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Monday, April 30, 2012

One Year


It was 3:30 am on April 30, 2011.  My husband brought our whimpering 11 month old to me in my bed for his regular nightly feeding.  But, this time was different.  As he handed him to me, he said, "He's making some sort of weird twitching movement.  Maybe he's cold?"  I began to climb out of my sleepy fog and realized that it was more that just a "twitch."  I took him upstairs and began to nurse him, and he continued to jerk to the right. His head and right leg seemed to be trying to meet in the middle of his body, but only for a second and then they would return followed immediately by another jerk.  He seemed to be looking at me, and was still nursing but the movements were continuous.  Something in that moment made me stop and think, "If he would for some reason need surgery he needs to have an empty stomach."  So, I stopped nursing him and handed him to my husband.  I called the on-call pediatrician who happened to be a very well-trusted nurse practitioner, but by the time they had paged her and she was calling back I had pretty much decided to call 911.

Have you ever dialed 911 for an actual emergency?  It's a bizarre and surreal moment, punching in those numbers that you learned about in Kindergarten.  You are told how to dial them, and the importance of remaining on the line until help arrives.  They tell you to make sure you know your address so that the ambulance can find you.  What they don't tell you, and could never correctly convey, is the fear in the pit of your stomach and the sort of buzzing sound in your head as you dial those familiar but foreign numbers for the first time.

I remember going outside.  I was shivering, but I don't think it was cold.  I remember looking at my son in my husband's arms and feeling tears running down my face.  I remember the fear, but I also remember the scientific/nurse/logical side of my brain being activated:

"This is probably just a febrile seizure.  Children have them all of the time, and although they are scary we will go to the hospital and they will give him some drugs to make him better.  That's what this is.  I hate it now, but it will be over tomorrow..."


I remember hearing the sirens coming toward my house.  So now, I'm feeling tears, shivering from something other than cold, and hearing sirens. The buzzing is still activated in my brain and I steal a glance at my husband. He hands my son back to me.  My rock, my safe place, my solid ground when everything else is crumbling...and I see fear in his eyes.  NO!  You CAN'T be scared right now!  It's my turn!  I HATE seeing your face like this.  I can't take away your fear and pain because I don't know what's going on either.  PLEASE stop being scared.

The paramedic looks into my eyes and silently takes my son from my arms.  I climb into the back of the ambulance and they begin giving him the routine medications for seizure control.  They apply oxygen to his face, and still the twitching continues.  It takes FOREVER to arrive at the hospital, but when we get there and I glance at the clock I realize that it is only 3:45.  I woke up 15 minutes ago, but somehow it was also 10 years ago.

The team worked quickly.  They made decisions, gave meds, called our regular pediatrician.  He came.  More meds given.  My husband arrived.  The whole time people are buzzing around my head.  They are saying things to me, and I am answering them.  But, all I can focus on is the mental image I have carried with me for now 365 days.  My tiny little boy was lying in a sterile, white hospital bed.  He had on his little red car pajamas.  I sat next to him and he had brief moments between jerking movements where he would whimper and reach for me with his good arm.  He looked straight at me..."Mamamamamama!!"  Asking anyone to make it stop, but reaching for his momma.  And then that beast of a seizure would slam him back to the bed and he would be gone once more.  This continued over and over and OVER and OVER again:

"I CAN'T MAKE IT STOP!!! SOMEONE MAKE IT STOP!! CAN'T YOU SEE HE'S HURTING???  I need to help him.  Someone help me help him! NOW DAMMIT!!!  I am here, sweet boy.  Mommy isn't leaving.  I'm holding your hand.  Can you feel me?  I'm right here...I'm right here..."


And now, I'm the child.  I want MY mom.  But, she is out of town and calling her will only scare her more than she could help.  My second mom is here.  I can call her.  She will know what to do to make all of this go away.  She'll know what to say.  I call her.  The seizure doesn't stop.


Words.  Phrases.  Continuous streams of words and phrases being shouted around me.  "We need more medication."  "We need to intubate."  " He needs to be shipped to St. Louis Children's Hospital."  Ok, the seizure isn't stopping.  I have to do three things.
 1. Stand by my son as a tube is placed in his throat to keep him breathing.
 2.  Pick up my purse, and walk beside him to the ambulance.
3.  Arrive at the airport on join him on the tiny airplane that will take us to St. Louis.

These are the only three things that I can do.  My brain is now empty except for these three things and the mechanisms I need to be working in order for me to continue living.  Heart beating.  Breathing.  Those things and the steps that will get me to the place where people can help my son.  I can do this.  I can do this.  I can do this.  The plane is waiting for us, and we board for our 40 minute flight.  There was so much turbulence and the weather was so bad that the medical personnel on the flight actually hit their heads on the ceiling.  It was a bizarre thing to notice because I'm afraid of flying.  But, at that moment I just watched from somewhere outside my body as they were thrown around the plane but I felt no turbulence from my seat right next to them.  My eyes were locked on the lifeless little boy in the bed:

"Don't die baby.  Please don't die.  I love you.  That should be enough, right?  Don't die.  We're almost there."


We arrived at the St. Charles airport and they moved us to a Children's Hospital ambulance.  Easton was in the back with the medical personnel and I was in a middle cab...alone.  It was at this moment that I began to "feel" again.  I looked out the rain-stained window as we pulled up to a stoplight.  I saw a mini-van next to our ambulance and in the back seat was a curly-haired little boy around 18 months old.  He didn't smile, or wave emphatically as babies often do.  He looked straight into my eyes and slowly put his hand up to the window and held it there.  This was my moment.  My moment to be with my baby without actually seeing him.  And everything about this little boy was right...except his eyes.  He had large, round BROWN eyes.  My baby has ice blue eyes.  I couldn't stop the tears then, and I didn't try.

We made it to the St. Louis Children's Hospital PICU.  More people.  More words and phrases buzzing around my head. I was talking and answering questions on occasion, but mostly just stood there silently. I was the wide-eyed child, trying to soak up all that was going on around me, but retaining nothing.  Some nurse was telling me where the bathrooms were located.  Where the cafeteria was, and how I could sit in the lounge later if I wanted to take a break:

"Take a break???  From what??  Why am I here?  I'm not supposed to be here!!!  I'm not one of these parents!! Why are you all looking at me like you expected me to be here today!!  This isn't my life, and that little boy, while beautiful is NOT my son!  He is animated and wonderful! He likes ice cream and his momma.  Why don't you know that?  When can we go home and pretend this isn't happening?"


Things kept happening this way.  More pieces of life-saving hardware were pierced through my baby's skin. More medications were pumped through his veins.  More tests performed. More. More. MORE.  Until at some point, I just fell over from exhaustion. I remember a nurse nudging me awake and telling me to look at the EEG screen that was measuring his brainwave activity.  I see that it no longer looks like a tangled mess of wires intersecting in all the wrong places, but is now a completely flat line.  Am I supposed to be happy that the seizure has stopped, or fearful because my son's brain is completely shut down?  I look at her face for the answer to the unasked question.  And that's when I know.  She wasn't sure that it was ever going to stop, and she was elated that he was "no longer suffering."  They had been thinking he wouldn't make it out of this.  That was becoming abundantly clear.  The next move I make is toward the clock.  It is 3:50am.  Twenty-four hours.  It is my birthday.

Saturday, April 28, 2012

Life can be funny sometimes, and sometimes it can be down right ridiculous. Life with Shannon Zanger is extra special.  I've told this story so many times in the last week, and every time I hear the words coming out of my mouth it seems more and more unbelievable.  I guess I could actually turn my life story into a book, but the problem is, I don't know if anyone would believe it.  Trust me, if I hadn't lived it I certainly wouldn't.

I guess you could say that my life has been a little crazy over the past year.  My son did contract a common illness and have rather catastrophic side effects as a result, but we are managing.  We're learning every day and dealing with things as they come.  Some days are harder than others, but we still laugh and life has sort of taken on a "new normal."  However, during one of our recent trips to St. Louis Children's hospital, life got a little more interesting.

Easton had a hematology appointment in the morning, and my sister was nice enough to come along for the ride.  We decided to make it a "fun" trip and include a little venture to the zoo with the youngest of our combined 7 children.  We only had 4 with us, and considered that to be a piece of cake! And, it was...for awhile.  Yes, life was all rainbows and roses for the first half of our trip. Our perfectly behaved children were having a blast at the zoo.  We saw all of the animals that they had asked to see and rode the carousel three times. It was pretty much the perfect day.  But, my sister should know better than to expect a smooth and uneventful day when she's travelling with me.

I left my sister, Callie, and the four children at the front entrance of the zoo.  As I was walking up the hill to get my van, I noticed some young men walking seemingly aimlessly around the parking lot.  I also saw two vehicles parked behind mine and I was exasperated at the thought of having to wait for them to move.  I still needed to pick up Callie and the kids!  So...my naive little self pressed the unlock button on my keyless entry so that the people would know that someone was coming and they'd move.  Well, they moved alright.  In fact, I would say that "peeled out" would be a better descriptor.  However, because I am a country bumpkin and completely out of touch with reality, I still didn't realize that anything was amiss until I saw that my passenger side window was no more. Yep, I had been robbed.  Now, I'd like to say at this point that I looked for the important things in my vehicle, but to be quite honest I was mostly concerned that they may have taken my sandwiches from my cooler.  I hadn't eaten all freaking day and that was just REALLY going to piss me off.  I then thought about my purse, and of course both mine and my sister's purses were gone.  But, the thing that really had me going crazy was the fact that they had stolen my son's epilepsy medication.  Ok, assholes, now you've gone too far!!  Giving this medication isn't an "option."  We can't just skip a day and give more tomorrow!  So, I did call 911 but after hanging up with them my very next call was to my local pharmacy and thanks to ShopKo of Quincy, the meds were ready and waiting for us when we got home!  And let's not forget that I was the only eyewitness, so I had the privilege of riding in the back of a squad car in hopes of identifying what ended up being the WRONG vehicle.

So, my sister and I have had a great time dealing with frozen checking accounts and all of the fun that entails.  And one may think, at this point, that this is enough drama for one person in one week.  However, I told you that this is ME we're talking about and a crime spree in which eight cars were broken into and one truck was stolen just isn't enough for this girl.  The following Wednesday, my husband and I went back to St. Louis for a meeting to learn about our son's new diet.  We tried to make it back relatively quickly because some great friends had actually asked me to GO OUT!!  ON A SCHOOL NIGHT!!  WITH OTHER ADULTS!!!  I was really pumped, so I should have known that it wasn't going to happen.  As I entered my house, I noticed a sort of dark pile of something on the landing of my steps.  When I turned the light on, I saw that it was a pile of about 30 dead bee carcasses.  And there were around 40 crawling/flying around my front door.  ARE YOU FREAKING KIDDING ME?!?!?!?  These things were INSIDE my house!  As I looked around I noticed hundreds of them.  We had a nice little bee plantation going on right in our damn living room.  Soooo.....I packed up as much crap as I could into one bag (for 6 people) and we went to stay at my sister-in-laws house.  My husband set off one of those bug bombs and we hoped for the best.  The next morning I called the pest control people and asked them to come as quickly as they could...but, oh wait, I can't actually PAY you when you come because guess what?  My checking accounts are still frozen.  Perfect.  When I explained the dilemma to the receptionist at the pest control place she just said,  "Are you kidding me?"  No, no I'm not lady...trust me, I really wish that I were.

So, we can look at the past week in two ways.  You can see all of the seemingly "terrible" things that happened, or you can choose to see the positive things.  For example, my family made it home safely after the robbery of our van, and my son received his medication as scheduled.  None of my children were stung by any of our new winged inhabitants and we have family that is kind enough to let us invade their homes on a Wednesday night at 9 pm.  And above all else, those bastards are lucky they didn't take my damn sandwiches!!

Sunday, April 8, 2012

Happy Freakin' Easter

Last Easter 2011:  Son contracts life-changing illness...check.

Exactly a year later we are planning a trip to a big, scary hospital to get help for our big, scary problem.  But, to make it feel a little better we've decided to make it a "family vacation."  Well, sure.  However, I seem to have forgotten who I'm dealing with here.  We can't just have your normal, taking-a-five-hour-trip-with-4-children-is-stressful kind of trip.  Oh, GOD no!  We've got to make it interesting.  So, the day before we leave, my rather well-proportioned 4-year-old says, "I don't feel like eating breakfast today, Mommy..."  Well, shit.  That's not a good sign.  Thermometer time...101.5.  Perfect.  And OF COURSE it's Saturday so NO ONE on earth is working.  We get to go to ambulatory care.  When we get there, I notice a nice little rash all over her body.  Doc decides he's pretty sure it's a strep rash (aka-scarlet fever.)  Well, of course it is!!!  We don't mess around with your run-of-the-mill cold in these here parts.  So we get an antibiotic and good ole doc says, "It should be fine, she'll feel better pretty quickly."  Yeah, ok, dude except now can you tell me what I do with the immuno-compromised epileptic 2-year-old that I have at home?  What do I do when he gets it three hours into our 6 hour trip?  What's YOUR plan then?  I didn't think so.  Of course, I make a call to the on-call pediatrician because I've learned to be a pro-active psychotic freak.  She is obviously NOT from our normal medical group and knows nothing about Easton.  Awesome.  So,  I'm sure she thinks I'm a lunatic because I'm calling for a "possible" need for an antibiotic, for a "possible" illness that my child may "possibly" contract in a couple of days.  Yeah, well, lady I've sort of been around the block, ok?

Well, no problem, 4-year-old seems to be feeling better after one dose, everyone is washing their hands like it's their job, and so far so fever for the epileptic.  Oh, but then we try to go to sleep.  Six-year-old wakes us up at 1am to tell us that 4-year-old is puking.  Sure enough...vomitrocious.  Then at 3:30 am some asshat squeals his tires in front of my house and wakes me up...AGAIN.  Here's the thing dude, I CANNOT be woken up at 3:30 am.  It happens to be a very difficult time for me, and one that's wrought with horrible images and nightmares.  So of course, I do not go back to sleep until around 5:30am.   And guess what happens at 6:45?  All three of the big kids are up and ready for Easter!  So, we get up and start looking for those adorable eggs that the adorable little bunny left for us...that is until my adorable 4-year-old starts her adorable vomiting marathon.  Approximately every 20-30 minutes she heaves into a bucket and I follow her around wiping things off with clorox.  So much for a "quick" recovery.  And what are we supposed to do today????  Oh, that's right...ride 6 hours in a van TOGETHER with a vomiting 4-year-old, a 6-year-old that's ridiculously freaked out by vomit, and the two-year-old ticking time-bomb.

I think it's pretty safe to say that I was a prostitute/assassin/criminal mastermind/proctologist/(or any other horrible profession that comes to mind) in a past life.  I may even have been Judas.  If so, I apologize.  Happy Freakin' Easter.