Our journey with Epilepsy

(Dear reader, this post is written for me.  When I hurt, I write.  When I have more questions than answers, I write.  When I want to remember, I write.  When I want to forget, I write.  When I think, I write.  Once upon a time, all these writings were in a little red bound notebook.  Now, they find their way onto this online space of mine.

It is a lengthy and a gut-wrenchingly personal post.  There are no answers at the end.  There is no outline.  There is no point I am trying to get across.  It is just me, my memories, my heart. 

I know God is working, even and especially now.  Someday, I can read and remember how He was at work.  Someday, there will be a big picture.  For now, it’s just the now.)

This week we hit 8 weeks.  8 weeks since I’ve seen his little body shake uncontrollably.  8 weeks since we embarked on a life-altering diet that gave us hope for his future.  8 weeks since we stood vigil at that hospital bed, night and day, willing the health of our little guy.

They call it Epilepsy.  I call it the enemy.  An enemy our entire family battles daily.

It has been 8 weeks since it reared its ugly head last, but it started 5 months ago.

Saturday, October 8, 2016, 4:00 pm.

My body is sore having scraped our portico floor with a knife all morning.  On a whim I ripped off the linoleum in an effort to expose the oak floor underneath.  The linoleum is gone and in its place I discover a mass of thick, black floor glue spread right on top of that beautiful floor.  In vain, I sand.  Getting a knife I start scraping away.  4 hours later on that 4 by 4 section of floor, and the wood is beginning to show.

I need a 15 minute break before I get dinner.  The kids lounge across from me watching a movie.  They have been passing around a low fever the last few days and they need a break too.

I laugh at the movie and turn to enjoy the moment with my children.

He lays on the couch with his back arched and shakes his hands around.

What are you doing, silly boy?

I call his name.

No answer.

Again, I call his name.

No answer.

I know.

I scream for Husband as I run to my little boy’s side.  Husband runs in from the other room.  The other children hear my voice as they have never heard it before and cry.

We pray.  We beg.  We plead.

We tell his 9 year old brother to call 911.

Finally, his little body stops shaking.

We call his name…. and then again… again…again.  He lays, eyes closed, grey skinned, helpless.

Minutes later the EMTs arrive.  Stepping over the wood floor with the linoleum torn clear off exposing the rough edges of life underneath.

Ten minutes later.  He lays there…still.

They wheel him to the ambulance and I watch, helpless, as they take my boy away.

He comes home that night, his normal, sweet self…a bit tired.  A seizure brought on by fever and a virus, they said.  This is semi-common in little ones, they said.  Make sure we give him fever reducers whenever he gets sick.

We return to life as normal and I feel silly for over-reacting.

Friday, November 25, 2016, 2 am

Husband and I sleep downstairs, the children snuggle in my childhood bed upstairs, our bellies full from Thanksgiving feasting with my parents two days before.  The cough I have keeps me from sleeping and I eventually wonder out to the couch.  I finally fall asleep, but soon hear my son yelling.  I can’t tell what he says, but I fear he is going to wake the entire house, so I sprint up the stairs.

I meet Husband on the stairs just as I make out words.

Seizure.

I start skipping steps.

The light is on in the room and my mother is already by the bedside calling his name into his ashen face.

No answer.

It lasts just seconds more.  Later we question what we saw.  All so groggy eyed, we can’t say for sure.

I grab up my little one and take him downstairs, telling his brother to go to sleep and not to worry.

I wrap him in a blanket and set him on the table.  We discuss over his limp body what we should do.  I move to the couch and cradle my five year old babe.

We decide to call our clinic back home and tell them to set up an appointment for the coming week.

“I wish he had a fever,” I say.  Then I would know why.

How long has this been going on?  At home he sleeps alone in his bed.  How long?

Nothing to do, we try our best to go back to bed and then drive back home the next morning.

As we pull away, my daddy sticks his hand in the car and holds my hand.

“God is with you.  It will be okay.”

We wait with apprehension for the end of the weekend.

A seizure Sunday morning.

Another in the middle of the night.

Monday, we meet our family doctor.  He puts us back in the car and sends us to the next town over for an immediate EEG.

I lay on the bed with my boy as they hook up 24 wires to his beautiful red curls.  We sit and stare at lights and breathe hard when she says to and they read his little brain.  The technician says she can tell me nothing, only the doctor can give me the results, but I read through her voice.

They say we need an MRI too.  The soonest they can do it is 3 weeks away.  The nurse says not acceptable and pushes back until they relent and squeeze in our boy on Wednesday.

Why do they push so hard?  What do they think they will find?

We are to start on medication (Depakote) immediately and meet with an Epileptologist in the middle of December.  Before now, I don’t even know there is such a word.

Wednesday comes.  Husband takes Christian to his MRI.  Several hours later, the phone rings.  I don’t get to it in time.  I hear the machine pick up and I hear his little voice on the phone.

I breathe…just a little bit.

5 minutes later the phone rings again.  It’s our family doctor.  MRI is clear.  This is good news.  I breathe deep.  Only later will they tell me his EEG gave strong indication to believe there was a tumor.

We praise God for the news.  We think and pray for those who don’t get the same results.  Christian throws up when he comes home – sick from the anesthesia.

No answers.  More seizures.  They come daily now.  Mostly at night.  I start to sleep with my sweet boy, though I hardly sleep.  I’m tuned to every sound, every movement.

The seizures are smaller now.  Mostly just his head moves.  Some days are seizure free.

We meet with the Epileptologist.  We talk for a long time, but I don’t know that I have more answers when I leave his office.

A week later he drops his plate twice and nearly falls on his way to the sink after breakfast.  After staring off in space, he draws a picture and writes his name upside down…perfectly.

I call the doctor to let him know.  They say to switch his medication.  We slowly wean him off the Depakote and start him on Keppra.

The medications change our boy.  He is irritable, aggressive, lethargic, shaky, uncoordinated.  We drop our kindergarten plans for now.

We stay home for Christmas and I try hard to make it special.  We get a Christmas present – seizure free on December 20th and then 21 beautiful days without any episodes.  We think maybe we’ve made it.

2017 can only be better.

Tuesday, January 10, 2017, 4 pm.

Christian is still not himself.  I now know hyperactivity.  They say the seizures make his brain go a little crazy. My parenting skills seem stretched.

I hit send on an email and begin closing the laptop for the day.  Christian comes in the room, his back to me.  He hollers, throws his hands in the air.

I remind him to not be too loud or he’ll wake Michael.  Then he throws himself down on the floor.  What will I do with this boy?

His body shakes and calling his name I run to him and roll him to his side.  Blood pours from his lip.  Body stiff, white eyes stare at me from his little face.

I yell to Lowell, “Get a towel.  Get a phone.  Fast!”

I call Husband as I press the towel to his bleeding lip.

“Come home,” I say.

Several minutes later, the seizure stops.  Husband arrives.  We call the clinic, yes, the cut is deep enough he needs stitches.  We just miss office hours and Husband takes him to the ER.

7 pm, I’m upstairs with little ones when I hear the door.  They are home.  I hear my name.  I run downstairs.

Christian is on the mudroom floor, coat on, shaking.  After a minute, it stops.  We take him to the couch.

He responds a little.  We talk.  10 minutes after the first, he begins shaking again.

10 minutes later another.

He quits waking up between the seizures.

It’s nearly 8 pm, everyone piles in the car.  I sit beside Husband in the front holding Christian on my lap.

I watch the clock as we drive.

10 minutes later.  His body shakes against me again.

8 minutes later.  I hold him and pray as he shakes again.

It is hard to tell when they start and stop.  Husband drives faster.

We pull in the ER.  Husband rushes to my door, grabs Christian and runs in.

I sit, agonizing in the parking lot with the children, calling friends asking for prayers.

An hour later, Husband tells me things are more under control, I can go home with the other children.  It’s hard to drive away without my boy.  Every ounce of me wants to stay with him.

I get the children to bed and get another call.  He had an allergic reaction to the rescue medication and quit breathing for a while.  They are sending him to the children’s hospital 30 minutes away.  I call Mother and ask her to come tomorrow.  I figure they will come home then and I may need her help.

I get a call at 2 am.  They’ve arrived at the PICU of the new hospital.

Wednesday, January 11, 2017

He’s having seizures every hour.  Mother arrives and I go to join Husband and see my boy.  Our five year old boy sits in a pull up, naked, with wires and wrappings enveloping his head.  His lip puffs around the stitches from his fall yesterday.

He tells me he hates me.  Every 15 minutes he tells me to get out of the room.  He gets mad and tries to bite.  He can’t stand on his own.  His words are slurred and slow.

We go over his history with the doctor.  Normal pregnancy, normal birth, normal development, normal everything…till now.

They tell us his anti-convulsant medication blood levels are untherapeutic.  They can’t give him too much too fast, but they start him back on the Depakote and up the Keppra.

I go home for the night.

He’ll be home tomorrow, I think.

Thursday, January 12, 2017

Next day I’m back again.  I bring food to Husband and Father-in-Law.

I’m grateful for Husband’s accommodating employer.  I’m grateful for our rock solid family.  We are blessed.

I want to stay, but my other children need me too.  I’m torn.  Husband stays the night again.

He doesn’t say he hates me today.

The seizures continue.

Friday, January 13, 2017

I plan to stay home today.  Michael is due for his 18 month check up.  I’d cancel, but he’s been sick and I want to make sure he doesn’t have another one of his ear infections.  Doctor says he does.

On the way home from the pharmacy, Husband calls.  The doctor says they can do no more for Christian at the children’s hospital.  They are arranging with our insurance to fly him 4 hours to an out-of-state hospital.  The airlift time is rescheduled and rescheduled again.

Finally, around 8:30 pm, the jet arrives.  They take him by ambulance to the airport and Husband goes on the jet with him.

Jeanie, the airlift nurse goes over protocol with her team.

“Are there any questions?” she asks them.

“Yes, I have one.  Could a tiger kill a lion?”

This.  This sounds more like the sweet, lovable little 5 year old year old boy.

I pack a bag full of a few days worth of clothes.  Father in Law picks it up on his way to meet them at the new hospital.

Saturday, January 14th, 2017

I make plans with Mother.  The children will go back to the farm with her.  I plan on driving to the hospital directly and staying for a day, then leaving before an ice storm hits.   I’ll go back and forth between the hospital and the farm for as long as necessary.  Surely, it won’t be for long.

I get to the PICU room as the neurologists are making their rounds.  There are at least 5 doctors in the room at once.  They are warm and answer all our questions.

He is so heavily sedated he could lose consciousness and would need a breathing tube – still no food.  He hasn’t eaten a real meal since Tuesday.

They start him on a drip of medication to stop the seizures.

His head is covered in wires and the video camera records his every move.

He calls his flight nurse, Nell, in the room and proposes.  She politely declines but says she does have a thing for redheads.

Family visits.  People call.  They cry.  I don’t.  I realize its been easy because others are carrying the weight for me.

The next days are a jumble of long drives, long nights, reattaching wires, long talks, and prayers.

Finally, the seizures stop.

He gets a spinal tap and another MRI.  They may have missed something.  It’s clear again, praise God!

They suggest he may have Doose Syndrome, a childhood epilepsy present mostly in boys his age that is brought on by a febrile seizure.  It is normally resistant to medications.

They take him off the drip medication and say the next 24 hours are critical.

He starts having seizures again, but only during the trough of his medications, morning and nights.

They add one more medication, and the seizures stop for good (Tuesday, January 17th).

We are moved to a regular room.

They suggest we start the Ketogenic diet.

He can eat now, but his meals are served with tablespoons of butter and mayonnaise along with a cup of cream.

Thursday, I get him out of bed for the first time in 9 days.  He can barely walk.  I hold his hand and wrap my arm around him, and he still flops all over the hallway.  It is easier to be here with him.

Friday, January 20th

We get the word we can go home.  Nothing has ever sounded so good and so frightening at the same time.

We are given a list of 10 meals he can eat when we get home.  I’ll need to add cream and specific brands of products to my once so simple shopping list.

I have a gram scale at home I can use as I measure out his meals.

We get a helmet to protect him.

Saturday, January 21st

Mother and Father drive the other children from the farm to our home 3 hours away.  Husband drives to the hospital and after a long dismissal we drive away.

His brothers, sister, and grandparents see him stumble into the house with his helmet.

 

A month goes by.

I weigh every meal and snack and spend hours in the kitchen every day making and weighing his meals and coaxing him to eat.  He is bored with the meals and sick of the cream, but he must eat every bite within 30 minutes.  His 6th birthday comes and there is no cake.

I crush and deliver 18 pills into his sweet mouth every blessed day.

He still is aggressive, cantankerous, clumsy.  His voice is slurred and the words I speak to him fly right over his head, but he is seizure free.

We have a check-up at one month (February 13th).

The EEG shows his brain waves are slower than most children his age.  It could just be the medications, or it could be damage.  But there are no epileptic discharges.  This is good news.

We tell the doctor and dietician that he has been seizure free.  The dietician almost cries and says we could be their 2017 success story.  I’m encouraged by their optimism, but I can’t help but be apprehensive.

They give me permission to start creating ketogenic meals on my own and we up his diet ratio to 3.25:1 to make sure his ketone levels are at a good level.

They give us permission to start cutting back on his Clonapin.

One week down, no seizures.  We start to see him wake a little out of the fog of medication.

It’s another week, we cut down a little more….we shall see what today, tomorrow, and the next day brings.  One step, one day, one moment at a time…

 

We are still very much in the midst of this journey.  We have gone 8 weeks seizure free.  This is huge, but I can’t help but be apprehensive at what is in store for the future of our sweet boy and our family.  Someday, I hope I can write an ending to this story, to close this chapter of our life.  I pray that it will be a happy ending, but, regardless of the ending in this life, there is always a glorious ending with the Lord.  Yes, He is with us and directing our every step.

I’m grateful that red headed boy is mine.  I’m glad we get to walk this road with him.  The Lord is working.  He is working in the hearts of our entire family.

May He use it all for His glory.

Amen and Amen.