Admitted to Hospital

Meara was admitted to children's hospital this afternoon. She might have had some leakage from her head and so they wanted to put in a subdural drain (this will be her third one) to drain the CSF and collect it for a culture. If by Thursday there is no evidence of infection they will go ahead and perform the shunt surgery on Friday. If there is a infection they cannot put the shunt in, instead they would perform a surgery to install a more permanent drain into her brain and put her on IV antibiotics. They didn't give a timeline for that scenario. We're obviously rooting for the shunt surgery on Friday.

Megan is in the hospital with Meara all week. I'm at work and home. I'm running really low on days off so trying to conserve. Ainsley isn't allowed to be at the hospital because of flu season restrictions (no visitors under age 13) so finding childcare during the day and then me and Ainsley in the evenings. Thanks to James, Bethany, Beth, and Chris for covering our Tuesday and Wednesday. Can't tell you how much this means.

Sorry so short. Going to be in the thick of it so not sure about timely updates but will update as we know anything important.

Love to all,

Aaron & Megan

Change of Plans

Meara started developing symptoms of a cold yesterday afternoon and when she woke up this morning the symptoms were worse.  As a result the surgery has been postponed until she is free of the cold.  

The pressure in her head is intense at the moment and she's in a good deal of pain.  We asked if they would drain the fluid temporarily (with syringes) like we did once before but understandably the neuro staff doesn't want to risk infection, especially with her cold.

The plan is to wait it out.  If she's in enough pain to be throwing up like she did in November then we'll have to admit her to the ER at Children's and determine a new plan.  Otherwise we wait  and check back with the surgery scheduler on Monday to see if it's possible to schedule the next earliest surgery date.

Thanks everyone for the encouragement and positive vibes being sent our way.  Meara is in pain but she's also safe and Megan and I have our wits about us.  Everything is okay and it will work out soon.  Meara just has to hang in there a little longer.  She'll get through this like she always has.

Thank you so much for your love and strength.  We are doing well because of it.  More updates as we know more.

All our love,

Aaron & Megan

Embracing it All

The fluid in Meara's head has gotten bigger and therefore tighter.  Megan took Meara down to Childrens this afternoon for a fast MRI and consult with neurosurgery.  The surgeon decided she needs a shunt due to the fluid building back up and the fact that it still hasn't dissipated since her November surgery. Meara will be admitted to the hospital on Friday at 10:00am and the surgery will be at 1:00pm.  The surgery will last two hours and she'll be in the hospital for twenty-four hours so she can receive her four doses of required IV antibiotics.  She will have the shunt for the rest of her life.  The valve is installed between her scalp and the bone flap.  The catheter will be inserted through the bone flap and dropped down through Meara's brain, down (inside) the neck and end at her peritoneal cavity.  The catheter will extend as Meara grows, meaning there is enough catheter rolled up to adapt to her changing body.

And some thoughts that I captured last night...after putting the girls to bed...

Meara is full of beauty.  She sits with a heart full of imagination and innocence.  When she curls up to you and you feel the wonder…the curiosity and light that she brings.  It is as if we inherit something unique and special by enveloping her soul.  It provides shelter…and warmth.

It also ironically hurts.  Thinking about what she has been through.  Thinking about the challenges she has had to face.  Thinking of the brain surgeries and the times we've had to leave her in the operating room on the surgical bed kissing her right after she's been put to sleep.  Knowing that as we sit in the waiting room that we've just made such a insanely difficult decision to put her there…

And there it is…the incredible forest that is expected to be navigated.  Because we have to find our way out.  She still has her entire life ahead of her  She's so beautiful.  And so far, her life has been filled with so much vulnerability and depth…such complexity.

At some point I bet I should actually talk with someone who can help me sort all of these feelings and hopefully move a few steps forward.  Time…where is the time.

Making these difficult decisions hasn't made us stronger.  It's empty to think so and you cannot offer us evidence to convince me of it.  It has made us more aware…perhaps more conscious and present.  It has made us see the life that still awaits us moment to moment knee deep in…intense meaning.  And it doesn't make us stronger…just more aware.

It's alright…but it also intensifies the love so much that it hurts.  That when you hold your daughter's hand as she falls asleep you can't help but think of her journey through hope.  It's so intense and it really just makes you want to embrace her and never let go.  Ever.

All our love,

Aaron & Megan

  

Moving Along...

Hi All,

Meara had a PET scan on Tuesday morning.  She had an IV put in while awake and then was given the radioactive tracer.  The test took about 45 minutes and after she woke up from the anaesthesia we went to the cafeteria to eat some french fries and chocolate milk.

Megan and Ainsley arrived at the hospital in the afternoon and we met with Meara's neurosurgeon. He looked at the images from the petscan and said that since her fluid is squishy and she isn't in pain that he wants to wait on the shunt.  Right now she fluctuates between normal and 101 but Infectious Diseases doesn't seem concerned about it at this point.  She's acting normal around the clock and it doesn't seem to be affecting her activity level or comfort. 

So we meet with the neurosurgeon in three months and wait and see in the mean time.  Meara is cleared for P.E. and recess at school (the incision on her head healed up really nice).

We are just plugging along...we have a overnight hospital stay in March for a 24 hr EEG to find out if Meara is having seizures.  Wish for the best.

Love to all...

Aaron & Megan   

Meara's Brave Journey...and the ramblings of her Dad

I've reached a point in my "reflecting" where I've realized the blurry line I've created within Meara's Brave Journey, the blog.

There have been quite a few entries that have little to do with Meara's treatment (if any at all) and are more of just the rumblings that I've been motivated to unleash upon the electronic frontier.

So, I think it might be appropriate for me to have a alternative space to capture my more spiritual, reflective, moments of angst and redemption type of stuff so that way Meara's Brave Journey is just that - Meara's actual brave journey.

Here is a link to a blog that I'll update from time to time with random thinking.  It will most likely just be between me and myself, and that it perfectly okay and appropriate.  I'll think of it as a conversation with my inner self…if anything other than to release my deepest thoughts into electronic superspace so I can then move on about the daily routine.  Or, perhaps I can connect with some of you out there and engage in some dialogue related to keeping serenity and hope at the forefront of our existence.

http://existingandbeauty.blogspot.com

Meara has a petscan tomorrow morning and then we meet with the surgeon at 1:00.  We are hoping he'll have a plan regarding the fluid in Meara's head.  Shunt or otherwise.  She is thriving at home and at school and is surrounded by love.  I'll update Meara's Brave Journey tomorrow evening when we know more…

Our love and heaping mounds of peace,

Aaron

Time and the thick of it all...

I'm not so sure that time helps with loss.  

It could be that there are just periods of abandonment of the total revelation of the loss.  Like an ebb and flow type of thing.  As if traveling a river thinking "okay, this isn't so bad" and from time to time you come upon a waterfall and you think to yourself…crap.  

I believe this is how the grieving process goes.  But then I'm not so sure it is a process.  Maybe just a prickly road that you have to travel barefoot.  Trying not to step on anything that will hurt too much.  But it's impossible to avoid the really painful stuff all of the time.

I have no coping mechanisms really. I mean, you could say I drown myself in distraction…and that would be true.  

As I put Meara and Ainsley to bed tonight they insisted on sleeping together in the same bunk for the second night in a row.  They also insist that I stay with them until they fall asleep.  

My brother came to live with us when I was eight years old.  When we moved to Bradenton Ben was old enough for us to have bunk beds in the same room.  And I remember after Mom and Dad would turn off the lights he would come crawling into my bed.  And if he didn't…I'd call out and ask if he wanted to snuggle.  We were "best buds".

I hope Meara and Ainsley feel the same way about each other.  And I hope that Meara and Ainsley have each other to hold onto long after I'm here.  

Mad World

Tears for Fears…as I'm picking up toys after the girls fall asleep.  I'm on the floor picking up tinker toys and trying to figure out how we accumulated so many of these toys when "Mad World" lands on the playlist…boom.  Time for deep reflection…

"Bright and early for the daily races, going nowhere…"

I think how lucky I am that I get to wake up and be part of a vocation that I need more than it needs me.  No daily race…just striving to be present and have meaningful interactions and moments with my own family and my students.

"Find it kind of funny, I find it kind of sad, that the dreams in which I'm dying are the best I've ever had…"

Is it possible that these difficult journeys we've been on actually add meaningful to our lives that elevate us to a higher sense of purpose and understanding…learning to listen to others…their suffering, their calls for community, connection, and embrace.  Maybe that is why dreams of dying leave such a impression…it helps us realize just how important life is.  

"Children waiting for the day they feel good…"

Children want connection.  They want to be heard.  They want to be able to express their challenges  with reconciling a world filled with so much violence, exclusion, and greed.  They want a better world.  They want to feel good…

"People run in circles, it's a very mad world…"

All the time…the look of resignation on people's faces.  What are you after?  Are you contributing to good in the world…or are you just taking?  If you are running in circles…chances are it's time to start focusing on the giving…the contributing…something other than…"How much can I get out of this?"  Chances are you might stop running in circles…

Just a bunch of random thoughts on…I'm sure Tears for Fears' random thoughts…

Sorry.  This has nothing to do with Meara's treatment.  Petscan on January 21st.  Probably find out whether or not she'll get a shunt after that.  She's doing great.  Back at school and loving it.  

All our love,

Aaron