Sunday, March 31, 2013

Hiatus


You've probably noticed that my blog frequency has dropped off in the past couple of months.  I have felt bad about that, but time has not been on my side.  I truly enjoy sharing our family's story and adventures, and hope that there are many of you out there who look forward to our updates!

But life is happening around us, and the time to write about it gets shorter with each passing day.  Everyone is healthy and happy, so don't worry about that.  But after work and school and therapies and togetherness, I find myself debating between blogging and sleeping.  Sleep usually wins out, and my immune system has been thanking me.

The next few months promise to be exceptionally busy ones for us here.  I promise that at some time in the future, I'll be able to sit down on a regular basis again and share our story. That time just isn't now... and I'm trying my best not to feel guilty about that.  I may intermittently post funny quips or photos, so check in on us when you can (or sign up on the blog to receive email updates whenever I post an update).

And no, this is not an April Fool's joke.  Its really just unfortunate timing.

Tuesday, March 19, 2013

March madness

I grew up in Maryland.  My house was less than 5 miles from Cole Field House - the past home of the University of Maryland Terrapins basketball team.  My dad was a student at the university shortly after my birth.  We were a Terps family.  We cheered for all Terps sports, but especially football and basketball.  We cheered for all teams who played against Duke.

When I went to Syracuse for graduate school, I had to (sarcastically) beg permission from my brother and dad to cheer for my college team.  Having gone to a smaller undergraduate school where the football team played their biggest games on the soccer field, it was fun to go to a big sports school for grad school.  But at heart, the Terps are still my first team.

A few weeks ago, Luke broke my heart and cheered repeatedly for Duke when they played a basketball game again Maryland.  I was devastated.  I had to take a moment to collect myself, and finally convinced Luke that we were a Maryland family, even though Duke was beating the pants off of them.

So imagine Luke's surprise when we took the family to a Duke lacrosse game this past weekend.  They were playing against Towson, who he decided to cheer for because "they weren't Duke."  He's learning.

It was a gorgeous day, so after the game, we decided to take a walk around campus.  Most of the students were either on spring break or in Greensboro for the ACC tournament.  Say what you want about Duke sports... they have a beautiful college campus.









Monday, March 18, 2013

When you're sliding into first...

Oh the life of a two-shunt family.  Vomit, headache, sleepiness, fever... for most of you out there, those would be symptoms of a good old fashioned stomach bug.  For us, that's a trip to the ER and some serious diagnostics to determine if someone has got a malfunctioning shunt.  If you're able to remember back this far, to the first ever NC Slaviks blog post, you'll recall the issues that we used to have trying to decipher between stomach bugs and shunt malfunctions.

And if you're keeping track, Luke and Will last had a shunt malfunction in the August/September time frame of 2008.  That was back when we had three shunt surgeries in less than a month.  Oh the good times.

And in the case that you were wondering, the typical shunt last 5 years.  Awesome.

Luke started complaining on Saturday afternoon that his stomach hurt.  We got home from a lacrosse game, just in time for him to run into the bathroom and puke.  A lot.  He slept for the rest of the evening.  He woke up in the 3 in the morning with a fever and another round of yuck.  He couldn't keep Tylenol down.  Two hours later, he was back in front of the pot.

Unfortunately around this time, he also started complaining of headache.  And then he went back to sleep.  Add it all together, and it sounded to us and the UNC pediatric neurosurgeon that we needed to make a trek into Chapel Hill to get things checked out.

Off we went.  I've learned some things in my years of getting shunts checked out - first I learned that a trip to the ER can be a 12 hour event.  Then I learned that once you're in the ER, if you have a shunt and a suspected shunt malfunction, you don't actually need to see a doctor to order a shunt series x-ray and a CT.  Perhaps that seems a little weird.  To me, its an opportunity to shave 4 hours off of the ER visit.  If we waited to see a pediatrician, they would have wanted us to see a neurosurgeon.  The neurosurgeon would have come down an hour later to tell me that they wanted x-rays and a CT.  And then we would have been at the exact same place, only a few hours later.

Honestly, anyone who has been to an ER knows it is a lot of hurry up and wait.  I'd just prefer to wait less.   So we arrived in the ER, put in the orders for the radiographic tests, got Luke settled, and waited for his puking to stop.  We had been there for less than 20 minutes when they came to get us for the x-rays.  We hadn't seen a doctor yet. 

He braved it well through his x-rays, holding still, holding his breath and counting to 10 like a little champ.  He was a bit concerned about the CT because they wrapped his body with a big Velcro strap to keep him from rolling off the moving table.  But he made it through that well too.

We got back to the room just in time for another round of nausea.  We saw a pediatrician who said that they were seeing a lot of the stomach bugs going around, and that they were going to take some blood and urine to rule out infection or other non-shunt causes.  I was good with this, though I believed firmly that we were dealing with a shunt issue.  I figured a GI bug would have both affected... um... other parts of his GI tract AND being that there are several other people in our house, figured that others of us would have been affected.  But hey, a couple of diagnostic tests are never a bad idea.

The neurosurgeon also stopped in to see us.  He was happy to see that we'd already gotten the x-rays and CT taken care of (little momma pat on the back).  He said that Luke's ventricles (fluid filled spaces in his brain) looked a bit enlarged from the last time he got a CT.  Of course, the last time Luke got a CT was in 2009, and his brain has done a lot of growing in the past 4 years.

But they couldn't rule out potential shunt issue with the combination of all the symptoms.  They thought a shunt tap would be the logical next step.  I had to agree.  As much as I didn't want Luke in pain, the only way to firmly diagnose a shunt malfunction is to stick a very very very small needle into the shunt (through his scalp) and measure the pressure of the fluid in his shunt.  If the pressure was too high, then the shunt was malfunctioning and causing his symptoms.  If the pressure was good, then the shunt was working properly and the symptoms were likely caused by a GI bug.

Before they came back in to tap the shunt, they came in to start an IV line in Luke's hand to give him fluids and anti-nausea medicine, and draw blood.  It has been a very long time since he's been given an IV (like nearly 5 years!) and although the nurse did a great job, this was pretty traumatic for Luke.  He did NOT like that he was bleeding.  And he was fixated on the IV when they were done.

The surprise and the prick of the shunt tap drew his attention away from the IV.  It was very hard to explain to Luke what was happening or why.  We've never actually had the "why you have a shunt" conversation.  He knows that he has a bump on his head, but he hasn't seemed too interested in the 'why' part of it yet.

So while the neurosurgeon waited for Luke's pressure to show up on his diagnostic tools, I tried to keep Luke calm underneath the surgical drape.  To say it was challenging would be an understatement.  He kept trying to grab the needle sticking out of his scalp to stop the pricking feeling.  I kept trying to stop him with one hand, all the while holding his chin still and firmly to the left with the other.

I could tell something wasn't going well though, by the look on the neurosurgeon's face.  He announced that the pressure was a 9 - which doesn't mean much to me except to know that anything above 12 usually means we're headed for immediate surgery.  Then he said that the distal catheter (the part of the shunt that goes from Luke's scalp to his belly) was draining very slowly.  He wasn't sure what to make of it, and went to confer with his neurosurgical team.  He also sent some of the cerebral spinal fluid to be tested for infection.

Luke didn't care too much about the IV after the shunt tap.  At this point, he was exhausted, his stomach hurt, he had a headache, now he was bleeding in two places (not really, but from his 6 year old perspective, you get the logic) AND his head was covered with an exorbitant amount of betadine (the yellow cleaning solution they used all over his scalp before the shunt tap).  Thank goodness there was a NASCAR race on to divert some of his sadness.  Soon, he was asleep.  The fluids and the anti-nausea medicine were making him much for comfortable.

All the labs came back negative.  I waited for word on the shunt.  Finally, the neurosurgeon came back.  It took a while for him to get to his point.  But ultimately what he said was that if Luke's shunt was actually malfunctioning, the pressure in his head would have been a whole lot higher.  The fact that his distal catheter was running slow says to the neurosurgeons that Luke's body may have actually found another path for the cerebral spinal fluid flow - basically that his distal catheter MAY actually be blocked, but it isn't causing Luke any trouble.

So, everyone agreed that there was no shunt issue and that Luke's troubles were the cause of a GI bug.  I never want my kids to have surgery, so this was completely fine with me.  Despite everything that had been done to expedite our ER visit, we were still there for 7 hours.  Luke was happy to get in the car and go home, and was asleep before we pulled out of the parking lot.

He woke up this morning still feeling very tired, but his stomach and headache had gone away.  He spent the day off of school, hanging out with Oma and Opa.  He took a nap, wasn't really hungry, but drank enough to stay safely hydrated.  None of the rest of us are feeling any ill effects, but just to prove the cause of what we're dealing with, Luke's... um... other parts of his GI tract are now catching up.  Hence the immature title of this post.

Tuesday, March 12, 2013

Yes, officer...

Luke and Will turned 6 years old this past Monday!  On Saturday afternoon, we had a party at the house.  Several months ago, Luke came home talking about playing "police" with several friends at recess.  I'm always looking for a good party theme, and this seemed like a winner.

The other idea was to do a party at our local fire department - they have picnic shelters that you can use, and as long as there are no fire calls, you're able to tour the building and try out the cab of the ladder truck.  If there is a call, however, the sirens wail and thing turn chaotic as the firemen prepare to leave for the scene... and I didn't think that Will would do well in that potential situation.

So I decided to reach out to our local police department, knowing full well that we wouldn't be able to have the party at the police department, but wondering if they could send an officer over to our house for 15 minutes to show the party attendees their patrol car and talk a little bit about being a police officer.  I know that a lot of people probably wouldn't have randomly reached out to their local police department, but I didn't think I had anything to lose.  All they could say would be no, and then I'd be back to planning a police party at the house with no special guest.

The community outreach contact I spoke to was very nice.  I explained our situation with the party and the noise issue, and more about Luke and Will's health background.  She indicated that they typically do their outreach in more community-facing situations, but was willing to bring my request up with the Chief.  To my surprise, she called back quickly and said they would probably be able to help.  As it turns out, the department does a lot of fundraising and volunteering with the Special Olympics, so this was right up their alley.

I shared my excitement and bewilderment at their agreement with Nate and my dad, but managed to keep it a secret from everyone else - most importantly from Luke and Will!  About a week before the party, the community outreach contact indicated that there would actually be two officers coming, and perhaps the K-9.  Bonus!

To fill the time between when guests arrived and the officers showed up, we had our 14 little boy guests enter the "Police Academy" where they were greeted with a police hat, a shiny new badge and made themselves a nametag.




The new Academy initiates then made their way up the ramp into the house, and stepped immediately into the Booking department.  With the help of our government trained fingerprinting technicians, everyone got their full fingerprints done.



After that, the Academy initiates were free to nosh in the mess hall, work out in the gym, or take a turn in the jail. 


Nate and I watched the clock nervously.  We saw one police cruiser drive by - checking out the house to make sure that the party was still on.  They called and said that they were on their way.  Go time.

We were wearing orange prison jumpsuits.  Nate went out front to meet the police officers.  I ran back to the gym and made a scene - my fellow inmate had escaped and I needed everyone's help to bring him back to the jail! 

The kids ran in a big group around the house looking for Nate.  Luke spotted Nate through the front window, and he and Will led their group of friends back through the garage to the outside.  I ran out the front door and managed to catch this shot - pure bewilderment!


The scene they were witnessing, however, wasn't a single police cruiser.  It wasn't 2 officers and maybe a K-9.   There were 5 police cruisers, 6 officers and a K-9 to meet.  Flashing lights on, officers walking up the driveway in a line.  What. A. Scene.



There were 30 adults at the party - only a few of whom knew what we had up our sleeves.  So they all walked out of the house with looks of disbelief and shock on their faces too.  It was awesome!  I couldn't stop grinning.

The officers immediately started talking to the kids, showing them the inside of the cruisers (the biggest hit amongst kids and dads was the brand new Dodge Charger), how to turn on the lights.  It didn't matter if the kid was in a wheelchair or a walker or talking and walking on their own - the officers made sure that everyone had an opportunity to check things out.







As long as everyone was calm and went over one at a time, we were also able to meet the K-9, Kyra.  She was a beautiful shepherd, and took commands in several languages including German and Czech!


And she even came out to pose for a picture with the whole group.


I have no idea how long they were there.  Time flew by.  Magic.  Smiles.  It certainly was longer than the 15 minutes I had requested, the 15 minutes they could have easily turned down - but easily turned into the most amazing gift we could have imagined!

We waved goodbye to the officers as they drove up the street with the lights and sirens blazing.  I wonder what kind of trouble our neighbors thought we were in!

It was certainly hard to top the visit by the officers, but of course there was cake...


And of course there were buds...




And of course there were twin brothers, to share your most awesome 6th birthday with...


I think next year, we'll pop popcorn and watch a movie for Will and Luke's 7th birthday.  This one might be impossible to top.

Monday, March 4, 2013

The start of birthday season

Most of the NC Slaviks are spring babies - between March and April, we celebrate 4 birthdays.  Nate's the odd Slav out (he's born in July).  So we've begun the beginning of birthday season.  On Sunday March 3, Otis turned 8!

We brought Otis home within a couple of weeks of moving to North Carolina.  He was a cute little brown puppy with a couple of spots of white fur.  He liked to chew on things (like my brand new Lucky jeans).  Aside from a hamster and a couple of goldfish, he was my first pet.  He quickly figured out that he'd stay cool if he laid on the air conditioning grate in the kitchen and that if he snuggled in shortly after doing something bad, he probably wouldn't get in any trouble.




I know it sound cliche, but he is our first kid... a good learning experience.  We used to take him out on every birthday for a treat and a new collar.  He outgrew collars quickly back then.  Nowadays, he's had the same collar for a couple years and it isn't in need of replacement.  But we still take him out for a special treat.

We went back to our local doggie bakery this year.  Otis enjoyed sniffing around, but he was the only dog there this year and once he'd gone through the store, he was ready to sniff somewhere else.




This year's birthday topped last year for Otis because our next stop was the Wake Forest Dog Park.  This also doubled as a playground trip for the youngest three Slavik brothers, so everyone had a good time.  Otis ran around till his heart was content and he was tired of fending off some... agressive... socially inappropriate... dogs.


Otis took a breather while we ate some dinner and gave the boys baths.  Then he perked up again when we sang Happy Birthday to him and gave him his special safe (no chocolate) iced Happy Birthday baked treat.



Happy birthday, big dog!  You're a wonderfully patient, understanding, and most-of-the-time gentle "big brother" to Luke, Will and Matt!  We love you!