The World Turns...

We are sorry for the lack of updates.  Honestly, it's been a miracle that we've gotten through the week.

And, yes, it has been almost a week since our last post.

The subdural drain fell out…let's see, can't remember which day...someday this week. They stitched her up and the fluid built back up.  But not as tight as before.  It's still squishy which is a good thing.  She is still having a bit of a temperature when she is coming off the tylenol and motrin (sp?).  They still have no clue as to why she has a temperature.  Baffled.

Anyhoo, I went back to teaching on Monday.  Amazing to be back connecting with students and seeing the staff.  A sense of normalcy and a huge source of strength.  Megan has been in the hospital with Meara for let's see…9 days now.  She is so strong.  She is the strongest woman I know.  And not a day goes by that I haven't reminded myself just how lucky I am that she chose me.  How lucky I am that I have her...navigating this treacherous journey.

I took today off because we thought we were bringing Meara home.  But alas, her temperature wouldn't let us.  So, after consulting with neurosurgery we are scheduled to go home tomorrow.  We'll see if it happens.  If it does we'll celebrate…but no sooner.

The plan at home: two weeks of IV antibiotics. Check her temp twice a day.  If her temp hits 103 we are back to the hospital.  If Meara's body doesn't reabsorb the fluid in her head after two weeks then we will readmit her for a shunt (another surgery).  So this is what we wish for:  antibiotics to clear up this imaginary "non existent" infection so it will bring down the mystery temperature and also help the fluid in her head dissipate.  So that we can celebrate Christmas at home as a family and not back in the hospital.

Today was the lowest point.  But tomorrow is another day…another opportunity to turn this all around.

I am so thankful for friends.  Thankful for Melissa, Jan, Olga, James, Suzanne, Lisa, Barbara, Shelley, Kathryn, Anna, Holli, Dana, Brittany…and all of the staff that have reached out supporting us with love, hope, and meals. I've leaned on so many people this week at work.  I am sure I've forgotten to mention more of you here.  I am so thankful for all of you.  Thankful also for my Mom who has been such trooper taking care of Ainsley while I go to work and the hospital.  She has been here almost a month now.  Thank you Mom for being there for us.

Ainsley has been greeting me at the door at night when I get home from the hospital.  She runs into my arms.  She bear hugs me with her tiny frame and strong hands.  It's almost as if she were built for this journey as well.  She's wearing through the same gears.  I love her so much.  One day she'll look up to her big sister and remember through all stories how we journeyed through this together…all of us.  We made it.  Wow, what a year.  

Walking outside in -3 degrees wearing boots made for rough asphalt in ice, snow, wet…whatever the elements could possibly throw our way.  In the background, you think…is this a metaphor?  Are we in training? Am I driven to persuade myself that it couldn't possibly get any tougher and that if I can make it through this that I'll finally be able to say I've made it.  But then again…is there ever dry land?  I don't think so.  I think that life is full of challenges and struggle.  And sometimes you are on the front lines…and you get bloodied and you realize you just have to fight for it.  Fight for it.  Keep on going and never give up.  No matter how tired you are or how bad it hurts.  Maybe you win the battle, maybe you lose one.  But there is a overarching purpose that demands determination and resolve.  

We've still got some fight…

Let's see if we can get our family under the same roof.  Let's see if we can rest our eyes and warm our feet together…

I want this.  I need this.  I will fight for this.  

As always…all of our love and gratitude…knowing that we wouldn't be this far without the help, love, support, and strength of so many of you,

Aaron & Megan

Still in the Hospital...

It's pitch dark in Colorado and I'm driving back to the hospital after dropping my Mom and Ainsley off at home.  It's a quiet yet tricky drive through highway construction zones and fighting for space in tight lanes amongst nervous drivers.  Somehow in this 45 minute dance in the dark I paid attention to the lyrics of the Milk Carton Kids…surrendering their souls to strangers like me:

"This don't feel like home anymore

nothing's familiar when I walk through my door

So I thank the heavens or who's ever in charge

This don't feel like home anymore

I don't feel the pain I once did

One day just finished like a milk carton kid

Are your rooftops set free in a hurricane wind

I don't feel the pain I once did..."

And it got me thinking about why it is that life can be so demanding and unrelenting.  Thinking, what in the heck did we do to invite this kind of immense exhaustion into our life?  And then in small moments, and I mean very small, fleeting moments you start to hear the whispers of why.  

Because there is a higher calling, a higher level of consciousness that demands depth and journey.  Otherwise we'd get caught up in the same useless and ridiculous race that so many of the people around us are living.  

It all helps me realize that it doesn't feel like home anymore.  The past five years have been change.  Nothing is familiar to what was before this journey that our brave daughter has taken all of us on.  So you know what?  You can take my roof in a hurricane wind.  It's not the same place…and I'm thankful for it.

This is all a work in progress.  And I'm glad that we aren't falling for the sad fate of getting sucked into the idea of "first world problems."  At some point in your frustration and process of reconciling what has happened to your first born daughter over her short yet very long five years you start to realize that you are living in a different realm.  It is frightening and exhausting and lonely at times…well, perhaps most of the time.  But we are also drifting in a space ripe with so much meaning and honesty that it would be foolish to think that it wouldn't be frightening, exhausting, and lonely.

The lights were off in the car on the way to the hospital.  The lights are off in Meara's hospital room.  Megan is sleeping on the fold out couch thingy.  I'm sitting/laying here next to Meara in her hospital bed.  She's sleeping remarkably after I somehow just got her to swallow Tylenol and zantac while half asleep.  She's hooked up to a drain and IV meds.  The lights are off…and it's quiet.  It's like talking sweet to a dream…wondering when we might arrive back home as a family…searching for when the lights are turned back on again.

Aside from the mess of thinking that I've unloaded just now, let's discuss straight up details…Meara's cultures turned up negative for infection, she is still fighting a fever, and she is still draining spinal brain fluid from her head.  She isn't going home until they figure out what is going on…and they have no idea what is going on.  I mean that in a non-sarcastic way.  They truly are baffled at the circumstances.  But they are also very concerned and sincere medical staff so you can't blame them.

Peace, love, and gratitude,

Mostly Aaron (not at all proof read by Megan because she is asleep on the pull out couch thingy)

Thanksgiving at the Hospital

Hi All,

Last night around 8:00pm we checked Meara into the ER at Childrens Hospital.  She had a fever of 105 and her head was filled back up with fluid and causing her extreme pain.  We spent the night in the ER while the doctors tried to figure out what to do.  They admitted Meara to the hospital around 10ish this morning and we are back up on the 6th floor.  She has a subdural drain that is continuously taking the fluid out of her head.  She is also on IV antibiotics.  They suspect an infection in the fluid but it will take 48 hrs for the culture to tell anything and in the mean time they have her on the antibiotics just in case.  If the culture comes back positive for infection it means Meara will be here for a indefinite amount of time until the infection is cleared up and she doesn't require the IV meds anymore.  If it comes back negative and the fluid build up in her brain can be figured out then I suspect we could talk about going home again.  At this point, it is wait and see.

So Thanksgiving at the hospital.  It is really quiet here today.  

We'll update more as we know more…thankful for generous people who without their help we wouldn't be able to face the continuing expense of this roller coaster of medical visits, stays, consultations, treatments, etc.  Thankful for my Mom who has stayed here in CO to help take care of Ainsley throughout all of this.  Also thankful for amazing medical staff who love our daughter and just want her well.  Very thankful for those who have reached out with words of encouragement, positive light, and loving prayers.

Love to all!

Peace, love, and gratitude,

Aaron & Megan

Roller Coaster

Dear All,

It has been quite a bit of a roller coaster since we arrived home from the hospital.  Last Tuesday, a couple of days after we arrived home, we took Meara back to Childrens for a MRI and neurosurgery visit.  She had been throwing up, not eating, and was very lethargic.  The MRI showed fluid build up between her scalp and skull but not inside the brain itself.  The nurse practitioner prescribed more steroid and within 12 hours Meara was back to eating and being active again.  

Meanwhile, the seizure activity remained, in fact, sort of ramping up a bit compared to what it was earlier in the week.  Meara is still sleeping with us because we are still trying to keep track of the frequency and duration.  

Towards the end of the week she started to get more lethargic again and complaining that her head hurt.  We had a neurosurgery check up on Monday of this week for a wound check.  She checked out fine and everything seemed okay. As soon as we got home from the hospital though Meara complained that her head hurt and throughout the night she was throwing up and complaining of the pain. She developed a high fever overnight and this morning Megan called neurosurgery. They were able to get us back in for another MRI and check up in the clinic.  The MRI showed a massive amount of fluid build up in between her scalp and skull (more than last week's MRI).  This time the nurse practitioner took a syringe and inserted it above her ear but below the incision (from surgery).  She was able to drain 190ml of fluid (that is a little over 6oz.).  Immediately Meara felt better and by the time we got downstairs and finished in the lab (taking blood for tests) she was eating chicken tenders and french fries in the hospital cafeteria.  

About five minutes before we got home the nurse practitioner called to tell us that the initial tests came back from the fluid they took from her head. According to two of the infection markers she was in the clear - no infection.  That is awesome.  Her white cell count was up a bit but that could be from the steroids or possibly a UTI which we are headed to the primary care doctor tomorrow to check out. 

And…we think…she has gone two days without seizures.  We can't be sure.  Maybe we are sleeping through them.  Maybe she isn't having them.  Megan and I have not witnessed any the past two nights.  We aren't calling it control.  We are just taking it one day/night at a time.  Finding peace in small success and walls overcome.

There are many times a day that I recite this mantra to myself: give me strength and give me hope.  Give me a channel to navigate this family through.  May it be treacherous or an easy lazy glide through the peaceful sky filled with shining stars.  Whichever it may be…difficult or easy, light or dark…one thing is for sure.  We get through it.  As I stood across from my wife this afternoon, Meara in the middle on the examining table, the nurse taking fluid from our daughter's head…I realized we weren't worried.  We had complete trust in our medical team.  We were calm and reassuring Meara.  She was brave and hung in there like a champ. 

Life is one big complete gamble.  That is all it is.  At times we might have more figured out than not and we can say that we engineered our life a certain way…I argue that life is a series of decisions.  These decisions lead to outcomes.  Sometimes we know for sure what these outcomes will be.  Most of the time, if we are really honest, it is a gamble.  What we can really do though is trust.  Trust that after all is said and done that everything will be okay no matter the decision made or the outcome because of it.

That is where I will leave this update for now…that everything will be okay.  Because whether the sea is treacherous or we are sailing calm waters…we know that our journey will provide passage to somewhere new and somewhere that is rife with meaning.  Wherever that might be…

Peace, love, and all of our gratitude (in massive quantity!),

Aaron & Megan

A Week at Home...

Wish we could say that the goal of the surgery was achieved (complete seizure control) but alas it seems that we aren't done figuring this out. The good...that Meara is herself and she is active.

Who knows what this all means in terms of moving forward. Megan and I are figuring out that the brain really is the last frontier in medicine (at least it seems). There is so much uncertainty and wonder involved. 

We still hope that miraculously Meara will wake up one day and never have a seizure again. Nothing wrong with hope. For now, we are focused on the fact that she came out of surgery with such small deficits and that she will be able to go back to school after Thanksgiving break.

We have a follow up appointment with our neurologist on December 23rd to discuss where we go from here.

We want to again, thank every one of you that offered your words of encouragement, your prayers and positive light, and the generous financial help that was given to us to help eliminate our medical expenses.  It is easy to feel discouraged about what we didn't get out of the surgery but it is a huge source of strength having your help and embrace on this journey.

Meara has a follow up with neurosurgery tomorrow morning for a head wound check.  Meara also still has quite a bit of fluid between her scalp and skull that should (hopefully) go away on its own soon.

Peace and love to everyone.  Have a wonderful Thanksgiving.  We are thankful for every single one of you. Thank you for loving us.

All our gratitude,

Aaron & Megan

Another MRI...

Space, time, warmth. A breath of light in the morning. Always wondering what's at our back. Sending back anything less than a morsel of hope and determination that this path was the right one.

We took Meara back to the hospital today for a MRI and consult with neurosurgery. She's been throwing up ever since we got home on Sunday and has been really lethargic. She's lost about 5 pounds since surgery a week ago. The MRI showed fluid along the right side of her head but nothing out of the ordinary with her brain (like infection or bleeding).

The neurosurgeon said the MRI looks fine and prescribed steroids to ease the swelling from the fluid. Hopefully this will ease her pain, help her head and tummy feel better so she can eat and get some energy back.

She is still having seizures. Not giving up hope. Not giving up. Sweetie, it's alright. It's alright.

Along this ridged and ragged road where decisions are made and avenues brought into the wide open light it's among the debris that meaning can be made. It's a precious thing to be dragged across a path of uncertainty and dangerous wonders. Because although I believe Meara is going to live a happy and fulfilled life it is within this journey that we have literally no control over the outcomes of these medical treatments and intervention. No matter how hard we try, how much we throw ourselves in earnest and resolve...we are only but clasped hands begging for some meaning in all of this. I think we've found the meaning...

I think we've found the meaning.

Going Home...

Dear All,

Yup, we are going home. We are cleared with all of the doctors and we are packing our bags.  We are excited to get home and start getting back to a normal routine.  Meara's incision will take time to heal but it isn't anything we need to be in the hospital for.  She is now off of the heavy meds so we can give the over the counter stuff at home.  Meara is still having seizures but we'll wait and see what happens.  Megan and I refuse to give up hope that we will get seizure control.

As we leave the hospital after a second brain surgery (third, technically) we are parting ways with medical staff that are out for the same result that we are:  a thriving, happy Meara who has a great quality of life.  And some things that Megan and I have learned along the way...

To be vulnerable is a scary and rewarding thing. Like the warm sun on your neck when you didn't realize just how cold you felt. This journey is bit like that...taking the time and risk of being honest and vulnerable. Allowing that "warm sun" to comfort and ease the burden.

Epilepsy, like any disorder, disease, medical condition...especially concerning your own child is tricky...and frustrating on so many levels. Not having a definite cure. Not having a treatment that provides 100% chance at the outcome you'd like. You second guess yourselves as parents so many times.

And then you restore yourself to the faith that it will work out. That Meara, your child, will live happy and fulfilled...independently of outcomes and roads taken. You believe, without reserve, that your child is the ultimate gift in a world filled with so much uncertainty. You get up and charge forward with unlimited love and embrace...never allowing yourself to miss the opportunity for living this life in the moment knowing it's not how long or how much you get out of this life. It's about what you do while you are in it. It's how you love and are present in every moment.

This is what it is...a journey. No destination in sight...that's okay.

Perhaps another update when we are home and settled...along with some more pictures of Meara post surgery to show you how well she's doing.

Love, peace, and gratitude,

Aaron & Megan