Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

False Peaks

on July 27, 2012

A few weeks back, I wrote a post called “Hinds’ Feet” in which I likened this journey toward seizure freedom that we’re on to the one undertaken by the main character in the allegorical novel, “Hind’s Feet in High Places” by Hannah Hurnard. 

As in Hurnard’s book, our journey has been an uphill battle. Like the book’s main character, sorrow and suffering have been our companions along the way.

Mountain climbers have been known to fall victim to a particular phenomenon known as a “false peak”. After a grueling climb, they will see a peak which appears to their eyes to be the pinnacle of the mountain. The climber is thrilled, thinking he has successfully reached the summit, but just then the wind shifts, the clouds roll away and another peak is revealed. This cruel disappointment can be devastating and often leads climbers to giving up just short of achieving their goal.

This week, we reached a false peak on our journey to seizure freedom.

I wrote just a few days ago that our departure from the hospital was “imminent”.

As I was beginning to pack up the room we had called home for weeks, I heard Joss gave a little cry from her crib. I stood at her side and right away, recognized the all too familiar fear in her eyes. As the seizure overtook her, her right hand stiffened and her eyes darted back and forth. I tried to see if I could get her attention by snapping my fingers in front of them but she didn’t respond to the movement.

I didn’t want to tell anyone!

I just wanted desperately to pretend that it was nothing and to take my little girl home!

But I knew she was seizing again.

24 hours of continuous EEG monitoring and many tears later, Dr. Lee confirmed our fears. We thought we’d reached the summit but instead, we’d only reached a false peak. There was yet another pinnacle to surmount.

There are two major types of hemispherectomy procedures: anatomical and functional.

In an anatomical hemispherectomy, the entire hemisphere is removed. In a functional hemispherectomy, only certain parts of the diseased hemisphere are taken out and the corpus callosum (the fiber bundle that connects the two halves of the brain) is severed. Generally speaking, the advantage of an anatomical hemispherectomy is that there is less likelihood of seizure activity returning since the entire hemisphere is removed but it’s a more dangerous procedure that usually results in more blood loss and an increased need for a shunt. The advantage of a functional hemispherectomy is less blood loss and decreased need for a shunt but seizures can return if even the smallest part of “bad brain” is left behind or there is even a small thread of connection left between the two hemispheres. Joss’ doctors wanted to be conservative and go with the safer procedure. (An approach we wholeheartedly agree with! As Dr. B says, “You can always take more out but you can’t put more back in.”) Consequently, she does still have some parts of that nasty left brain in place but what was left was disconnected from the right hemisphere. Unfortunately, somehow, seizure messages are still finding a way to spread from the diseased, disconnected side of her brain to the healthy side.

We could go home now, put her on anti-seizure medications or a special diet for the rest of her life and hope for the best, or we could go for surgery again and take out a larger portion of what remains of the “bad brain”.

Frankly, neither of the options are very appealing.

Certainly, these are difficult decisions that no parent wants to make. Nonetheless, we still feel that it’s a privilege to make them. We are fortunate to have options; to still have hope, to still have our daughter here with us.

A third option would be simply not to decide; to go home, take a break from all of this madness for awhile and decide what to do later. Unfortunately, as Joscelyn’s brain heals, it will develop a type of scar tissue that will make later surgery more difficult. If we’re going to opt for surgery, Dr. Lee’s advice is “the sooner, the better” since Joss’ brain is still healing.

We’ve come so far!

We’re discouraged yes- but to quit now? When the beauty and promise of a seizure free life for our little girl lies just a few more feet up the mountain?

How could we?

Besides, what was formerly unthinkable is getting to be almost as routine for us as it is for the doctors.

This time last month, we were petrified at the thought of our daughter having to undergo one surgery. Now she’s facing the prospect of four surgeries in four weeks!

We’re still frightened of course, but at least we know what to expect, which makes the whole ordeal a little less intimidating.

3 hours before surgery: Blood work to make sure she can handle another surgery.

2 hours before surgery: Transport to the OR floor for pre-surgery prep, brief Q&A with the anesthesiologist and nurses, signing of the consent forms to have more of our daughter’s damaged, still-seizing brain removed, a final kiss goodbye on her forehead (now adorned with a little “x” that tells  the doctor which side to operate on…not that he needs it by now.)

Then, it’s on to the aptly named “waiting room” where they give us a pager that looks remarkably like the one you get at Olive Garden. We pass the time waiting for periodic updates from the OR by busying ourselves with our respective electronic devices. Michael reads the news on his tablet, occasionally commenting on an article or headline and I tap away on my laptop, filling “Team Joss” in on the latest news and responding to all of your lovely, encouraging comments.

I HATE that my daughter has to undergo the physical and emotional trauma of yet another surgery!!

But I also have a great deal of peace.

I don’t believe that the goal we set out to attain when we began this journey: seizure freedom for our daughter without medication, is any more unattainable than is reaching the summit of a mountain. The goal exists. It isn’t wishful thinking on our part or some sort of pipe dream. It’s just a matter of finding a way to get to the top and not being deterred by the storms, harsh conditions and false peaks.

We are encouraged to continue by the success stories of the climbers before us who have reached the top and can testify as to the beauty of the view.

We’re also encouraged by Joscelyn, who despite having had 3 surgeries in as many weeks, inspires all of us with her indomitable will, physical and emotional resiliency, sparkling personality and megawatt smile!

For a life without seizures for our little girl, we will continue to fight!

Doctors have scheduled her next surgery for Tuesday at noon. As always, we welcome your prayers and good wishes!

Onward and upward to the high places!

 

 

 

 

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25 responses to “False Peaks

  1. Cynthia Greenly says:

    Again, another encouraging blog amidst a ton of prayers for you all. We love you and Joss is going to hit that summit. When the Warrior Princess gets there and plants her sword, there will be cheering from the base to the peak of her admirers. Just hang in there and know I agree with your decision wholeheartedly. You did not come this far with her to let the seizures continue. LOVE YOU GUYS!

  2. Mariellen Barr in PA says:

    I am praying for no more seizures. Bueaty is your baby girl. God is with you. He loves you and Joscelyn and wants the best for you.

  3. prayers and much love are flying across the us to you and joss and the whole family. xoxo

  4. Things are not always what they seem. While all of us are busy upholding this process with our prayers and hope and healing energy. Joss is quietly going about the work of teaching us all many, many things. Maybe it all depends on how much and how well be learn. The lessons go deep and wide for each soul involved in this journey with her. May we all be graced with wisdom to pay attention and make the progress we need to make. Blessings, We stand by you and this beautiful little soul!

  5. Tammy says:

    There are no words! Praying.

  6. Daryl says:

    praying

  7. Lea says:

    Please know that the prayers continue for Joss! God will see her through yet another procedure, as he has seen her through the first 3! That and the awesome power of terrific parents! Thank you for taking the time to keep us, the people you have never met, informed on how your precious little girl is doing. I am not one to respond to “strangers”, but after reading Joss’s story in the paper, I find myself waiting for the next update to see how she is. I hope one day to get to meet this remarkable little girl and her wonderful parents!

  8. Diane says:

    (((HUGS))) Will continue to pray.

  9. Norma Ruttan says:

    I find a tightness in my neck while I read about more…more seizures, more surgeries, and more praying. BTW I hadn’t stopped praying anyway. God be with you, Joss and the surgeons.

  10. Andrea says:

    I know where your daughter gets her indomitable spirit and ever-ready smile from … YOU! You are an inspiration, truly a Spirit-filled woman despite all the curves life has thrown at you and your family. I am Praying-Praying-Praying all the time for Joss, and I have faith that God has ordered every step of the journey to health and wholeness — even this latest surgery. Be blessed with peace and rest this weekend. We’ll all be standing there on the sidelines cheering Joss on next Tuesday! ❤

  11. Pam Steiner says:

    How marvelous that God is giving you the daily dose of grace and faith you need for each step of this journey. Had you know several weeks and months ago that it would be this difficult you might have opted out. But God knew exactly how to carry out His plan, and give you peace each moment. I know it isn’t easy…I’ve been in similar circumstances with one of my precious children…but I do know that learning to trust God for each step one step at a time is a beautiful answer to prayer…that poem about the “Footsteps of God” is so true, as you well know now.
    Prayers will continue to go up to the Throne of God. He is answering them, one step at a time. You can trust the One Who gave up His only Son for you. He is carrying you through.

  12. Tammie Vinson says:

    I have been and will continue to pray for you and your beautiful baby. I have no words other then to keep your amazing faith. I pray that God continues to give you peace.

  13. June Silva says:

    I heard the news from Pat and have been praying since. I have been without a computer since the day you received the news and I thought, my problems are so small compared to what you are going through. I think of you all and pray for you all constantly. I always forward these posts as there are so many around the world that have been praying thru friends of mine!! So many love your little girl and your family who you do not know in this life! We are all cheering you on and praying. Your decision is well thought out and I am proud to know you all!
    With Love and Prayers, June

  14. Hi – it’s me – your former neighbor from the PICU – Anneliese and daughter Christina. I am sorry to read this latest update. We know exactly how you feel. Christina had a seizure the day after her functional hemispherectomy. I nearly lost it right there. Knowing that seizures the first few days after brain surgery are not uncommon didn’t make it any easier to see. We stayed another 2 weeks and only saw a couple seizures during sleep. We left the hospital to head to rehab hoping things would calm down. She may never be entirely seizure free and we knew that going in. I sit here each night holding my breath, watching her go to sleep, waiting. Our children truly are fighters and God has placed them in our care as the conduit to their healing and possibility for a better life. We are their strength. They are ours.

    Our prayers and thoughts are with you.
    Anneliese

    • Thank you so much for keeping in touch, Anneliese! I have been thinking of you and Christina and keeping you both in my prayers! I hope that rehab is going well for her. Please keep me posted! Hugs!

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