Advocacy in Action

Today we have, what I hope will be, our final court hearing to overturn the insurance company’s denial of Oliver’s g-tube supplies.  I’ve been embroiled in this battle for months and I am very much hoping that the judge can see what an unnecessary waste of time this entire thing has been for all parties involved.  

Hundreds of pages of court documents for this (ridiculous) case so far.

I’ve been awake for nights, rehearsing this fight in my mind, wondering if they are actually going to try to make a case against Oliver’s most basic needs.  It is just beyond me why they continue to deny this.  I know, from an unfortunate amount of personal experience, that our insurance, aid and healthcare systems make a giant game out of medical care. My brain knows better than to take it personally.  But the brain and the heart sometimes operate on very different planes of ‘knowing’ when a child’s life is concerned.  

So, I’m finding it difficult to go into this hearing from a place of cool neutrality instead of firey hate.  Below is the statement I’ve prepared.  I wrote it down because I know I will be too filled with rage to properly form words in a calm and collected manner.  My statement is far from professional. I know it’s too emotional and dripping with passive aggression.  But I’m not a lawyer.  I’m a mom. And this is the raw and honest truth about the kinds of battles that parents like me are forced to fight every single day. I wish the system could see the brokenness in itself but I know that that is an idealistic impossibility. So instead, I will simply hope that the court will see the truth today, and rule in our favor so that we can put this ridiculousness behind us.  

Wish us luck today friends. 

________________________________

Thank you all for being here today.

I am fully aware that telling people they are wrong is not a good way to make friends.  Luckily, though, I am not here today seeking your friendship, only your intelligence and ability to see the error in your ways regarding this denial of my son’s life-sustaining g-tube supplies.

My son’s name is Oliver.  Please take a minute and let that sink in.  He is a child.  Not just a number in the cattle herd of your insurance clients.  He is a human, who honestly, got dealt a pretty rough hand that we work relentlessly each and every day to play.  Oliver sustained a catastrophic brain injury at birth.  This resulted in a long list of permanent life-long disabilities, one of which, is dysphagia, or difficulty swallowing food and liquids.  This condition puts him at danger for choking, pneumonia and failure to thrive… all of which he’s experienced.

We tried and tried for 30 days in the hospital after his birth, to feed him by mouth.  But eventually it became clear that we had a very serious decision to make, place a g-tube or let our son die of starvation.  We chose the surgery with the hope that one day he would be able to sustain his own life without it.  That day has not yet come.  

We have worked tirelessly over the years with therapists and on our own, to get Oliver to the place where he can enjoy eating some pureed food by mouth.  Eating is one of the only activities that he can actually actively participate in and so we sacrifice the time and energy to allow him that pleasure.  Spoon feeding Oliver a meal takes over an hour. The consistency has to be perfect.  His respiratory health has to be perfect.  His dystonia has to be dampened enough by the drugs to allow his jaw to open.  If ANY of these conditions are not right, he cannot eat. Some days, his body just can’t coordinate the complex movements that allow a person to chew and swallow.  Some days, he chokes repeatedly.  Some days, he has pneumonia.  And during those times, he cannot eat, and we depend fully on the g-tube.  

Hydration is an entirely separate issue for Oliver.  He has never been able to drink liquids safely by mouth.  He’s had 2 swallow studies and has not been cleared for liquids during either.  Every ounce of water and he’s taken into his body during his 5 years on this planet, has been through a g-tube. Similarly, all medications, of which there are many, must be administered through the tube since he requires compounded liquified medication instead of pills.  He would literally die without his port and the supplies that allow us to use it.  

Amerigroup has been provided with what should be ample medical documentation from Oliver’s Gastroenterology team, justifying his need for these supplies. It is beyond me why they continue to be denied.

Let me be very clear.  We never EVER wanted our child to have a g-tube.  It was completely against our ethics to sustain life artificially.  But it’s funny how those views can change when it is your own child.  If I had any real choice in the matter, I would NOT be here today, requesting plastic syringes, wrapped in more plastic, to go with plastic tubing to artificially feed my child through a plastic port surgically implanted in his abdomen.  I would gladly take your denial and run for the hills away from a life that seems like way too much.  But I am a mother.  And I will fight for my child.  So here I am, with an outrageously simple request to please approve the supplies that allow Oliver to live his life, however unnatural it may be. 

Please excuse the seething tone that is surely the undercurrent of my voice as I read this letter to you.  My rage is thinly veiled and my patience, tried.  It takes every single bit of my body mind and soul to care for my son’s needs.  Wasting my energy fighting the cold-hearted and ruthless machine that is our United States healthcare system, taxes the very last ounce of my fortitude. It will never cease to amaze me how the same system that so willingly saved my son’s life, continues to make it painstakingly difficult to sustain it.  

2 thoughts on “Advocacy in Action

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  1. You are a mom who is doing everything she can to give your son the best quality of life. Do not ever give up being his advocate. You are his lifeline because he cannot speak for himself. I am amazed at what a dynamic woman you are. My prayers and thoughts are with you always. You are strong, you are invinsible!!

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