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,

Thursday, March 20, 2014

Neurosurgery Visit and Update...

Megan took Meara for a checkup today with neurosurgery.  Things are looking on the up.  We've been wrapping her head with the ace bandage but less each day.  Now we are only going to keep it wrapped at night and let her be free of it during the day.  The fluid pretty much is draining.  Every now and then it'll build up a little down by her ear and cheek but then it will disappear…hopefully meaning that the shunt is doing it's job.  Booyah.

So, she is looking like regular Meara, acting like regular Meara, and we are living each day with optimism that this is going to be the next step toward reclaiming her childhood.  Not that she hasn't been able to be a kid throughout all of this…just hoping that she (and we) can do so without the constant trips/visits to the hospital.

I was listening to Arvo Part's "Cantus in Memoriam Benjamin Britten" for string orchestra and bell this evening.  Sat at the dinner table while listening and writing out a to do list for the morning…literally wept onto the paper.  And the to do list turned into this:

The bell tolls…and the ice melts, disappearing into the green grass.  An awakening, a rebirth…a capsule that dissolves into trajectories of new beginnings.  We are blessed.  We are strong.  We are weak yet determined.  We are…human.  Meara has given us a gift that we will be unwrapping for the rest of our lives…and we are grateful.

Saturday, March 15, 2014

Despite it's alright.

Since Meara's shunt revision the fluid did not go away, meaning the valve wasn't working.  In fact, the fluid built up significantly.  A week and a half ago, they did an x-ray and determined that there was air in the valve.  The surgeon manipulated the valve with his hands (on top of the scalp) and then sent her back for an x-ray.  The x-ray showed that the air had most likely gone away.  He sent her home to see what would happen.  What happened was nothing.  The fluid stayed.  

So, this past Thursday she went back in for a MRI and x-ray.  On Friday Meara was given anesthesia and the surgeon drained the fluid with a syringe with the idea that this would "reset" the shunt.  Basically, to equalize the pressure (in layman's terms). The surgeon concluded on Friday during the procedure and from the Thursday tests that the shunt/valve/catheters are in working order.

Meara is home and her head is wrapped tight in ace bandage and we just wait again…to see if this will finally work.

How can we begin again?  How can we just live in this constant yo-yo...called life? 

We met with Meara's kindergarten teacher on Tuesday for her parent teacher conference and IEP meeting.  Her speech teacher was also with us.  Both are an amazing gift to Meara and our family.  They exude love and embrace.  They treat working with children as a privilege and a great responsibility.  They also embody warmth and compassion.  These teachers are an inspiration and make me want to be a better teacher myself.

It always gives my heart a great deal of fuel for thought.  It catapults my mind towards reconciling why this world of ours is always searching for perfection.  I mean, the world is addicted to perfection.  Excellence, achievement, "rise to the top".

For what?  To be alone?  To suffer in loss of opportunity for friendship, community, experiences in life that aren't able to (or even shouldn't be) quantified?  What about the learning and personal growth that unravels when we decide how we respond to and embrace weakness…and failure?  You know, Meara's teachers don't want Meara to be "perfect" in the sense of academic achievement.  They want her to learn, and to love learning but you see, she was born her perfect self.  Is she "perfect" at anything?  Goodness no!  I'm not either!  But she's the perfect self that she was meant to be.  And one day I, along with Meara, will learn to love and appreciate ourselves as being the perfect "imperfect" individual that we are meant to be.  That means accepting, and forgiving ourselves.  

I am grateful for the women in my life.  The one I married taught me that acceptance begins with intimacy and vulnerability.  The other two that revel in childhood mirthfulness are still teaching me to forgive myself on a daily basis.  Every night before I go to sleep my adult, society trained mind starts the conversation about the failures I had as a Dad that day…but then, my heart turns towards these two beautiful, sleeping girls, and it says…just be there for them.  Just love them unconditionally without restraint for the rest of their lives.  And you know what?  I can do that.  And I'll do that perfectly.

Wednesday, February 26, 2014

Another Shunt Surgery

Last Thursday afternoon (Feb. 20) the valve of Meara's shunt slid to the front of her forehead.  It's not supposed to do that.  The following day Megan took her to Children's for a scheduled wound check and they performed an x-ray.  It confirmed that the catheter running from the valve to the empty cavity inside her brain had been pulled out.  Meaning the shunt was no longer performing like it should and draining the CSF.  So, they sent her home and said to wait and see what happens.

Then, on the way home from the hospital Meara had a seizure in her car seat.  The first one (that we know of) since November 25.  Megan witnessed it and Meara confirmed it when Megan asked her if she had one.

To say that we were crushed is an understatement.  It felt like being punched in the stomach.  Sunday was really difficult.  The lowest that Megan and I have felt in a really long time.  We were tired and drowning in exhaustion.  I think if you were to ask me on Sunday I'd say that time is a cruel cruel thing.  It can be a best friend or a horrible seething monster that is relentless in inflicting pain and glorified retribution.  All the worrying, all the strained minutes of trying to figure things out.  

It's like an arpeggiated melody that just won't come to a resolution.  It's beautiful at times, but overall you just want it to finally end.  Finally come to a place of rest so a new idea can be born.  We are ready for Meara to be healthy again.  We are ready to have some closure so she can start being a kid again.  So we can focus on doing things and living life with the average complications.

So Friday afternoon at 1:30 Meara will be wheeled back into the OR to have the valve reinforced and the catheter reinserted into her brain.  This will mark her eleventh hospital stay.  The week has slowly progressed to a better place.  Monday we started to catch our breath again and we started to pull up our "big boy pants" to get Meara through this next leg of the journey.  

So, if you ask me (or Megan) how it's going we'd probably reply "Let's revisit that question in a couple months, or a couple years".  For now, it's day to day and minute to minute…just one big dynamic roller coaster of hope that serenity is somewhere on the horizon.

Peace, love, and unbridled determination,
Aaron & Megan

Saturday, February 15, 2014

Staying another night, fluid building back up...

Staying another night.  From a neurological standpoint Meara is cleared.  Everything looks good except the fluid has built back up and they just want to make sure it doesn't get any bigger or that it doesn't spring a leak.  In some cases it could take time for the shunt to drain properly so it doesn't necessarily indicated a problem yet.  If the fluid continues to build then I guess we start discussing other scenarios.  For now, it is a wait and see.

Originally, we were supposed to go home this morning after rounds.  Ah. Nothing ever goes according to plan.

I did get her to walk to the bathroom this morning though.  And then I wheeled her downstairs in a wheelchair to visit the cafeteria and we ended up walking all corners of the hospital.  We were probably out of the room for a good two hours.  She wanted to stay out of the room.  That is a good sign I would guess.

While we are still here figuring out next steps with Meara, Ainsley is learning how to be a punk rocker from her friend, Mason.  Although, I'm realizing this might be considered her first date. Oof. Thanks Lisa and Martin for taking her in today!

We also want to thank Lumy and William for taking care of Ainsley all day yesterday.  She had a wonderful time playing with Rose...two peas in a pod they are.  Thanks Lumy for always reminding us that it takes a village.  Life is beautiful indeed.

Peace everyone. 

Much love,
Aaron & Megan

Friday, February 14, 2014

Shunt Surgery and Recovery

Meara's surgery went okay. The surgeon said the shunt was a little fussy, just because of the space, scar tissue, fluid area etc, so it took a little longer than they had planned but they got it in. Meara woke up in a lot of pain in the recovery room. She's been getting some narcotics to help with that. She has a total of six incisions, three on her head, one on her neck, and two on her belly area. She's getting IV antibiotics through tomorrow, and we'll see how she's managing the pain. She was in too much pain to get up and use the bathroom this afternoon. She's gotten more active throughout the evening. We've been playing tic tac toe, drawing, reading her valentines, and eating m&ms.  I'm here with Meara tonight. Megan didn't really sleep last night so hoping she'll get better rest at home. Last dose of IV antibiotic in the morning. Hoping they'll discharge sometime throughout the day.

Megan and I realized on Monday...this makes hospital stay number ten for Meara. In five years. Countless EEGs, MRIs, PET scans, SPECT scan, ketogenic diet, a few ER visits, drains, and four surgeries on her brain and head. So here is to our princess warrior who deserves a freaking break. Can't wait to see her back on her bicycle, going down the slide at the pool, playing at recess with her school friends, and having her birthday party. She's earned a childhood many times over.

And, good luck to any future boyfriend/mate. He better be some kind of amazing. I'll have some pretty high expectations and then some. I was thinking as she was in the recovery room today...that all I want in life is for her to be happy and to be loved. Everything else...well, is everything else.

Much love to everyone. Thank you for sharing in Meara's brave journey...

All our love,
Aaron & Megan

Thursday, February 13, 2014

Shunt Surgery Friday Morning

Meara's been on the subdural drain since Monday evening.  She had to have an IV put in Tuesday evening to put her on saline drip because she wasn't peeing enough and hadn't eaten much either.  They just wanted to make sure that her sodium levels didn't drop enough for her to have arrhythmia.

She's been doing fine.  I stayed at the hospital last night to give Megan a chance at sleeping at home and to get some time with Ainsley.  Meara's been throwing up a bit this morning but it's probably due to the pressure change in her head. 

The neurosurgeon said this morning that we are going to go ahead with surgery tomorrow.  Cultures have come back negative for infection.  That's good news.  The surgery is scheduled for 7:30 tomorrow morning (Friday).  She will be wheeled down around 6:00am.  

Megan and I will both be here for the surgery.  It will take about two hours from start to finish.  I believe that approximately forty-five minutes of the time is the part actually installing the shunt.  We are hoping that with a strong recovery Friday and Saturday that we can be discharged sometime Saturday.  Wishing for fulfillment on this outcome.

Thanks everyone for the positive messages of support and encouragement.  It gives us strength and Meara feels loved beyond limit.

What would I do without Eddie Vedder.  Love this line from his song Guaranteed

"Got a mind full of questions and a teacher in my soul…And so it goes."

There it is. 

Love to All,
Aaron & Megan