try very hard, or as hard as I could because I was so nervous and embarassed that they were standing thei disapproving me)  I think the whole situation could have been defused if the PA or nurse had offered to help me adjust the brace, but then they would not have been able to make their point, no could they?

Finally, the PA says:  Put it on her while she is lying down and I will help you get her up.

Nurse and PA leave exam room.  Thank you Jesus, the pressure was off.  I was sweating.  I am sure my blood pressure had risen and my face was glowing (with embarrasment and anxiety).  I fought back tears, because I didn’t want to upset her.  But, of course it was too late.  She is 10, not stupid.  She saw and heard everything that was said, verbally and nonverbally.  And, she knew she cold not physically walk (or move) in her brace.   Olivia layed down on the exam table and we dealt with the copious amount of fabric and got the brace on. 

The PA came in and said:  Well, let’s see if we can get her up.  Walked to the exam table and said, “OH, her brace does go down a bit more than I am used to.” 

I asked:  How do kids go to school in this and sit and walk?

PA admited, well, they were a different brace than this one.

ME:  So, she isn’t supose to walk or sit or move in this on?

PA:  Not usually.

Me (in my mind):  Whoppee, I am not a bad or stupid mother, after all.  But, I still felt like one. I heard no apology, nor did the attitude get any better.

ME:  How are we going to get her standing.

PA:  You swing her legs down and I will hold her torso.

We successfully stood my daugher up, but we scared her and she screamed while moving her.  I don’t know for sure, because I haven’t asked her, but I imagine you feel (and technicllay are) very vulnerable while wearing such a constricting brace.

PA walked Oiivia down the hall.  PA had to support my daugher, to keep her from falling over while walking.  You have to imagine, her whole body weight is thrown to one side and she has an odd center of balance.  Each step Olivia took, she grunted and said Ouch.  The worse part was yet to come.  As we walked (I liken it to the walk of shame) to the xray room, everyone in the office, patients and staff, were treated to a freak show.  Everyone stopped and stared.  I am so angry with myself that I allowed it to happen.  I am my child’s advocate.  It is my job to speak up when she can’t.  No adult would have let that happen to themselves.  I am in shock that I allowed it to happened to my beautiful daughter.  Even now, I can’t come up with an excuse.  At this point, I just wanted to get it over with and go home. 

Once we reached xray, we had another problem.  How do we get Olivia to lay on the Stainless Steel xray table?  The xray tech (who was great) and the PA leaned her back.  The PA had Olivia’s torso and the xray tech her feet.  All was well, until the PA dropped her and Olivia banged her head on the table. I can still hear the noise echoing in my mind.  Still. I said nothing.  It was too late.  Time could roll back so that she could be more careful.  She didn’t even apologize to my child. 

I stood in the hall, waiting for the xray tech and wondered – Why do people, who hate other people, chose a job where working with people is an important skill?  Why do people, who don’t like children, choose to work in pediatrics.  Afterall, I am at a pediatric orthopaedic clinic.

Then I wondered, why I am being treated so poorly? Is it because of the type of insurance I have?  Have I been labled as a secondary citizen?  My children have BCBS insurance that is provided by the State of Florida as party of the Healthy Kids plan.  It is not free.  I pay a monthly premim for my kids healthcare.  I ahve copays and the like, just like everybody else.  If this is how you are treated with Healthy Kids, how are you treated if you have medicaid or medicare (which I do not, nor never have)?

Or, do they treat everyone this way?  Or maybe, they just don’t like me? Or my daughter?  Or my shoes?

Xray tech tells me we are done and can go back to our exam room.  Olivia asks if she can remove the brace before heading back.  Xray tech says no because Dr. Stanton hasn’t seen her yet.  They made more sense to me than anything else I’ve heard at this office today.

So, Olivia makes her walk of shame back to the exam room and wait.  While waiting, I decided before I left, I wanted to speak to PA privately in the hall and mention the condesending tone, speech and body language that occured earlier.  I silently make a mental list of the issues I wanted to discuss with her.  And, I blink back tears.  I STILL didn’t want my children to see me upset.

PA comes in and tells me the scoliosis curse is doing well.  I was happy.  She asks if I have questions.  I do.

ME:   Olivia is not sleeping well in her brace.  Her grades are falling and I am very concerned.  What do I so? 

PA:  I’ve never heard of that happening.  Dr. Stanton has more experience with scoliosis than me.  Do you want to speak with him/

Me:  Yes, please.

Wait again.

Dr. Stanton comes in and tells me about her curve.  All good news.  I tell him the sleep issues and grades.

Stanton:  I’ve prescribed thousands of these braces and I have NEVER heard of grades or sleep as an issue.  It must be something else, because it isn’t the brace or scoliosis.

Me (in my head):  Bull crap, I don’t believe you.

Stanton:  That is why I schedule these appt 30 days about.  So these issues can resolve themself and I don’t have to listen  to it.  Any other questions.

Me:  Olivia is complaining about the tops of her thights hurting.  Is this brace related.

Stanton:  Finally a question worth my time.  And, he answeres the question.

He leaves.  Olivia gets dressed and I step out into the hall to speak to the PA.  Problem is, when I get mad, I cry.  It is uncontrollable.  And, to add insult to injury, the angrier I get, the harder I cry.

I told PA that I didn’t appreciate the condesending tone and body language earlier and that she could see that Olivia was not able to move around or walk (at lease not without assistance) and we didn’t deserve what happened.  Or, at lease I tried to say this while I was crying.

PA:  You have to understand, we see 30 patients a day who tell us they can’t walk and we KNOW they can.  She said a few other words, but I tuned her out because my thought took over.

ME in my head:  OMIGOD – you don’t like people.  OHMIGOD, it’s true.  Did you drop my child on purpose?  Did it make you feel good?  OHMIGOD, I let a sicko touch my child.  I gonna throw up.

We left the room. I never receive an apology.  Everything that happend to us was jutifiable because their other patients lie and are pieces of crap.

As we walked to checkout.  I told PA I wanted to talk Olivia xrays with me.  She said NO. 

Me:  They are mine.  Why can’t I talke them?

PA: NO, the xrays are not yours, they belong to the Nemours clinic.  You can only checkout xrays.

ME:  OK, I want to checkout Olivia’s xrays?

PA:  No, sorry, it is not our policy?

Me:  Who do I talk to to get the xrays.

PA:  I’ll find out. (I waited and waited)

PA:  YOu can only take xrays with Dr. Stanton’s approval.

Me:  No problem.  Let’s talk to him.

PA:  YOu will have to wait.

ME:  OK (I’m not leaving without them). And, I wait

PA:  You can’t take the original, but Dr. Stanton says you can take a copy. Problem is, the original is a tri-fold xray and the copy can only be a regular size.

ME:  (not happy, but ready to go home). OK, I just want the curve anway. (Her curve is betwen her shoulder blades).  And, I wait.

PA walks out and hands me the xray.  I take it and leave.  In the car, in the parking deck, I look at the xray.  It is her lower back and only shows a bit of the bottom of her curve.  I wonder, was that purposeful…..

Tomorrow, I am calling for an appt with the Nemours administrator.  Oh, and I’m posting this on my blog.

Shannon