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

Monday, February 10, 2014

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

Friday, February 7, 2014

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

Sunday, February 2, 2014

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