Pick a Cardiologist’s Brain About Cardiomyopathy

First of all, I would like to reassure anyone who might be wondering that the title of today’s post is not an announcement that Superkid has added cardiomyopathy to her list of health concerns.  Thank goodness.  Sorry if I caused any concern!  But cardiomyopathy is an important term to know, because it is currently the leading cause for pediatric heart transplants.  Here’s a definition of cardiomyopathy, provided by Cincinnati Children’s Hospital:

Cardiomyopathies are diseases of the heart muscle, also known as the myocardium, in which the actual muscle cells and surrounding tissues are sick.

Cardiomyopathies can be primary, meaning the sickness predominantly involves the heart. They can also be secondary, meaning the sickness is a result of another disease or toxin and may also affect many organ systems within the body, including the heart. Patients with cardiomyopathy will most commonly have a heart with normal anatomy.

If you’d like to learn more about cardiomyopathy, and especially if you’d like an opportunity to ask experienced medical professionals questions about it, then you are invited to come along with me today to partcipate in a LIVE CHAT session with a cardiologist from Cincinnati Children’s Hospital.  The chat begins at 7 P.M. EST, and there are still spots available.  You can RSVP HERE.  Cincinnati Children’s is consistently rated among the top 10 for heart care in the U.S., so it’s impressive that we heart families have the opportunity to pick the brains of some of the world’s best during this chat session.

When It Comes to Miracles, Location Doesn’t Matter

If you happen to follow my other blog, you’ve already heard this story.  But, since it has to do with all kinds of things that I like to focus on within this blog (family, miracles, hospitalizations, etc.), I thought I’d share it here, too.  

A Moving Story

Earlier this week/month (I seem to be losing track of time this summer) I promised more stories about our cross country move.  Well, I already told you that the final preparations were up to me and that we made a stop in Moab, Utah for some quick, quality time with our extended family, and that we arrived safely in our new location.

What I haven’t told you is everything in-between.  I’ll spare you most of the boring details, but I have compiled a list of the  unpictured highlights.  (Unpictured because I was so tired I couldn’t even pick up my camera for the first three days after the moving truck left.)

  • Not knowing when the moving truck was going to be able to deliver our household goods and realizing that our things could possibly be in storage indefinitely, I overestimated the capacity of our Toyota Sienna and small trailer and kept WAY TOO MANY THINGS out of the moving truck.  Thinking I could fit them all into our trailer, I had boxes of food and spices from our kitchen, cleaning supplies, tons of clothing and blankets, and all kinds of other things I didn’t want to part with.  In the end, most of it didn’t fit, and we recreated a scene from our pioneer history by handing out all kinds of freebies to our Indiana neighbors and friends that were there to see us off.
  • Day 1 of driving ended in Kansas City.  A huge thunderstorm/tornado warning chased us into our hotel room, a fitting send-off to our life in the Midwest.  We watched buckets of water pour from the sky.  Ironically, that may have been the last real rainstorm the Midwest has seen since we left.  My apologies, Middle America, for starting your drought.  If you’d like to pay for our family to come back for a few days so you can have some rain and a few tornados, we will oblige.  We like you!
  • Day 2 of driving took us across Kansas and most of Colorado.  Thus fulfilling my vow to “never drive across Kansas again unless it is in a moving truck.”  Well, sort of fulfilling it–I was in a Toyota Sienna towing a trailer.
  • Day 3 took us to the family reunion in Moab, Utah.  After leaving the gorgeous mountains and canyons of Western Colorado, we spent the remainder of the drive peering through the haze of a dust storm.  Seriously.

Like I said, we enjoyed a brief reunion in Moab with most of Bionic Man’s siblings and parents.  The dust storm subsided soon after we arrived, so we were ready to do some sightseeing.  Trouble was, everyone was hungry.  Well, in the aftermath of a dust storm, where do you go to feed a hungry group of 21+ people of varying ages, palates, and budgets in Moab, Utah?  Considering what happened later, I think it is best that I don’t name names.  But I will give you a big hint:

Now, I’m not being a food snob, here.  But I am going to say that there are certain signs the Bionic Man and I have learned to watch for before sitting down at a restaurant that help us decide whether or not we should actually eat there.  The signs weren’t good for this restaurant.  The signs were very bad.  But we were with a big group, we were tired, and we decided not to rock the boat.  I didn’t let my children order anything that would be raw–including fruits or vegetables.  Unfortunately, I did not pay attention to what my husband ordered.

And so it was, after a 24 hour period that included a gorgeous morning hike to the famed Delicate Arch and a last minute decision to drive from Moab to Northern California on a very long stretch of road dubbed, “America’s Loneliest Highway,” that the Bionic Man began to experience some stomach pain.  We were almost to Delta, Utah–one of the towns you likely have never heard of that exists mainly to provide a gas station for The Loneliest Road in America–when the first wave of nausea hit my husband.  He spent an hour in a McDonald’s restroom and declared he’d “gotten it all out of my system” and we headed down the road again, making it to a hotel in the very small town of Ely, Nevada for the night.  But it wasn’t out of his system…and instead of driving to our final destination the next morning, I was driving my very, very ill husband to the pint-sized William B. Ririe Hospital in Ely, Nevada.

Now, I’m no stranger to emergency rooms and hospitalizations.  I’m a veteran when it comes to bedside support.  I’ve learned over the years to be calm and unflappable in the face of catastrophe.  But, oh boy, did I ever feel sorry for my poor husband!  And man alive, was I ever worried about getting medical care from a hospital in the armpit of America.  (We’ve gotten used to some world-class care, thanks to our beloved Riley Hospital.)  And don’t even get me started about what a horrible feeling it was to drive away from THE HOTEL MY CHILDREN WERE STILL IN with their ashen-faced daddy crying like a baby.  (That’s the daddy who was crying in pain, not the mommy, even though she might have felt like it.)

But, you know what?  I was reminded of something that I’ve learned before:  miracles can happen anywhere (even at hospitals that are smaller than our former pediatrician’s office).  The doctors and nurses we worked with were so caring and professional.  Even if it was the first time I’ve ever seen a nurse in cowboy boots, they had the pain medication and IVs that Bionic Man desperately needed.  They quickly located two members of our church who came and gave Bionic Man a blessing of healing, which was a great comfort.  The hotel staff at the Ely La Quinta Inn were so unbelievably caring and helpful, reassuring me that they would do everything they could for our family while I was at the hospital.  Later in the day, when Bionic Man was stable and I brought my children to the park outside the hospital to play, another woman heard me updating family members on my cell phone and came over and asked how she could help.  People in Ely were just so nice to us, and I was so impressed by their kindness to strangers.

Ironically, while Bionic Man was in the hospital recovering from severe dehydration and possible pancreatitis due to food born bacteria (the final diagnosis), the children and I ate the best meals we’d had THE ENTIRE TRIP right there in Ely, Nevada.  The french dip sandwiches made with genuine fire roasted beef were insane at The Silver State Diner, where we had an amazing lunch.

And the only other non-casino restaurant in town, Twin Wok, served the best Chinese meal I’ve had since visiting Chinatown in Los Angelos.  In Ely, Nevada.  Who knew it was such a dining destination?

Thankfully, the Bionic Man made a quick recovery, and after an overnight stay at William B. Ririe, we finished the last leg of our cross-country move.  With the GPS informing us that we had 1 hour, 48 minutes to our destination, we  crested a hill to see this

and it finally hit me:  I get to live here.  Well, not there exactly, but within driving distance.  And suddenly all the stress and worry and crazy cleaning and giving away my spices and even food poisoning seemed worthwhile, if it had brought us to mountains and lakes and incredible vistas that were just a short drive away.  We’ve dreamed of being able to take our children hiking and camping and biking in places like this–not just when we’re on big vacations, but whenever we feel like it.   With the asterisked side note to our dream that it couldn’t be too far from a children’s hospital that would have all the services Superkid needs.  And that dream finally came true.

So, over the course of the next few months when you read me whining about California real estate and how hard it is to downsize and all that, just remind me that I’m living the dream, will ya’?  And that miracles can…and do…happen anywhere.

The End

 And one more thing I have to add:  as much as I hated seeing Bionic Man suffer (he was so pitiful, poor man), it truly was a blessing that he was the only member of the family to get food poisoning.  It certainly would not have been fun for anyone else, but it really had to be him.  Bionic Man doesn’t share my enthusiasm for participating in hospital care, so it’s better that I wasn’t the one needing ER services.  It would have been horrible for any of the children to be as sick as their daddy was, but it could have been absolutely catastrophic for Superkid to have been struck with this food born illness.  Due to her metabolic disorder, Superkid is extremely sensitive to dehydration.  Additionally, we’ve recently learned that she has difficulty metabolizing the type of IV fluids routinely used in hospital settings.  It is unlikely such a small medical facility would have had the specialized fluids she needs on hand.  Treating her for this type of illness would have surely required an emergency medical flight to a larger hospital.  It just makes me shiver to think of everything that could have gone wrong.  I’m so thankful she (and the other children) were spared all of that.  Looks like Bionic Man took one for the team, this time.  Good thing he really is Bionic–he bounced back to full health almost immediately.

Adventures with Superkid

Here’s the report on yesterday’s trip to the children’s hospital:  Superkid was a superstar!

If I haven’t told you before, you need to know that Superkid considers all trips to our children’s hospital–for any reason–to be primarily a social outing.  Any procedure or examination that the trip entails is secondary to the opportunities for social networking and the gathering of prizes, as far as Superkid is concerned.  A true performance artist, Superkid also feels that every person encountered at the hospital is a fresh audience ready to be delighted with her medical history, family history, favorite songs, new vocabularly words, and dance moves.

I don’t know where she gets that. [Read more…]

Update to the Last Post

(Read the last post HERE….sorry if it is TMI.)  (For my sisters and mother who don’t speak text, that’s Too Much Information.)

Here’s the update:

I’m feeling lots better.  Antibiotics work.  I’m glad to be back in the land of the living.

Just in time to get the news that Superkid’s doctors have decided to try cauterizing her nose THIS WEEK.  (You can read why this is a big deal HERE.)  They think they can do it without changing her blood thinning medication, which means day surgery as opposed to two weeks spent at the Heart Center.  (Hopefully.)  Yay!  That is so worth a try if it cuts down on nosebleeds.

She will be having the minor procedure done in a regular operating room, where more equipment (and people) are available if anything goes wrong.  (We hope it won’t.)  We have been told to expect to be at the hospital for a matter of hours, but I am packing a toothbrush and contact lens solution, just in case.  (I’ve learned from experience.)

Please keep Superkid in your thoughts and prayers.  No matter how much fun she thinks our wonderful children’s hospital is, I’m not a fan of hospital stays.  And, if you have a burning desire to help, volunteer to be a guest blogger this week.  Yes, you!  Come tell about your trip to Holland, latest parenting adventure, or how you are getting ready for fall at your house.  It will be fun!  And so much more enjoyable than casserole, seriously.

Contact me about guest blogging here:  atriptoholland (at) gmail (dot) net

When Good Organs Go Bad

Hello, friends!  First off, if the title of this post has you worried, it is NOT about Superkid.  No, no, the organ I’m referring to is far more dispensable than the heart.   {Sigh of relief.}

I haven’t been writing much this week, and I wish I could say it’s because I’ve been busy painting.  Or because Bionic Man and I jetted off to Hawaii.  Or because I have been working hard outside in the yard.

None of the above, unfortunately.  Something much less fun has been keeping me away from the ole’ blog.

Fact is, it has taken three trips to three different doctors, an overnight stay in the ER, various lab tests, and a CT scan to find out that my uterus is trying to kill me. [Read more…]

The Cure for the Uncommon Nosebleed

This is a totally gross topic.  My apologies.  But the reality at our house is that we are way, way too familiar with bleeding through the nose, thanks to Superkid.

Superkid tends to have a lot of nosebleeds.  Part of this is due to the fact that she has to take a blood-thinning medication to protect her artificial heart valve from blood clots.  And part of it is due to the fact that she has a small artery a little too close to the surface of her left nostril.  (For which there isn’t a simple fix, due to Superkid’s other medical conditions.)

The combination isn’t exactly pretty–especially when her medication is at therapeutic levels.  (Read: when her blood is as thin as her cardiologists want it to be.)  Believe you me, I have the stained sheets, towels, t-shirts, and carpet to prove that.  We have seen some pretty dreadful nosebleeds.  One of Superkid’s worst lasted for 3+ hours, and dripped like a faucet the entire time.  Naturally, that one occurred at 10 o’clock at night while Bionic Man was out of town on business, and involved a late-night trek to the children’s hospital ER with Superkid, Lily, and Lily’s oxygen tank in tow.  The nosebleed stopped as soon as we walked into the ER.  I am not kidding.

And, up until recently, that was the best cure for nosebleeds we knew.  Seriously, we’ve had three nosebleeds worthy of trips to the ER, and all of them stopped upon entry. Kind of an expensive and time-consuming cure, don’t you think? [Read more…]

Truth Stranger than Fiction

In the early hours of this morning, Bionic Man nudged me awake and told me, “I just had the weirdest dream.”  Then he told me all about it.  I agreed.  It was weird.

Only Bionic Man can come close to outdreaming me when it comes to weird dreams.  It’s one of the reasons I married him.  But this morning, I was not about to be outdreamed.

“I had a really weird dream, too,” I confessed.   [Read more…]

Healthy Superkid Update

I have not found much time for blogging this last week, and I’m afraid that’s going to be the case until sometime next week.  I somehow think I’m going to have all this extra time when school starts, but I think the reality is that I spend the morning recovering from getting everyone out the door, and the afternoon gearing up for everyone coming back through the door.  Once they arrive, then the action and noise involved makes up tenfold for what wasn’t there during the day.  School totally wears Hunter the Dog and I out, I’ll tell you that much.

Anywho, it’s late, and I’ve got lots to do tomorrow, so this has to be quick.  I just wanted to share the good news that Superkid’s cardiology appointment last week went really, really well.  It was her first cardiology visit in over a year, and her heart looked so good that they told us not to come back again for another year!  That, my friends, is quite a record for us. [Read more…]

Every Heart Has a Story Event

Today I sent my three children off to school.  Hunter the dog and I waved good bye as the school bus drove away (well, I waved, and Hunter looked downtrodden–he’s not a fan of those big yellow monsters that take his peeps away) and then we went for a run.  I took a leisurely shower, after which I let my good friend Nicole in the house.  She’d just dropped off her youngest at kindergarten, and needed some chat therapy.  (I love it when I can provide a service and do my own dishes at the same time.)  And now I’m sitting down to the computer, about to update someone else’s blog widgets and write some articles and be a productive, wage-earning member of society.

I know, my life is just one thrill after another.  But I like it that way–I’ve come to appreciate the magic of ordinary days.

Every once in a while I like to take a break from the glue guns and spray paint and the “fluff” of my life that I generally write about here, and revisit the topics that started my blog.   Last year, I wrote something to explain that, and I want to re-post part of that blog entry, today. [Read more…]