A Month of Illnesses

It's been a month of health issues.

On November 30th...

We were in the middle of a school meeting that morning with Cayman's teacher and therapists when she became very pale and tired.  She laid against Mike listless like she might fall asleep.  He passed her to me so he could look after the operative Kobe who was roaming the room looking for chaos.  I noticed along with Cayman's paleness she had decreased muscle tone.  Although awake and coherent she was limp, weak in the arms and legs.  Then she threw up all over the both of us.  That ended the meeting fast.  We hit the road for the hospital, not quite sure what this was.  Always when there is vomiting with the combination of lethargy a flag goes up - is it the shunt malfunctioning??  We headed toward Ann Arbor, Mike driving and me in the back balancing calm normalcy for Kobe and keeping stats monitored on Cayman.  She kept wanting to fall asleep.  Which if this was the flu maybe she just needed a good rest to feel better, I thought to myself.  But if she went to sleep it was harder for me to monitor her neurologically as well.  I chose to try my best and keep her awake for the 45 minute drive, interacting with toys and talking about what Brother over there in his car seat was doing.  She eventually spaced out completely although still awake.  She moved her eyes looking around but it's like she wasn't really in there.

 

That's when we got nervous.  That day her heart stopped beating 2 1/2 years ago haunts us in these kind of moments.  She had become quiet and less appropriate responding like this until her brain and heart conked out completely.  Now there's been similar times to this that did not transpire into the parents' worst nightmare reoccurring.  So it doesn't always mean that is what will happen again.  It's just that we don't know which time is the more serious and which are mediocre in comparison. But the fear is that hindsight will leave a heart full of remorse and a mind tortured with the "I wish I would have..." and "If only we'd done...".  So we called the ambulance. They met us on the side of the road and Mike carried Cayman's limp body onto the ambulance.  We switched places and I joined Cayman.  She perked up a little and even tolerated propped sitting up while we road.  All that nervous activity of unknowns with a pregnant belly in the back of a bouncy ambulance, I really regretted not putting the zofran in my purse that morning.  I didn't but there were a few times I thought I might join Cayman in vomiting on that trip. 

In the ambulance.

She had puked two more times in the van and then again in the ambulance.

At Mott's ER Cayman was looking the same.  She'd wake up and follow some directions but pretty out of it.  She didn't flinch or cry out in pain when they started her IV.  She didn't put up a fight about anything.  Then she fell back to sleep and could not be aroused awake at all. 

The medical staff began to rush along the process, calling the neurosurgeon and warning the OR she might be headed in soon.  She was put in a larger room and intubation equipment was pulled out for a quick intervention if it became necessary.  

Kobe and I hung out in the waiting room together during the more intense times, keeping things calm for this little guy's emotions.

 A few minutes later she went in for a fast MRI.  And it was in the middle of that test when she woke up as if none of the day's previous intensity had ever happened!  Awake and talking, about 80% from her baseline, wanting to eat and drink.  So weird.

This is her highlighted love, to be pushed down the hallway in a bed! It makes her happy!

She won herself an admittance to the hospital, a night of having mommy and daddy all to herself.

Sister and Brother saying good-bye to each other.  They were crying because they were irritated by each other's presence, not getting along sitting on the bed together.

Kobe went home with Grandma Sue and Grandpa.

Daddy entertained Kobe with wheelchair rides in the hallway.

And the next day, all was still great!  Everything was normal again.

In the hospital's play room, with a major condition of bed hair.

Stretching the legs for a little stroll.

Peek-a-boo Momma!

Meeting Star Wars characters.  Cayman was not a fan!

Getting her IV out for discharge!

Cayman's hospital room, a room all to ourselves in the gorgeous and new Mott's Children hospital.

Leaving the hospital wearing Kobe's coat and hat.  By accident his was left in Cayman's hospital room when he went home with Grandma and Grandpa.  And so instead of going all the way back to the room to get it, Kobe was given Cayman's pink and green coat to wear which was in our van.

That event played over and over in my mind's need to mystery solve.  I think I figured it out, answers feel good to derive.  About 15 minutes before the school meeting I gave Cayman her morning dose of a homeopathic remedy for seizures.  I also gave Kobe some chamomile, that natural remedy found in infant teething tablets.  He had been so crabby and I suspected he might be cutting his 2nd year molars.  Cayman begged for some too.  She's had chamomile before, we gave it to her as a teething babe too, so I had no reason to think there was harm in it for her.  At the least and the very best I thought it'd help the kids be calm and relaxed for an uneventful school meeting.  Ha!  The irony of life will getcha.  From all this I later learned chamomile releases serotonin.  And so does the homeopathic remedy.  Serotonin is produced by the body and is needed for the nerve cells and brain to function.  It's a good thing.  However, too much serotonin released can cause issues, such as a seizure, especially for someone already prone to them.  And that is what we believe this incident was - an isolated subclinical seizure.  A first time for this type of seizure to occur for Cayman.  And hopefully, now that I understand its trigger, it will be the last!  And Mr. Shunt is still thriving and was ruled out as a suspect in that day's mayhem. 

December 6th...

I took Kobe to the doctor.   His crabbiness was escalating and he was just not himself. 

Both ears infected!

He was started on an antibiotic.

December 18th...

I got a call from the preschool.  Cayman was in the nurse's office with infected eyes.  Another trip to the doctor's office confirmed she had pink eye and Kobe's ears were rechecked; one ear healed, the other worsely (is that a word?) infected.  He went on a different antibiotic, a stronger one.  And Cayman got antibiotic eye drops.    

They're lovin' the dum dum suckers they get at the doctor's office!

Later that evening Cayman spiked a high temp and went into a febrile seizure.  Her bufoon parents missed that tiny and only slightly substantial fact that she was fevering.  Had we realized that we would have immediately gone into fever reducing methods: stripping down to a diaper, cold washcloth, and Tylenol.  Instead we cuddled and consoled her, whispering comforting words in her ears.  Then her lips and fingers lost their pink hue and turned blue while she continued to seize.  We immediately administered the emergency diastat and the seizure soon ceased.  Being blue and having diastat in her now we called 911 for that extra help.  She was taken by ambulance to the local ER.  She was sleepy, naturally, after a seizure, being sick, and being given diastat will all do that to a person.  But she seemed 'normal' sleepy, not the same alarming lethargy we have seen with a shunt malfunction.  So it was not pressed to move us onward to Ann Arbor.  We went through a checklist series of tests to find the probable cause of the fever.  A chest x-ray done, checking for pneumonia (she had congestion and a cough), blood work, a flu swab, etc.  All came back normal.  And since such processes are never too speedy in a hospital we finally were discharged to leave at about 11:30 p.m. (spending about 4 hours in the ER).  Kobe, although a trooper through it all, was pushed to his toddler limits of all he could handle tiredness-wise and had become a hand full. 

The evening first started out with his enjoyment and contentment to peak under the room's curtain to say hi to all the nurses walking by. 

Then it moved to him pushing the exploratory limits to try escaping the room.

And when we shut the doors behind those curtains to keep him in, incessant crying was activated.

Who could believe with such a sweet face as that he could ever be an ornery handful, right??

December 19th...

The next day I loaded the kids up and headed an hour north to the Naturopathic Doctor's office.  I wanted to get a good preventive plan on board for Cayman with a healthy dose of boosting for immunity and tweak the anti-seizure plan.  I recall this day through a fogged memory.  My body completely exhausted and in need of rest.  And kids, despite being sick, always maintain a certain high active level.  (For the record, I did survive. *wink*)
 

December 26th...

Back to the doctor's office we returned in the middle of a snowy blizzard.  The pediatrician is just around the corner from where Mike works, which is also now only a 10 minute drive away from our home (have I mentioned how much I love living closer to these kinds of places??).  Mike took his lunch break during that appointment hour to help me with the sick kiddos. 

Kobe repurposing daddy for a jungle gym.

Cayman still had the same congested cold going on for over a week.  Kobe was still extra crabby himself with the same congested cold as Cayman and infected eyes now too.  

Cayman's cold had turned into a sinus infection and she received a script for an antibiotic.  Kobe still had both ear infected and was put on a third and different type of antibiotic as well as eye drops.

What a mess my children are!  Sweet babies.  

We're working hard to get them feeling well so we can continue the festivities of this holiday season with lots of fun memories to be made.

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.}