Wednesday, August 14, 2013

Surgery Date

Hi All,

We have a tentative surgery date of Wednesday, November 13.  Meara will be admitted that day and have resective surgery of her right frontal lobe.  It is one surgery (not like the two surgeries requiring grids last time) so she'll be moved to the ICU after surgery until she is stable enough to be moved to a room for recovery upstairs.  We should count on a week at least up there for physical therapy and for her head to start healing.  I imagine she'll be on the same big pain meds that she was on last time.  The morphine seemed to work the best.  I'll be taking a week and a half off from teaching and then I'll have the following week off for Thanksgiving break.  I'm hoping we'll be home by then but just in case at least Megan can count on me being off for two and a half weeks.  

Thank you for all of the positive thoughts and vibes mentioned to us in person, electronically, and felt in our hearts.  It makes a huge difference to focus on the good and have gratitude for what we have.  I think that Meara deserves the best Megan and I can deliver in terms of support and love.  It helps us remain strong for her when we have such a loving support system to help lift us up too.

She's been seizing a lot lately.  Just came off of a camping trip where I slept next to her in the camper and Megan and I noticed the seizures have increased a great deal.  She's also had several while awake which is not a common thing for her in the past.  Must be a sign that we are making the right decision to follow through with the surgery.

In the mighty words of the Milk Carton Kids…kinda says what this journey can be like most of the time:  "The road is winding and it's barely lit, you never know how far you're really gonna get.  But when you live here you just learn to get used to it."

So even though the road is barely lit and we don't know exactly what we will get, we will learn to get used to it…no matter what.  We hope, pray, and believe for seizure control.  No matter what happens Meara will be loved beyond measure and we will be there to embrace her and give her strength.  

Peace and love to everyone.  

Aaron & Megan

Sunday, August 4, 2013

Change of Plans: Surgery

We've been sitting on this update for be exact, pretty much right before we learned of my brother's passing. I was going to post about this a whole lot sooner but Megan and I both needed time to process what we are about to share. Working through the loss of my brother was obviously a consideration as well.

So here goes: things have changed since our last post indicating our decision not to have another surgery for Meara. Back when we said no it was in response to the epileptology team saying that she would lose her entire motor strip that is responsible for her left side.  This is referred to as a complete hemispherectomy. 

A couple of weeks after we made the decision, informed her doctors, and updated the blog we received a call from Meara's neurologist with "good news". "Good news" meaning that her case went on to full conference (neurologists, neuro-radiologists, neurosurgeons, neuropsychologist, etc.) and they determined from the spect scans that they would only need to remove part of her frontal lobe with a strong chance of avoiding the motor strip. She would lose supplemental motor in her leg but that would come back - possibly in just a week or perhaps longer. But it would come back. 

So, we had our round table appointments with the neurosurgeon, physical therapists, and neurologists (during the month of July).  These appointments are part of the preparation for an anticipated surgery.  We asked a list of questions and I hastily typed the answers into notepad on my phone. The following is captured from those notes:

Q. What deficits do you anticipate? Transient weakness of foot and leg.
Loss of visual/spatial - reading maps, etc. Can be rewired because bilateral. 

Q. Would you take out out more of the area (equaling greater deficits) once you went in? Would try not to.

Q. How confident are you that this would provide control? 60% chance of seizure control.

Q. Would this resection activate another area? It could. 40% chance that it would not provide control and activate another area.

Q. Are her current seizures a result/consequence of cortical diplasia? Yes

Q. Should we try medical marijuana? We cannot recommend because of the absence of clinical trials. Too risky, not sure of long term side effects.

Q. How long can we wait to make the decision? No rush to make the decision.

Q. How long of a hospital stay? One week anticipated

Q. Therapy in home/out of home/ in school? Depends on outcome of surgery.

Q. Would she need a wheelchair? At first, yes. Supplemental motor area will affect both legs. It is transient loss meaning the motor function will come back.  Weakness will be temporary. Sometimes a week to get back, sometimes longer.

  • Resection area affects visual/spatial, but bilateral. Will not affect memory - that's temporal.
  • 10% chance that they could inadvertently cause damage to the part of the brain that they are trying to preserve (motor strip for entire left side of body).
  • The tricky part for the neurosurgeon is working around/within the scar tissue from the previous resection.   He wouldn't have to remove as much of the derm this time around.

We also met with the neuropsychologist on July 31 and she did a complete assessment of Meara's development in preparation for an anticipated resective surgery.  She provided us six pages of in-depth, extremely comprehensive notes about her development but in a nutshell here are the major take aways:
  • Her developmental progress is lower than before.  This is a direct consequence of the seizures and the medications that she is on.  Anti-seizure medications are designed to "slow" the brain down and as a result her brain is not being allowed to be as active as say one of her peers.  Essentially it is keeping her from staying on track and keeping up with expected learning benchmarks. The take away is that if the seizures aren't controlled, or even if they are controlled and she has to remain on medication her entire life, that she will have learning challenges in school and that her development will not follow the same track as her peers.  
  • Meara has what is called visual field defect.  We expected this since the area of the brain they resected last August is the area responsible for this function.  Basically, her range of vision is limited on her left side.  So when she looks at a book she won't see some of the left side compared to being able to see all of the right.  She can turn her head to compensate but when it comes to reading she'll need to be trained/reminded to turn her head and start on the left.  It won't come naturally.  Also, she'll have to be taught to be extra aware in P.E. class - for example, when a ball is being thrown towards her, etc.  It could affect her ability to drive (maybe not depending on the severity of her defect) but as of right now she won't be allowed to drive due to uncontrolled seizures.

To say that we've been under some stress is kind of an understatement. If you are to ask if we are handling it depends on the day. Megan is doing a better job than me. She's the one with the quiet strength and the ability to stay even. Thank goodness she's co-piloting this family with me. I'm feeling quite emotional at times but trying to stay grateful. Riding the bike as much as I can to keep the stress as far away from my body as possible. The biggest thing is...we don't want to screw this up. The teacher in me wants Meara to thrive and be successful in school.  The Dad in me is just grateful that she is alive and happy.  The key is trying to determine what course of action will give her the best quality of life from the choices of treatment that we have available to us.

A big change for us is that as of July 1st my school district revised our health insurance plan from co-pays to coinsurance. It is a significant change and we will meet our family out of pocket maximum with this surgery. The out of pocket maximum is a significant amount and it will have a much larger impact compared to the last surgery. This won't affect our decision because we are determined to seek the most effective treatment for Meara in spite of cost. I mention it because separate from the decision of having the surgery it adds another element of stress after the surgery is completed.

Megan and I have decided to go forward with a second resective surgery for Meara.  This was not an easy decision and has taken us almost two months to figure out.  The development information from the neuropsychologist was what tipped us in the direction of surgery.

From surgery we could gain seizure control and Meara could lose very little for it. Or, we could not gain control and she would hopefully still lose little. 

We wil be calling tomorrow to schedule the surgery.  We'll update the blog when we have some definite dates.  

Love to every single one of you. Still trying to stay positive. Generally speaking we are. But also being honest that the level of stress that comes with being a mom or dad in this situation is nothing that we could possibly ever be prepared for. So one day at a time I suppose.  And faith that we are making the right decision for Meara...

Aaron and Megan