The Big Bad Seizure

The PICU was home for us Friday night. All that was missing was Brother, who went home with my mom.

Cayman had a really bad seizure early Friday morning. I awoke just before 7 a.m., responding to Kobe's morning nursing need. I glanced at Cayman's video monitor docked on my nightstand, checking in on my other little chick. She was laying on her back appearing awake but not moving. It's unusual for her to sleep on her back.

A red flag.

Her eyes open, body lying still. It's unusual for her to be laying motionless when awake.

Another red flag.

Then a wet cough heard over the monitor. A sound we've heard before when she's vomited.

That was it (!) the final flag.

"Mike," I spoke softly to my husband lying next to me in bed where I was nestled nursing Kobe. He had been gone on a business trip, his arrival home anticipated no earlier than Friday night. But a day early he gave us a surprise appearance Thursday evening. Daddy was back home with us!

{An excited Cayman attacking Daddy with a hug when he came home}

"Mike," I tapped on his shoulder, "Go check on Cayman for me, please."

He went immediately, leaving his warm, soft spot in bed. No questions asked. I love that. If Mama is worried then it's worth checking on, for the reason that both his girls mean so much to him.

In Cayman's room Mike called for me to come, lots of concern in his voice. I went. Kobe cried at the breaking of his Mommy time as I placed him back in his crib, a place where fewest [physical] harm can come to a baby when they can't be watched. Emotionally he screamed in abandonment as his needs went on hold.

Mike lifted Cayman out of her crib. Limp and pale, she had thrown up. Conscious but precious little response seen from her. Mike placed her in my arms while he left to call 911.

Her tummy rumbled like she might throw up again. I carried her to the bathroom, easiest room for containing a mess for clean up. I sat on cold linoleum cradling my girl in arms. I opened linen cabinet and pulled from top a towel from the stack. It was the softest one. I felt grateful to wipe her milky skin clean with the soft towel, providing the best in her moment of discomfort.

"Cayman, look at me." I said to her, seeing if she was able to follow directions. Her eyes moved center toward me, then moved up and left, jerking in that position.

She was seizing.

"The ambulance is on its way." Mike said entering the bathroom. His movements fast and became slowed in Cayman's presence. He knelt beside us on the bathroom floor, stroked her hair, then pulled away to ready himself for going outside. He would go to the hospital with Cayman. I would stay back with Kobe and get things ready for the longer haul to the U of M hospital.

My brother, who has been staying with us, woke up to get ready for work. He took on the job of feeding Kobe a banana for breakfast instead. Kobe was not so accepting though. He wanted only Mommy, so the crying continued after a half eaten banana.

Coddled in my arms still sitting on bathroom floor, I whispered sweet things in Cayman's ear like - Mommy is right here. - You're so brave. - Hang in there, it's almost over.

Thank God I didn't know how much longer it actually would be til the seizures ceased! Panic would have raised through the roof.

Looking out window into the dark, the sun's tip starting to peek over the horizon, Mike stepped into the ambulance with Cayman. That was my cue to get moving. I made phone calls, heart pounding through the house, rushing, cramming the mind to think of every possible need and stuff it all into bags.

Load the van. Strap Kobe in. Away the two of us went to the local hospital.

Cayman was still seizing when I arrived. It had been an hour since Mike pulled her out of bed. The seizures were not stopping under the medication given at the hospital. With an oxygen mask over her face the O2 stats still hung in the 80's. Ann Arbor was getting bad weather so the helicopter was not flying. The nearest Mobile Life ambulance equipped for Cayman's transport was coming from an hour away, the facts and hazards to being in a small country town far out from the city.

It took another hour of administering medication - lots of medicine - enough to have stopped a seizure in an adult before they were finally kicked for Cayman.

Her body relaxed. No more shaking, no more eye rolling. She slept. Her breath steady but chest rising and dropping hard. Rumbling heard in the lungs through a stethoscope accounted for possible aspiration. When she vomited during her seizure she was not conscious enough to clear it and the substance from her belly was breathed into her lungs.

{finally the seizures were stopped and she slept}

Andrea, an adored friend of ours living real close by, came up to the hospital to be with Kobe during this craze.

Then my mom arrived.

When transportation made it on scene we split off in different directions. Andrea went home. Mom and Kobe went back to Grandma's place. I rode in the back of the ambulance with Cayman. Mike drove our vehicle following behind.

{in the ambulance}

Cayman's vitals remained stable as she slept. The paramedics looked after her in perfect ways and provided for me comfortable conversation for passing the long two hour trip to Ann Arbor.

When exiting highway 23 in route for the hospital, Cayman opened her eyes for the first. Tiny slits between eye lids, lashes blinking - so beautiful to see life awakening! The Michigan fan paramedic chuckled, "It's this fresh wolverine air that she likes to awake to." That joke was reserved for Mike of course and passed onto him later. Daddy is absolutely certain that is not true. :)

And while on the note of telling the funny, I'll share my foot-in-the-mouth moment that's humorous: The last time Cayman was brought to U of M's emergency department was in May, six months ago. She was placed in the same exact room as the time before. I remember well because Tinkerbell was painted on the window and she was unforgettable.

You may remember my brief blog mentioning of Tink with a caption reading as followed: "A more than slightly disturbed Tinkerbell painted on the window of Cayman's room in the E.R. Either that or a mad Pinocchio has started to wear Tinkerbell's clothes."

As a team of nurses showed us to room 1 of the emergency department I noticed it was a different painting on the window. "The scary Tinkerbell is gone." I stated out loud. And it's possible I may not have ended the sentence there and elaborated a bit on the depiction of Tink's appearance.

Mike sarcastically says, "And watch, they're one of the artists that drew Tinkerbell." he motioned toward the nurses surrounding us, listening in.

Next to me stood a male nurse that shyly piped up, "Actually, it was me that drew her."

Boy was my face red!

In spite of the awkward [and stress] looming, we all could laugh.

And now that I gave you a nice laugh break from the serious, back to the intensity...

At the U of M's E.R., the most crucial and common question was explored - is this a shunt failure?

A CT scan of the head was done. Mike and I walked, hand in hand, behind Cayman lying in a hospital bed wheeled to radiology. She was still awake and stretching her neck to never lose sight of us. She made us smile.

We stood outside the room. The "In Use" light turned on. Scans being taken.

Just behind my shoulder memories materialized. It was the same room, the same exact spot Cayman was brought to the day her heart stopped a year and a half ago. Always, I carry that day. Not with heaviness, as one might think. Rather a confidence that if disaster strikes God carries me even there.

In that messy, ache piercing day, I remember His faithfulness in the details and I see - my thanks fed my trust. The pieces of shelter from the storm He provided counted up as ways to humbly let go.

*(Have you read, One Thousand Gifts by Ann Voskamp? You must!)*

{After x-rays, she fell asleep in Daddy's arms.}

X-rays were taken, routine for checking the entire shunt system for detached parts.

Nothing was found broken. CT scan showed stable ventricles. A shunt failure was ruled out.

Blood was drawn - all came back normal. No fever. No signs of any other illnesses.

Only seizures.

That elicited a call to Neurology. It was like waiting for the Grim Reaper to show up, ushering us onto a path we have fought so hard to stay away from.

Epilepsy.

You may - or may not - remember that time 6 months ago when Cayman was flighted to Ann Arbor. We had found her in a similar fashion lying in bed awake vomiting but not with a strong consciousness. She had come out of it on her own. A shunt failure was ruled out then too. That incidence was never pegged with a cause to what really happened.

But when it happened again, and this time returned with a vengeance, a seizure so strong and stubborn it took a lot of medication to break it, pushing past the hour risking endangerment of Cayman's brain, it stirred the attention of Neurology and us too.

She was admitted to the PICU.

An EEG conducted, searching for ab-normal brain waves.

{28 electrodes attached to her head, and chocolate on her lips from Mommy's chocolate chip cookie}

No new seizures were recorded during the 25 minute scan. All normal brain waves noted except for one area on the right toward the back, where they were slightly slowed. The doctor called this postictal, the effects following a seizure, the area of the brain believed where the seizures originated from. During the seizures convulsions were seen on the left side of her body, and her eyes jerked to the left. And since we know the brain controls the opposite side of the body, the postictal waves recorded on the EEG made sense as the origin.

{Grandma Cindy brought Cayman an Elmo. He helped her get through blood pressure readings, temperature takings, and an EEG. They went through all of it together and Cayman was more compliant to have her ping-pong eye-ed friend there with her.}

{playing with her iPad during the EEG hookup}

{Lots of tiny wires.}

{Daddy held her during the EEG. She was too wiggly in bed for a smooth recording.}

{Brain waves.}

Afterwards, a thorough head shampooing to remove all the goop that goes along with an EEG. And a beautiful gown of her very own and a hair bow to match (a gift from Cayman's friends in Atlanta).

The nurses swooned over her and so did we. Cayman was too tuckered out to care. I thought she would go to sleep but then a doctor came in and she saw his stethoscope around his neck. That changed her dopey condition.

"Ah me, ah me, ah me." She said sitting up in bed reaching for the stethoscope.

I have no idea exactly what words "ah me" simulates. We have simply learned it means she wants whatever it is she is seeing. And the fact that verbalizing to express a want is a milestone we were uncertain would ever be hers, we still become giddy when we hear her voice in this way.

"Ah me."

And because she is SOoooo cute, she got to play with a stethoscope...

{Dr. Cayman gave Elmo a check up.}

The Neurologist advised a plan, to place Cayman on seizure med's. Best case scenario, for two years. Lots of questions Mike and I had. Lots of answers given but only led to more questions. The process has been pretty much like walking around with two left feet. Circles. Circles of thinking. The ends brings us back to the beginnings.

{Sleeping on Daddy's shoulder waiting for discharge paperwork to arrive.}

We left the hospital with an emergency dose of diastat to be used in a time if Cayman is seizing longer than 5 minutes. Also, with a prescription for Keppra, a seizure medication. Our minds heavy balancing the benefits verses the risks to putting her on a regular prescription, one that its job is to inhibit.

On our way home we made a stop at the Naturopathic Doctor's office, our main 'go-to-guy' advocating Cayman's care since I was 22 weeks pregnant with her. Not many Saturdays he is in the office, but this Saturday he was. There was one cancellation in the mid afternoon that coordinated perfectly with our hospital discharging schedule. We nabbed the appointment time, grateful to seek a second opinion so soon. Waiting is hard, especially when it's under such pressing matters.

{Testings done by the scanner at the Naturopathic Doctor's office.}

We value the opinions of the medical field. They always provide wonderful urgent care and have Cayman's best in mind. We also value the opinions of this Naturopathic Doctor who we appreciate him for the scientific reasoning behind what is happening and why 'it' occurred, whatever that 'it' may apply to from situation to situation.

We came home, minds swirling with the benefits verses the risks to each of them. Lots to think about - one big decision to be made. Seizure medication or NO seizure medication?? The choices pressed full.

But there is a lot of good wedged tight in minds and hearts too...

There was our same living-away-loving-life Cayman we got to bring home. There was peace from engulfing love of prayers coming from all over. There was words of love and support left in email and on facebook. There was comfort in turning to my mom to look after Kobe perfectly while I was away at the hospital. There was the refreshing feeling returning to a clean house - my brother's doings. There was supper provided so we could just relax - from my in-laws. There was a heavenly dessert left on the front door step with a welcome home party bag for Cayman filled with all things Elmo - from her preschool teacher.

There is love, so much love wedged in our hearts from all of you.

So much thanks, joy multiplied for this here, this now we've got!

Thank you!

~~~~~~~~~~~~~~~~~~~~~~

And for the record, Cayman may have possibly just wanted to say good-bye to the old hospital where she was born and where all 14 surgeries have been performed. She was discharged on Saturday, the last day patients were in the old Mott's Children Hospital. Sunday was moving day into the new shiny facility. I hear it's amazing! Maybe we'll never get to know it for ourselves and that would be alright. But I seriously doubt it. After all Hydrocephalus is a lifelong diagnosis. A cure would be nice, but mostly I think we are quite lucky just as we are.

{Driving passed the new Mott's Children Hospital at U of M.}