Saturday, April 5, 2014

Update on Meara...

Meara's shunt is working. Most of the time there is no fluid in her scalp.

She is having seizures at night. When we had the EEG at the hospital she went the entire night without any but we've seen them at home. It's undeniable.

We haven't decided any next steps. Whatever the next step might be we won't consider a third resective surgery - if they would even suggest it. Most likely they'd want to perform a hemispherectomy but we don't feel that her quality of life warrants that decision or trajectory. We know a good deal of families who have made that decision based on their child's situation and seizure activity. It's not easy and we have the utmost respect for what they have followed through on to give their children the best chance to thrive.

If we pursue a next step it will most likely be CBD. It's off the insurance track and off the grid of her doctors at Children's Hospital. But we've exhausted all other methods - conventional drugs, diets, and brain resection surgeries.

Speaking of insurance. My school district (employer) informed me on Friday via email that our premium will be going up. Now we are almost $1,000/mo for the premium. Our out of pocket maximum also increased from $5,000/year to $9,000/year.

So with the premium increase coupled with the out of pocket increase we've entered a new level of "holy crap" when it comes to Meara's care. Although healthy families hope only to reconcile the insane monthly premium we also have to reconcile that Meara requires hospital visits, MRIs, EEGs, petscans, etc. at a minimum each year to monitor her epilepsy and to help decide the best approach for her care. In simpler terms, when they give us an out of pocket maximum for the year we know we'll hit it.

We hear the argument: "but you are a high end user so you should bear more costs." Or, "live a healthy life and you'll go to the doctor less." The problem with that argument is that 1) Meara was born with cortical dysplasia (a malformation of the brain) due to nothing that we did as parents during pregnancy. It is a rare thing that happens that we didn't cause ourselves nor is it genetic. Plain and simple, nothing could have prevented it. It just happens. 2) There is no amount of "healthy" living that will take these seizures away.

I'm a school teacher. $12,000 in insurance premium and $9,000 in additional health care costs (not including the copays for specialists and prescriptions) per year is a debilitating thing.  I guess what I'm trying to say is: what the hell is happening to our country when it comes to medical costs and so called insurance "benefits".  I can't even begin to wrap my head around it. All I know is that Meara's condition was not preventable and families shouldn't be destined to financial havoc for the rest of their lives based on the fact that their child needs comprehensive medical care for what could be their entire life. Could it be possible that we can do better as a nation?

So ending with good news. Meara rode her bike last weekend for the first time since her November 13 frontal lobectomy. She also swam at the pool twice this week and went down the slide. Shunt is draining. We have a good deal to be grateful for.

One day at a time. And I leave you with some Mumford and Sons:

"In these bodies we will live, in these bodies we will die
And where you invest your love, you invest your life..."

Megan bought an orchid for my parents in remembrance of Ben. We brought it to the funeral. It was blue and orange. Go Gators. My Dad showed it to me on Skype last night. He keeps it hanging from the tree in the front yard of their house. It has so many flowers that have bloomed. It's beautiful. His soul is alive and he's with us every day. Thank you Ben for teaching us that in these bodies we live and die, and where we invest our love we invest our life. Such a teacher you are to so many little brother. I miss you so much.

Peace to all,

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