Thursday, February 10, 2011

Lessons Learned

I have always been an outspoken person. When I was little I remember my mom telling me I would be a good attorney one day because I could argue with the best. Little did I know I would use that voice to advocate for my own child.

Over the last three years I have learned some lessons and intensified a few very important words in my vocabulary. It has been a process with an interesting learning curve but after yesterdays appointment I realized that I am acing the course.

When I look back at the beginning, the first five and a half weeks of Makenzie's journey, I realize how ignorant I was.

One of the first things I quickly figured out was what a "teaching hospital" was and stopped the "teaching" right in its tracks. I realize there is a time and a place for all of the said "teaching" but it sure wasn't when it was time to put narcotics into my fragile daughters central line. This was a lesson I learned when a student broke universal precautions at Makenzie's bed side with a sterile (or a not so sterile anymore) needle ready to be pushed into her veins. Uh no!

The day we were discharged I remember hanging onto each and every word spoken at the last care conference. I took Makenzie home later that day with all my meds and feeding instructions in hand. Months later I found out through FTT that everyone at that table missed the fact that the dietitian's orders were not providing Makenzie half as much food as she should have been getting. I was just following right along. This started my habit of always second guessing every order that has been written since.

I have learned that saying "no" to a doctor will not end with your face planted in the dirt.  I began practicing this early on when one doctor wanted to trach Makenzie 5 days after her injury and another wanted to do a FUNDO after just telling me Makenzie did not have reflux. I have said no to many medications and several surgeries. I have learned the art of research and hearing out why each doctor feels the way they do. I have gotten very good at asking questions to the point of driving some doctors bananas! I have also invoked my right to a second and third opinion to the point of being accused of doctor shopping.... hmmmmm.... really?

Persistence has become my middle name. If you don't disappear eventually someone will hear you and do what needs to be done. If you don't, your child, in the form of paperwork, will likely sit on a desk forever or darn close. I could write a list a mile long about this one because I probably make 20 calls a week to someone about something Makenzie needs. One that comes to mind is the wheelchair fiasco

I feel so strongly about advocating for the best quality of life Makenzie can have. I understand that doctors know more about medicine then I do but I know more about Makenzie then they do. I feel like in order to give my daughter the best life can offer there has to be give and take.

I, as her parent need to take responsibility to educate myself on what is going on with Makenzie. It is my responsibility to listen to what her doctors say with utter respect and then ask questions and talk to the other doctors and therapists on her team. It is a huge task and sometimes I get more information then I really want..... ignorance is bliss sometimes. ..... but at the end of the day I can rest in understanding of what Makenzie needs.

I feel equally that doctors need to then extend the same respect to the parent as the person who knows their patient best. They need to take the time to answer questions, educate and provide resources, and then give the care givers time to process and decide what is best for their child. Doctors need to start by seeing each and every one of our children as individuals not a diagnosis or a science experiment.

I am very lucky to have found an amazing team of doctors who respect me and the time I spend making sure I understand every aspect of Makenzie's care. Finding this team took a lot of work. It was all worth it because tonight while I sit and research muscle tone and how it relates to hip issues, I can look at all my options and know Makenzie's team in on my side. I know they will do whatever it takes with me to help make the best decision for Makenzie.

Oh how much I have learned! I just wish someone offered some kind of degree for all of this learning!

Believe... Prayer Works!


Anonymous said...

Amen, Amen, AMEN!! I could not agree with you more my friend. You are an amazing mom and advocate for Makenzie, & I have learned so much from you. No matter how hard we fight or how time consuming it is, it ALWAYS works in our favor, & that is what hard work and persistence, HOPE, FAITH & most importantly GOD rewards us with. You and Makenzie are such an inspiration to me, & we love you all deeply. I will call you sometime today. BTW, your pictures are getting AMAZING, I love the ones on this post m& I was so happy to see my favorite picture as the new header!!! She could light up anyones day. She is amazing, and so is her mommy. MUCH MUCH love!!!
Jami Poore (Izak's mommy)

Oatie - IWillSkate on Ice said...

Good for you,

what's ironic people in business pay $thousands to train management/ employees.. for self development, negotiating, reaching targets, being proactive, embrassing change and assertiveness, multi tasking just to name a few and well I know it wasn't by choice in our cases but look at how we were as people before and after... We see improvement in our kids but forget to look in the mirror.

Great post...

Love Mel x

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