Thursday, September 1, 2011

There is no COMPROMISE in your childs care

As our group has spread out to different centers you wonder how the care would differ from center to center.  The casts are all applied very similar, taped the best they can, & the kids are all given similar reports.  We are spread out from Chicago, Cincinnati, Greenville, Salt Lake City, Kansas City, & our newest friends are in Halifax & the UK.  At some centers our kids have wonderful advocates who are there for the parents as well as the child.  At other centers you go with the flow and hope to not have to confront any hiccups in your child's care.  We have some of the greatest minds in the country in regards to Infantile Scoliosis caring for our children's spines.  Who is advocating for their spirits? 

A lesson I have learned early on in William's care is there is no better advocate for William then Chad and I.  This is one aspect of his care that isn't open for compromise.  I have been told by some that we are very lucky to be at a Shriner's hospital and I feel this is absolutely true.  They have some of the greatest minds and technology at their disposal and the majority of the staff is what I would consider world renowned.  Gwen loves each of her babies with all her might.  She is a fierce momma lion when she thinks something is not right with their casts.  Linda is a constant level of support.  She is the wipe your tears kind of mother figure who keeps us moving through the months and years of care.  Tom always there with a smile and kind word when your child visits radiology.  Dr. Bonisara has always been our friend in anesthesiology who would just assume carry William to the OR as make him ride on his bed.  Ruby is the crazy eight in the pre-op with her happy juice and silly hand puppets.  There is the sweetest PACU nurse who never forgets a face or a set of chompers who for the last 5 casts since being bit by William as he woke up always says there's my little biter.  There are countless other faces and names to go with stories of our journey at Shriner's.  When something goes awry in the process it is hard at times to want to stand up for your child because everyone is so wonderful. 

I want to set something straight.  There are those out there who say you shouldn't complain because everyone at Shriner's Hospital is a volunteer.  OK so let's address that for a moment.  Shriner's is a no fee hospital.  Up until 2011 they relied solely on donations to keep their centers running.  In 2011 they made the switch to an insurance only facility.  This means they bill insurance for your child's procedure but will not balance bill the family for cost not covered under your plan.  It was a big move that has caused some of the changes we have seen at our center.  The staff at Shriner's and the staff doctors are paid employees of the center.  The Hospital is a wonderful place and I firmly believe we should be spreading the love they are giving and raising as much money as possible for our centers.  It however doesn't mean I shouldn't advocate for my child when I find something that isn't in line with how I feel his treatment should be handled.   

So what is the answer?  I pose this as a real question to all our LCC families irregardless of what center you are using.  If we see something that is not in the best interest of our child should we speak up?  Who should we approach and how should we approach it?  What are the important things to advocate and what would be considered petty?  I know this seems such an odd post, but it in the here and now.  I would rather we as a group come up with a game plan so future families will not have to tackle this obstacle.  Love to all! 

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