Tuesday, August 21, 2012

Ticked off!!!

Okay, this is fresh so watch out people.  You've been warned.  I may not be so nice.  We all know Bojan is an aka(above knee amputee) and has a congenital clubfoot as well.  He's had multiple surgeries.  For the last 2 years he has literally begged for it to be cut off.  He uses the word whack it off but whatever.  He had surgery this past March I believe it was.  It was suppose to fix his leg once and for all.  I was assured.  Ha!  But, we went into it optimistically thinking we could save his foot.  Came out of it a few months later and toes were still crossed and much pain.  Was assured toes would uncross over time and pain would go away.  Nope!  Pain is not in the toes but ankle, up the leg, etc.  After visiting our doc last week, she agreed he has a serious circulation issue.  As does our prosthetist.  So, went to Duke.

Warren gets to Duke.  Waited hours to be seen for his appointment.  No, not a misprint...HOURS.  Doc said give him a lift.  What?!  Are you kidding me?!  He's had a lift before and they do absolutely nothing for him.  Not a bit.  Nothing.  Nada.  Zip.  Circulation issue.  Doc said if your ped thinks it's a problem, she should write a script to get it checked out.  Are you kidding me buddy?!?!  You are the one who did the surgery.  Circulation issue came up after surgery.  You are responsible. Own it.  Fix it.  URGHH!!!  So, purple foot, numbness, severe pain are apparently not a concern for Duke Orthopedics.  URGHH!!!  I am ticked!!!  Can  you tell?! 

So, after hours, we have a script for a lift and nothing more.  This doc is not concerned at all w/ this patient's quality of life and how he has been in constant pain for years.  And now we have circulation issues on top of that.  What are they thinking?!  Seriously, I don't understand.  Bojan starts school next week.  He'll be on it all day.  Not sure what we can do for him at this point.  Raleigh Orthopedics is out as they were the ones to do the first botched surgery job on 2 of my kids.  Leaving Alyona's arm permanently damaged.  Bojan's just wasn't right.  So now what?  Bojan is in pain every day.  This is just not right.  I'm still brewing and will simmer down tomorrow and think more clearly, I'm sure.  I'm calling our prosthetist and asking for advice on what to do from here.  All we've told and shown are extremely concerned w/the circulation issue.  Well, all but Duke.  Lovely. 

Okay, need to leave that topic and get onto another maddening topic for the day.  School.  We've decided to take Alyona out as I said in another post.  She'll be homeschooled again.  Today was orientation for the high school.  I took my kids as well as 2 neighborhood kids w/ me.  We all split up.  I found the special ed coordinator and we had a good conversation.  We have a possible solution for Max's schooling.  He will take an online course in school.  They have changed the curriculum this year.  2 have talked to me about putting Max in the OCS program.  I just don't think that is the right course to take at the moment.  So, waiting it out and re-evaluating in a few weeks for an IEP meeting.  Talked to some of Yana's teachers as well regarding placement.  Irina saw some of her old teachers.  I'm not so on board this year w/ everything.  Not sure how this semester will go but watching closely for sure.  Younger kids did well but by 7 we were all ready to go home and eat.  Warren and us got home at the same exact time.  It's now 8 and we're just starting to cook dinner.  Kids are all bathed.  Well, tons more to do this evening.  I will have pictures up at some point.  As you can tell, other things are taking priorities right now.  Next appointment at Duke is December 11th.  I can't say whether or not we're going.  At this point, it's a waste of a co-pay in my opinion.  Time will tell.  Like I said, this is still fresh in my mind.  I'll be nicer tomorrow.  you know, after I call the ped to get a script for a doppler and after I call the prosthetist for his opinions. 

3 comments:

  1. Hospital for Special Surgery in Manhattan, NY. They have done the majority of my 50+ surgeries.

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  2. Have you looked at RSD? Reflex Sympathetic Dystrophy? My brother in law has it after a knee replacement. He is also begging to have his leg amputated. RSD appears to be a circulatory issue but it is NOT! It is severe damage to the nerve endings that are CONSTANTLY transmitting pain. My BIL's foot and lower leg are reddish purple, almost bruised looking. It looks like he's had a rubber band around his knee for a month. There are very few doctors who are familiar with RSD.

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  3. DEFINITELY have it checked out for RSD. Have you considered having him seen by Shriners?

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