Thursday, July 9, 2015

Today I Hugged a Stranger

I hugged a stranger today.  Well, not a complete stranger -- as of a few hours ago, I know her name.  (It's Catherine.)

The first time I met Catherine was 5 months ago, on February 12, and for about half an hour, she was the second most important person in my world.  Catherine and her partner were the EMTs who responded to the 911 call I made at 7:30 that morning, when I awoke to my son having a seizure.  Catherine drove the ambulance as I rode in the front with her, clad in pajamas, flip flops, and a wool trench coat.  Catherine's partner had started an IV on Dane to give him valium to allow his body to relax out of the seizure.  Dane never flinched when the IV was started.  I remember that one moment being more terrifying that waking up to my son seizing in the bed next to me.  What 4 year old doesn't respond when a strange man places him on a stretcher in the back of a strange vehicle and sticks him with a needle?  This was not ok.  Dane was not ok.

We all hoped it was a simple febrile seizure.  While scary, febrile seizures rarely have any lasting effects.  But as we answered the nurse's questions at the hospital, it became clear that Dane's was not a febrile seizure.  He'd had a stomach bug the previous afternoon, but his fever wasn't high enough to have triggered a seizure and the seizure had lasted for much too long to be as simple as that.  He was sent for a CT scan.  We were sickened as we watched the nurse put a diaper on an unresponsive little boy, who somehow didn't look like our Dane at all.  

We released a big breath when Dane's brain was given the all clear, but held the next one right back in as we were told his white count was 43,000 and his glucose was only 12.  The nurse, thinking the glucose must have been a lab error, did a quick finger prick and saw that it was not an error:  Dane's glucose read 10 this time.  He ran out to get the doctor so that they could give Dane some medication to get his blood sugar back up.  (Frame of reference: normal glucose range for a child is 80-100.  Dane was well below the levels for shock)

Jonathan and I, being completely naive to the most basic medical knowledge, found this a relief.  If his low blood sugar caused the seizure, then that seemed easy enough to correct; and he did have a stomach bug and threw up a few times the previous afternoon, so surely that explained the low glucose.  But the nurse and the EMTs that came next to pick him to take him to the local children's hospital kept asking one another, "but why was his glucose in the tens?"  Jonathan and I began to pick up that this wasn't going to be as easy as we'd like.  As the nurse and transporting EMTs began to move Dane from his hospital bed in the ER to another stretcher on another ambulance, he started fighting.  He fought the oxygen tube in his nose, he fought the straps across him in the stretcher, and he even with his eyes closed, he began angrily grunting at anyone who tried to place a mask back on his face.  We were overjoyed at this small sign that things might just be ok.

Dane calmed down a little once he was on the way to the second hospital, but as we came to a stop and began unloading and nurses and doctors came poking and prodding and asking questions, it was clear that he was pissed.  His speech was incredibly slurred, but he said "Mommy" when he saw me and began asking questions about where he was and if he could have some water.  When a nurse instructed him to pee in the bed so that she could collect a urine sample, he looked at her like she'd lost her mind.  I was still horrified at the possibilities, but considering earlier that day I'd had a hard time believing my son was ever going to say my name again, I clung to that small hope that he knew who I was and that his speech, while labored, was intact.

The three of us stayed at the hospital for 2 nights.  Regulating his glucose was the biggest challenge even once he was eating and drinking.  He had two IVs, a heart monitor, blood pressure cuff, temperature pad, and O2 monitors on him at all times.  He had to get his finger pricked every hour at first and then every two hours.  There were countless blood draws, a lumbar puncture (spinal tap), and most importantly, improvements by the hour.  It took over a week for his speech to become completely clear again and his headaches from the seizures and lumbar puncture to ease, but we were on the road to answers.  His problem was definitely an endocrine issue, we just had to figure out what exactly that was.  The endocrinologist recognized that while lots of children are thin, Dane was not the size or height of a child relative to his parents.  (We are not small people.)  Dane had essentially failed all of the cortisol testing she had ordered and received from the first hospital he'd been taken to, and she felt that this was probably the cause of the seizure and his small size, but she had to be sure.

We went back to the hospital a few more times on an outpatient basis for confirmatory labs and a brain MRI on the order of Dane's new endocrinologist.  Ten days after Dane's release from the hospital, his endocrinologist diagnosed him with adrenal insufficiency, in which the adrenal glands do not produce the stress hormone and natural steroid, cortisol.  There is no cure, but treatment is highly effective.  Cortisol is absolutely vital to life and regulates metabolism, glucose, blood pressure, heart rate, inflammatory response, and even memory formation.   

There are a lot of causes for adrenal insufficiency.  Perhaps fortunately, there is no identifiable reason for Dane's adrenal insufficiency.  I'll be honest; it bothers me a lot that we don't have the answer.  He's literally been testing for every single potential cause; but no matter what the cause is, the treatment is the same.  For Dane to live, to be healthy, and to grow and thrive, we give him a steroid three times a day to replace the one his body doesn't make.  His adrenal glands (that were barely functioning before) no longer work at all on their own so it's super important we don't miss a dose.  Dane's dose also has to be adjusted if he gets sick or has physiologic stress.  It's more of an art than a science, and we have to make a lot of after hours phone calls to his endocrinologist to be sure we're doing things the right way, but we're learning.  The diagnosis is life changing, in good and bad ways, but we're changing too.  And I have to constantly remind myself that having an answer isn't always the best outcome.  The goal is a healthy child, and now we have that.  

Dane is growing.  For the first time in his life, he's actually having growth spurts!  He's gained more weight since his seizure (almost 5 months ago) than he did in the previous THREE YEARS.  He wears a medical alert bracelet so that if he is injured, EMTs will know he needs to receive additional steroids.  Another confession:  the bracelet used to bother me.  I considered taking it off for the family pictures we had done this spring, but some sweet friends helped me realize that it's ok.  It's a part of him.  The bracelet will be in vacation photos, first day of Kindergarten photos, graduation photos, and wedding photos... it will be in every part of his life.  Adrenal insufficiency will be a part of him forever.  And that's ok.  If I want to teach him to embrace the differences in others, doesn't it make sense that I'm shouldn't try to hide his differences?

I've wanted to write this post about a hundred times for a hundred reasons.  I even started it a few times.  People we know have asked about his bracelet, and we're trying to educate them as best we can.  We're not hiding it, but it just seemed so frightening to put my family's most terrifying days out into the universe.  Dane's seizure happened only three weeks after the twins were born.  I wasn't ready to share in so many ways.  And I'm still shaken by it all.  I can't see an ambulance without having to talk myself out of a panic.  I want to hug every EMT I see.  

So when I ran into Catherine the EMT today at a restaurant, I was instantly teary-eyed.  I remembered how kind she was to me, how she assured me her partner was "the best with kids." I stood there looking at her in Chick-fil-A and wished for the life of me I could remember this woman's name who I've thought about nearly every day for the past 5 months.  So I asked her name.  And I asked if she remember responding to call in February for a tiny boy having a seizure.  She remembered instantly.  She specifically remembered that his glucose had been 10 and said that she and her partner and the nurse she left us with had wondered what happened to the him all the time.  Her first question was whether Dane had any brain damage from the seizure.  I told her that he doesn't and that I rarely let myself think about what really could have happened that day and what a miracle it is that he didn't suffer any long term effects of the seizure.  

But sometimes, on days when I really need to remember and feel grateful, incredible little things happen to remind me.  So today, I hugged a stranger.  (Don't worry, I asked first)

Photo credit: Melissa Dark @ Greener Grass Handmade

Friday, May 15, 2015

Small Town

Last Saturday, I ran into one of Dane's classmates and his sister and father in the grocery store.  I had never met the father, as I am the "pick up parent" at Dane's preschool and I always see the classmate's mother instead.  I immediately recognized the kid though and introduced myself to the dad.  Dane wasn't with me, but I told him whose mother I was and he remembered Jonathan's name right away.  (This is pretty impressive on its own, as once your child is in daycare, school, soccer, etc., you cease to have a name.  I'm forever and always "Dane's mom.")  We chatted for a few minutes and I told him I'd give his wife my cell number the next afternoon at school so we could get the kids together this summer.  It got me thinking about how I am always surprised at my life.  Always.  Even the little things.

I grew up in a metropolitan area, a county with well over half a million people in it the year I left.  I now live in a county with a population of less than 150,000.  If you had asked me growing up where I would want to make my home, it would have been at least very close to a big city.  That's what I knew.  I went to college not far from where I live now, and when Jonathan and I were making plans for our life together, we immediately started looking back to the area where we were both raised.  Although we never met until college, we grew up in the same county. Jonathan's dad jokes that he sent his kid to college 2 hours south just to meet a girl that lived 10 miles from him.  Anyway, the job offers just weren't there.  Well, they were there, but it was the same pay as he'd been offered to sign on full-time with the job he'd interned at during his final semester before graduation.  It didn't make sense to move back to our hometown for the same pay when the cost of living was so much cheaper where we were.  So we waited, and continued to look for job opportunities near our families, assuming that our residence was just temporary.

But something unexpected happened.  (Doesn't it always?)  We fell in love with our small town!  We loved not having to fight traffic, the friendliness of our new hometown, and it was just close enough to the coast that we could make a day trip of it if we wanted.  We weren't too far from our families either.  If we missed concerts, restaurants, shopping..... well, that was just a day trip away as well.

Don't get me wrong, we don't live in a farm town.  There's a Target and a Publix within a few miles -- otherwise I'd never survive! ;)  But to me, this is a small town.  When your pharmacist offers to bring your prescriptions to the T-ball game (his son just happens to be on the same team), and you can't go to the grocery store without running into your husbands co-workers, and every other Target run involves meeting another parent who just so happens to be shopping for the same three year-old's birthday party that you are..... to me, that's small town living.  And I'm perfectly pleased with it.

What's more small town than holding a baby chicken?

Tuesday, December 10, 2013

Santa's Rules

Every family does things a little differently; Christmas time is no exception!  Some families open all the "non-Santa" gifts on Christmas Eve and open Santa's gifts on Christmas Day.  Some families don't do Santa.  And in some families, Santa leaves the gifts unwrapped under the tree.  This makes me nuts.  I understand why people do it.  This Santa thing is a lot of stinkin' work.  And I can't imagine how my parents did it with three kids, but Santa wrapped every.single.item.  Well, maybe not bikes, but you get the picture.  Most of our Christmas traditions were adopted from my family.  

So here is how we do things at our house:
  • Everyone (even Mom & Dad) gets new pajamas to open and wear on Christmas Eve.  It's something that my grandparents did for my mom and her sister, and it is nice to know that in pictures, no one has a hole in an inappropriate place or mismatched jammies.  (And no, these are not from Santa.)
  • All other gifts are opened on Christmas Day, even non-Santa gifts.
  • Every single present is wrapped.  Separately.  I know.  I'm crazy and I'm ok with it.  Two years ago, I wrapped an Elmo potty seat.  Unboxed.  Yep, I've got skills.
  • Santa has different wrapping paper than Mom & Dad.  In my mind, this makes it all more believable.  Sometimes he has more than one type, but never the same as Mom & Dad's paper. 
  • Santa doesn't do gift tags.  He ain't got time for that.  He just uses a fat black sharpie.  And no "from Santa" on the gifts either.  You just know it's from Santa because a) it wasn't under the tree yesterday and b) the special Santa paper.
What are your Christmas traditions?  Are you making new ones with your family, keeping some old ones, or a little of both?

Wednesday, November 20, 2013

Bring on the Joy

This year, I am welcoming Christmas (as early as retailers, neighbors, friends, and radio stations want to bring it) with open arms.

I understand why people get upset when Christmas music starts and wreaths are hung the day after Halloween, sometimes even earlier.  It already feels like we rush home from work, just in time to throw together a semi-nutritious meal, bathe our kids, and get ready for the next day... to do it all. over. again.  Why rush the holidays too?  I really do get it.  Thanksgiving is my favorite holiday too!  Could there really be a better day than to eat to our hearts' content with the people who mean the most to us without pretense of gifts and price tags?  To find happiness in what we have and what we've been through?  Certainly not.

I was one of those people who absolutely despised hearing or seeing anything Christmas-related before Thanksgiving was officially over, and even preferred it to wait until December came around.  But then, I had a child.  I found out I was pregnant less than two weeks before Thanksgiving in 2009.  I spent the holidays exhausted beyond comprehension, and more joyful than my wildest dreams.  I was amazed at what my body was finally doing, and I spent every waking moment planning and being grateful for that baby.  (You may think I'm exaggerating.  If you do, then you never knew me while I was pregnant.)  He's changed me in a thousand small ways, and a million big ones too.

One of the big ways is that I get to see the holidays through his excited eyes.  And Christmas?  That's just one giant joy-fest to him.  It's not even about the gifts to him.  He's too little to even understand that.  It's the lights, the people, the decorations, the parties, the parades, the Santas, the nativity under the tree!  Last year, "Santa" brought him one thing: an $83 PowerWheel.  Mommy & Daddy got him a pair of shoes (that he desperately needed).  The grandparents even managed to keep it toned down last year.  You know what he thought was the most fun part of Christmas last year?  Staying home all day, eating cinnamon rolls out of a can for breakfast, not changing out of our PJs, and watching Christmas movies.  All Christmas Day means to Dane is being allowed to stay home and play with Mommy & Daddy all day without interruption.

So you know what?  There will come a day when my son doesn't believe in the magic of Christmas.  He'll tell me he wants a gift card so he can "pick out his own clothes" when I ask him what he wants.  And he'll probably tire of hearing Christmas music on November 1.  But for now, he's amazed, and I'm along for the ride.  Let me rephrase:  I get the absolute joy of being along for the ride!  So, yeah, we'll probably put our tree up before Thanksgiving.  We'll probably listen to Christmas music during the Thanksgiving meal.  Does that make Thanksgiving any less special?  Nope.  And I for one hardly think Thanksgiving is offended.  I'm just squeezing every possible moment of joy out of each season.

PS - This does not mean that I have lost my mind enough to join in the Black Friday crowd that starts the evening of Thanksgiving!  :)

Sunday, February 10, 2013

Allergic to Vacation

We just booked our family vacation!  I should be excited.... right?

I'll be honest: as much as we need a vacation, it makes me incredibly anxious to think about the actual trip.  Sure, I'd be crazy not to look forward to sleeping past 4:30am and soaking up some vitamin D while reading some trashy fiction.  But the truth is that Dane seems to be allergic to vacations and holidays.

It all started with our first family vacation in 2011.  Dane developed a 103.7 fever on our third night.  We rushed him to the ER where he promptly vomited all over me at the check-in window.  The doctor ordered a chest x-ray.  He asked again and again if Dane had asthma (because he was on all the breathing treatments and medications any kid with asthma would be) and we replied over and over "he's too young to be diagnosed with asthma; he has allergies."  He had just turned 10 months old the day before.  I wasn't ready for asthma.  I also wasn't ready for pneumonia.  On vacation.  But that's what he had, along with an ear infection and eye infection.  He promised us that Dane would be fine.  They pumped him full of antibiotics, oral steroids, and albuterol.  They sent us "home" with instructions to finish our vacation and come back if his fever returned or his breathing worsened.  They also gave us the name of a local pediatrician we could check in with in a couple days to make sure his lungs sounded alright.  The experience was a pleasant as could be for rushing to the ER with your 10-month old at midnight on vacation.

We tried to hang in there for a day, but being on vacation made things seem worse.  I guess it was like going on a Ben & Jerry's tour if you're lactose intolerant.  He was miserable, we were as exhausted as we had been when he was a newborn, and we were at the beach.  After a day of tears, I told Jonathan I wanted to go home.  We packed up our car and headed for our real home at 10pm.  It was a miserable trip home.  Dane couldn't breathe well in his car seat, Jonathan snored, and I almost hit two deer standing in the road.  I was heartbroken that the family vacation I had dreamed about for years had hit such a wall.  Even so, we were happy to be home.

Here's a few of the other reasons I tend to flip out a little over planning a vacation, or any celebration for that matter:

  • November 2010 (Nana & Papa's first visit) - rotavirus
  • Thanksgiving weekend 2011 - ear infection and asthma trouble that required oral steroids
  • Christmas Day 2011 (2am)- ruptured ear drum/ear infection
  • February 2012 (BFF Owen's first birthday party) - pink eye and ear infection
  • Thanksgiving weekend 2012 - asthma trouble that required oral steroids
  • Christmas 2012 - on antibiotics for ear infection
  • Disney trip 2012 - the norovirus "Sydney" that's hit so much of the nation this winter
I'm a little skittish about vacations and holidays, as you can see.  Thankfully, this year, we are going into it knowing a few things that we didn't when we embarked on our first family vacation:
  • Dane's does have asthma, so we come prepared.  That means nebulizer, nebulizer meds, and oral steroids.  A little breathing trouble no longer scares us as badly because we know what to do now.
  • Our relationship with our beautiful, fantastic, intelligent, selfless pediatrician (can you tell we're smitten?) has grown to the point where we have her cell number for the really scary situations.
  • We know that the hospital at our fave vacation location is top-notch and we wouldn't hesitate to make a visit if it was necessary.
Even so, do us a favor and send happy vibes and prayers our way in May!

Thursday, January 17, 2013

"That" Mom

It's official.  I'm that annoying mom.  I probably have been for a while, but a recent online purchase that was delivered to the house today confirms it (for me at least).


I ordered a pediatric otoscope.  That's right, a device to look in my kid's ear when I think he might have an ear infection.  Let's face it, I dropped the ball bigtime last month and I don't want it to happen again.  One of the pediatricians in the practice suggested a handy little thing called a "middle ear monitor."  While I could certainly see the usefulness of something like this, it's big claim is that it can give you an idea of the likelihood of there being fluid in your child's ear.  Well, Dane practically always has fluid in his ear because he has allergies.  What I really need to know is if I need to take him to the doctor to get a round of antibiotics.  I certainly don't want to take him if he's not in need of antibiotics, because all parents know that even if your child doesn't need them, he probably will after a visit there!  Exposing an asthmatic little one to more plague than absolutely necessary isn't on the top of my list.  And because he never runs a fever, acts strangely, or has a change in appetite when he gets an ear infection, someone has got to look in those ears!

Enter the "pocket" otoscope.  (I find the term "pocket" hilarious because as crazy as I might be, I am not toting that around in my pocket all day.)  I've debated the purchase for quite some time, but the recent congestion in our household finally sealed the deal.  We'll see how it goes.  I figure for the cost of one co-pay to the pediatrician, it's worth a little peace of mind.  And most of you know I love disgusting medical stuff anyway so it's right up my alley.

Tuesday, January 8, 2013

Like Mother Like Son

I belch like a man.  I don't do it in public, but anyone who knows me has probably heard it and wished they hadn't.  My mom always says "I thought I raised a lady" every time she hears it and my dad says something along the lines of "righteous".  I'm proud and ashamed at the same time.  Maybe a better way to explain it is that I'm ashamed that I'm so proud of this ability.

I taught Dane to stick green beans in his nose one night at dinner.  Not exactly just for the heck of it, but it did get him to eat his veggies that night.

I recently told Dane to say "Daddy, suck it" and he willingly repeated it.  Jonathan's reaction was worth the fact that we had to send Mommy to time out to show Dane that wasn't appropriate language.

The point of all this is to tell you that Jonathan is terrified that no one is going to believe that when Dane does this crap at school, it was Mommy who taught him.  So I guess this is me letting you off the hook, baby.  It's out there in the world.  When he gets sent to the principal's office for teaching the other kids how to burp, they'll know it's my fault.

In related news, Dane called the cat a "turd" the other night.  I wonder where he heard that.