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Tuesday, February 7, 2012

Surgery Scheduled

Erika made the brave decision to have surgery to remove the plates and pins from her hip, and tho have the bone trimmed back on her left stump.  
I am really proud of her.  At first, she just said, "No".... 
Then we talked it over about the ramifications of her decision.  Was she willing to live with pain in her hip, if it could be eliminated?  Did she want to have continuous problems with fittings, if we left the protruding bone on? 

After about a week of thinking about it, weighing the pain, because it IS painful, weighing the long term ramifications, she made the mature decision and opted for surgery.

I know that some do not agree with our decision to include our children in this process and believe we should make those decisions period.  I would like to explain why we Do.

The surgery is not life or death related.  It is more for function.  If she needed emergency heart surgery, that would be a different story, and I do believe she would opt to save her own life.

I used to take care of a woman many years ago, when our boys were little, who was  quadriplegic.  She was in a wheel chair.  It is a long story how we came to meet, but let's just say our first meeting was rather sad.  Her aide left and didn't come back. She was living in an apartment alone, and needed somebody to take her to the bathroom. It had been 24 hours. 
She knocked on my door and said, "this is an odd question, but can you take me to the bathroom?" And then she burst into tears.  
That began a relationship we had for years. :)  I became her aide until a replacement could be found 6 months later, and then I became her aide again for the same reasons.  She lived with me for awhile until we found a permanent solution for her. 

During the time she stayed with me, she told me about the surgeries she endured, and how she felt she didn't have a voice over her own body.  She said everything was decided without her.  And she resented it.  Her wise words to me were, "Don't do that to your kids".  So I didn't.  It really is that simple.

As our son grew up, he had surgery at 5 and surgery at 6.   The surgery he had at 6 was nothing short of a disaster.  He had bilateral femoral osteotomy and aductor releases, to help the scissoring of his legs so he could walk better after the heel cord surgery.  The pain medication was not written into his order.  So, after waking up from surgery, he went 4 hours without any pain meds..... THEN, the wrong dosage was given and he suffered greatly.  I finally went to the director of the hospital in his office, and asked him to please come with me because I was so worried.  Let's just say a few heads rolled and he was given the proper meds.  This was a long time ago, and YES, I do believe care was not taken because our son was handicapped.  I can't imagine how much more it would have effected him, had he had zero say in the process.

We moved to Texas a couple of years later and Tim started going to Scottish Rite.  The thought of surgery made him shiver with fear.  He really did need one more... but we waited.  We let him know that he didn't have to do it if he didn't want to.  It was HIS body.  Just giving that small amount of control, empowered him to make the decision a few months later.  Not only was he mentally and emotionally prepared, he went home in record time.  In fact, he only missed 2 days of school.

I believe our children can recover faster when they are included.  I also believe emotional health  and a happy outlook on life, is WAY more important than trying to improve our bodies.  I remember my friend's words, as I listened to her recall the  pain and emotional scars of her memories as a child who was not treated as a person.
Erika's body is never going to be perfect.  She will never move freely on this earth, or have proper use of her legs.  She will not be able to bend.   So the purpose for this surgery is to keep her out of pain in the long run both on her hip and on the stump and to make it easier to fit her for prosthesis.

I want to always strive to treat my children  with the dignity and respect they deserve.  And a good lesson for our girls is that their body is THEIRS.  This lesson has many other applications.

15 comments:

Holly said...

Having read your explanation of why you include your children in these types of decisions, I cannot see why anybody would think you weren't doing the right thing! It makes total sense to me!

I hope Erika's surgery goes very smoothly. :)

Muddled Muse said...

Let us know when the surgery is scheduled! I'll be praying for Ms. Erika!

Hevel Cohen said...

As someone who was left out of all medically related decisions concerning me, I can't see how leaving your child out of such deceisions can be good in any way. And congrats to Erika for making the decision!

Mike and Christie said...

Her surgery is scheduled for February 23rd. Thank you for praying!

I totally agree Hevel.
Thank you Holly. :)

Michelle said...

I haven't been to your blog in way too long! I've spent so much time on FB, I just want to have a "like" option on each post! I would have clicked "like" on this one :)

L said...

Bravo for you and for Erika! My son recently underwent a minor surgical procedure and the doctor was so impressed by his participation in the conversation about whether or not to do it. She said she'd never had such a conversation with a 13-year-old. Truthfully, had it been my choice (or my body), I would not have done it. But he wanted this issue taken care of and he recovered really well.

Chris said...

Yeah, our son "should" have surgery to remove a scar that is causing his wrist to pull down...but the Dr and we are letting him make the decision to do it...because it will involve 3 weeks of being even more disabled...
The bone overgrowth that he is dealing with, was given as a "this is the best option so you can keep improving" by the doctor.

It is very hard to know when to say...this is something we will wish we had insisted on- say 20 years down the road.

Chiara Elena said...

I think it is important to ask, and help children to take the right decision, since the surgery is very painful, I think they will accept and fight more easily what they are going to face. The surgery (and pain) will be a choice, not something you were forced to.

Annie said...

I agree with Michelle; so often I want a "LIKE" option!

I would feel one way about children who are too young to understand regarding something that could not be put off - but your girls are certainly of the age to have a say, and particularly about something that is not life-threatening....even then....

ko said...

You are a wonderful parents! I must say as a child who grew up with many medical issues that required many hospital stays and surgeries (mine where not an option) this is spot on!!! I slowly found my voice. And to this day, I researching, etc the best options! You are giving her the right tools. You are also giving her the best confidience to deal with the medical field, which can be scary, and feel so out of control! BRAVO!

schnitzelbank said...

My husband had several surgeries as a child. Some were completely "sprung" upon him -- he would be picked up from school and dropped off at the hospital. Or would be taken to the hospital, when he was expecting to go to school. Worse, sometimes no one would come to visit him. It was so frightening for him.
I appreciate you sharing this wisdom with your readers and I am wishing Erika all the best! Is there a way we could send get-well wishes to her as she recouperates?

MariaG said...

Yes ... can we send a little something? Will you email the address? 'Wishing you all the best Erika :-)
MariaG (Canada)

Mike and Christie said...

Maria, can you email me at c.minich.bclc@verizon dot net
and I'll send an address you can mail to. Thanks :)
That is so sweet!

Katie - a Blessed Mommy! said...

When is surgery scheduled for? We will definitely be praying!

Erika is so mature (seems to be the case with our kiddos who must deal with such difficult issues, huh?)

What great advice - thank you for sharing. Over the past year, we have begun to include Will on some of his care. It's hard with his age as we don't want to persuade him but I always ask him (in front of his docs) if he has any questions. And he ALWAYS does! It's interesting to see how his doctors (even as pediatric specialists) regard a young child questioning them. I'm very interested in their responses and when one tries to direct their answers to me or ignore him or blow him off, I try to redirect them back to focusing on my child and giving him the answers he deserves.

We've so struggled this year as Will told a doctor he wanted a surgery to accomplish a certain goal and the doctor told him it was possible and then at our pre-op appointment, another doc came in the room and shattered all the plans. I'm still not over it as it breaks my heart to have to tell my little boy it's not happening any time soon...

arg - navigating this world can be tough sometimes.

Thanks for sharing such great, great advice! Katie

Mike and Christie said...

Katie, you are so wise to include him! I remember when Tim was 5 and 6 he had two surgeries. The second one was a doozie. He thought he was going to have surgery and just get up and walk. It was a 3 year recovery for him and it was just NOT explained that well to him or to me. It is so hard on them.

Erika's surgery is scheduled for February 23.

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