i carry your heart with me (I carry it in my heart)

Beautiful words by EE Cummings. 

And speaking of hearts....mine is all better.  I had AV Nodal Reentrant Tachycardia. Otherwise known as a really fast heart rate.  Think of the feeling you get during the long ride up the steep hill of a roller coaster. Click. Click. Click. The noise the chain makes as it pulls your little car up and up and up. Your hands are sweaty, you feel clammy. Then, the almost completely still millisecond pause of anticipation before careening down that hill leaving your stomach in your throat.  Only you aren't on a roller coaster. And it happens at the most inopportune moments. That's how I was beginning to feel. A lot. A lot more than I wanted to acknowledge because, let's face it, I simply don't have time for that shit. And did I mention I am not a fan of roller coasters?   And the medicine I was taking made me feel funky. Like in slow motion. Think Keanu Reeves in The Matrix scene where he bends all around the bullet and it's weird and jumpy around him. And I don't like to take medicine.  At least not the kind that makes me feel drunk and high and like I'm staggering. Don't get me wrong-I don't mind feeling drunk and high and staggering, just not at work. It was getting difficult to tell the difference between me and my patients. 

So I went for the quick and dirty, 95% fix rate of a cardiac ablation.  So into the cath lab, get the good drugs, get three catheters in my left groin, two in my right, some rapid rhythm induction, a little cauterizing and wham, bam, I'm awake in the CCDU with nothing more than an ugly bruise on my left thigh.  I have to say I was a little disappointed the CCDU did not have massages and Chinese take-out and a champagne fountain we all thought it did due to the super-strict, members-only guidelines it used to have for admission. 

For my non-NKCH folks the CCDU is our newest unit known as the Cardiac Clinical Decision Unit. And clearly they relented on their guidelines if they let me in there. 

They do have pretty nice rooms.  Would've really loved some Chinese food though. 

Anywho-all good and back to work on Saturday. 

i am never without it (anywhere i go, you go, my dear  

And today my heart is with all our Rare friends on Rare Disease Day.   

A rare disease is classified as a 'disease or disorder affecting less than 200,000 Americans at any one time.'

Ethan's chromosomal anomaly 18q- occurs in 1 in 40,000 births and with only about 1000 people affected worldwide, it definitely puts the bald kid in that category. 

Most rare diseases are thought to be from faulty genes. So thanks to our bad genes-we have been blessed with the most wonderful, amazing little guy. And with his funky genes we were thrust into a world where we have been even more blessed to get to know some other pretty amazing and rare kiddos and their families. 

So I wear my 'jeans for genes' today because I ❤️ someone rare.  

Ethan, we love you and wouldn't trade you for any fancy schmancy designer genes in the world. 

i fear no fate (for you are my fate, you sweet) 

i want no world (for you are my world, my true)

and it's you for whatever a moon has always meant 

and whatever a sun will always sing is you

here is the deepest secret nobody knows

 (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life;which grows higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart 

i carry your heart (i carry it in my heart)

Check out the global genes project. 

Happy February 14!

Of course it's Valentine's Day, and everyone is getting huge, expensive flower arrangements from their  significant others professing their love is greater on this day more than any other.  Sometimes though I think it's just so your wife, girlfriends, partner, sig other, etc.,  gets bragging rights to what an awesome love they have.  Brian and I are not "flowers on Valentine's Day" kind of people. I'm not sure I have ever gotten flowers from him on any Valentine's Day.  And I'm ok with that.   Usually I get a really nice handwritten note from him, of which I've saved every one. Notes don't wilt and die, or get eaten like that big box of chocolates will. 

But I have really enjoyed seeing all the super creative Valentine boxes on FB-you can tell last week all the kids were out of school and parents needed something to do to keep them entertained!  

And I had a blast making the bald kid's minion valentines. 

And I got my valentine present earlier this week anyway.....

Yep, the big ole Suburban went bye-bye.  Last week the interior electronics all went out and only a potion of it was covered under warranty because we bought it used. Then we found out it may have been in a wreck that was never claimed because our one year old tires had worn funky on one side, and the only explanation was that the frame is bent somehow.  Could be why the alignment never held very long?!?!   I had a Honda Odyssey mini-van before and I loved it. I just didn't want to be the 'mini-van mom' since my kids were getting older, but alas, I will always have one little one with me, so mini-van it is!  Besides, this thing rocks!  It has a back up camera that has three different views, and something Kim Gunther needs; a camera on the right passenger mirror, so when turning the right blinker on, it shows everything in your right side blind spot!!  Oh, and it also has lane drift warning, so if I start to drift into another lane and I'm not signaling with the intent to get over, it will flash and beep an alarm at me. 

Thank you honey!  

Looking for a Honda?  Head to Tiffany Springs Honda and ask for Mr Bill Robinson-the nicest man ever!  Brian went to college with the dealership owner Bobby and his wife, and he hooked us up with Mr Bill.   A very painless car buying experience!  Did I mention we got Hailey a new civic too?  Happy Valentine's Day to her too!  And Easter, and birthday and Christmas and  graduation, and etc, etc. 

February 14th also marks the end of Congenital Heart Defects Awareness week. 

  

1 in 100 kids will be born with a CHD, and our little bald guy was one of them. This journey has been tough, sad, happy, joyous, scary and rewarding all wrapped up into one.  We have seen other heart warriors lose their battle, and know too many parents who no longer have their hero on this earth with them.  We wake each day knowing it could be our last with Ethan, and are so thankful for the medical advancements that have allowed us to keep him here with us as long as we have.  Last year alone, the miracle of Boston Children's Hospital Heart Center being able to get a new valve in him without using bypass and an open heart is because of the advancements in the field of CHD's.  I only wish there was a fix for all our babies broken hearts and no parents or siblings or grandparents ever had to say goodbye to their heart warrior.  Through continued awareness this is possible! 

In honor of all our heart super heroes!

And my fellow super heart mom friends!

And finally, February 14 is my Cancerversary!  

Yep, 2 years ago it was confirmed I would be fighting breast cancer.  And though my fight will never truly be over, I am a survivor!  I am forever grateful for my family and friends and the kindness of complete strangers who helped me through my journey.  

40,000 women will die from Breast Cancer this year and every year-with awareness we can change that number.  Don't ignore symptoms, get your mammograms and encourage your loved ones to do the same.  My routine, screening mammogram saved my life!  

In honor of my Grandma Flora-I will never quit!

And the cool tattoo I'm thinking about once I'm all done with reconstruction-only pink ribbons where the red stars are. 

From flowers and chocolate hearts to real hearts and boobs, 

February 14 is a pretty special day.  

I guess I am a 'flowers on Valentine's Day' kinda girl after all; as soon as I finished this post I walked into the kitchen and saw this gorgeous potted flower from my amazing kiddos!   

And all I have to do is put 6 ice cubes in the dirt once a week to keep this beautiful flower alive!! 

Snow day FREE time

With the last two snow days thanks to Mother Nature, I've had lots of free time. 

A lot of it was spent snuggling with the teens and the bald kid watching marathons of Modern Family, Dexter, NCIS, Law & Order while munching away on Fritos and bean dip, Funyuns, gummy bears and sipping my all time fave drink Coca-Cola.  And I love me some Coke.  

Speaking of Coca-Cola......

We rarely had soda in my house as a child, but I clearly remember those commercials. 

"I'd like to teach the world to sing, in perfect harmony."

"I'd like to buy the world a Coke, and keep it company"

And the camera panned from one person to another, of different races, ethnicities and all holding that glass Coke bottle with the wording in foreign languages. 

Hmmmm....that commercial was from 1971. The year I was born. 

As I mentioned, my snow days have allowed me some free time, time to do some FB quizzes to figure out which 80's female singer I am (Alanis Morisette), my IQ (140),  where I should be living (Portland).  

I also had time to take advantage of letting FB make my 62 second video of my most popular posts and photos-I was pretty impressed with that one-and read many people's responses to Coke's latest commercial aired during the Super Bowl. 

Wow.  That one minute commercial really upset some peeps. 

 If you haven't seen the commercial-go to You Tube and watch it. 

The song "America The Beautiful" is being sang by a multitude of folks. Of different races and ethnicities and keeping with current times; sexual orientation.  Apparently the fact that some of the verses of this sing are sang in a foreign language has been very upsetting to some people.  Oh, that and the gay couple sharing a Coke and a happy moment with each other and their child. 

Now, for what it's worth, here's my two cents on all this hoopla. 

I love the commercial. 

I loved it when I saw it. 

I love it even more now. 

It brought tears to my eyes. 

I think it is respectful and beautiful. 

The United States is the melting pot of people. Maybe being in the Midwest, most of us don't see that as clearly as our friends in larger cities on, say, the East Coast.  

But remember, we are ALL foreigners on this great land unless you are Native American Indian, of which I am a small percentage. I am also of English descent. Yep, England. The country across the big ocean from which our main language originated. 

People come to the United States for a better life. For themselves, for their families, for their children. For a chance to be educated, be free of religious and political persecution. And I'm pretty sure that not one of you reading my blog would rather live in a country with subpar healthcare and education. Where clean water isn't readily and freely pouring from a tap. Where your daughter would not be able to go to school and have the same advantages as your sons. Where your sons would be enlisted in the army as early as age 16. Where some people live without heating and air conditioning, electricity and the internet??

We have it pretty darn good here, and if it's what I want for my family, why is it wrong for another Mother or Father to want the same thing for their family?  

What's that old saying "Imitation is the sincerest form of flattery"???

Some have said that American soldiers don't fight for this country to hear that song in a foreign language. And I adamantly disagree. I come from a long line of veterans; Grandfather, Father, 

2 brothers, sister, sister-In-law, nephew, cousin, great Uncle and probably more I don't even know about. Add to that many, many military friends. And I could safely bet that each and every one of them fights for this country for that very reason. 

They protect the freedom of each and every American to say, sing, read or preach whatever song, verse, bible, or prayer they want to without fear of being punished.  They don't just fight for the rights of the Anglo-white-Americans.  They are putting their lives on the line for all US Citizens-white, black, brown, yellow, Catholic, Jewish, Muslim, Buddhist, Atheist, gay, straight, bi, and transgender.   And I would venture to say with the state of our education system, many of those people bitching, and their children, don't even know all the words to that beautiful song in English, let alone another language. 

And about the unofficial anthem of the US....did you bigots out there know that it was penned by Katharine Lee Bates, a Wellesley college graduate and professor who, in the late 1800's/early 1900's, had a 25 year intimate relationship with a woman???  Yep, she was a lesbian. *gasp*.   So the people mad about the gay couple in the commercial whom they feel are tarnishing the premise behind that song-gotcha!!  Tell me again how gay marriage will be the downfall of society as you defend a poem written by a lesbian?  I'm happy to hear your arguments. 

Oh, and that song (originally written as a poem) was written after she took a wagon ride, mule ride and grueling hike up Pike's Peak to 14,000 feet and was in awe of the beauty she was witness to. 

Yep, beautiful Colorado. Childhood home of my mother. Home of some of my favorite people. And to this day, a place that will take your breath away with its beauty. If you've never visited, it needs to be on your bucket list. The inspiration behind our unofficial national anthem.  But I bet you've been to Branson. Or Las Vegas. 

I know this post will probably piss some of my readers off, and may even cause you to stop reading my blog. But you know what?  Because you are an American citizen, that's your right. And a right defended by a whole lot of people who may or may not agree with you. 

That's what I find beautiful about America. 

Irony? Or just our luck?

Funny, last night I post about February being a month of hearts; the chocolate kind and the broken kind. Aaaannnddd....today at work I end up in the ER because I started feeling lightheaded, diaphoretic, nauseated and my heart was racing so fast I couldn't count it myself.    Hooked up to a monitor I was tachycardiac at 212 bpm and as high as 232. 

Into the big trauma room I go.  IV started, blood pressure normal at 139/89 but couldn't get a good EKG because I was shaking. Finally, third times's a charm,  EKG shows SVT or supra ventricular tachycardia. Fix?  Ativan, Zofran, fluids and Adenosine.  Dr Maz tried a couple of non-pharmalogical interventions while Christy and Sheila-awesome RNs-were getting me ready if they didn't work. 

A little carotid massage and bearing down did bring my rate down to 140's, but not good enough. 

Out with the good stuff.  The Adenosine is administered by IV in a rapid push, and when it hits you, you feel it!  It takes your breath away and kind of 'resets' the SVT arrhythmia that was going on. I closed my eyes and tried to relax and take in a deep breath-and weirdly enough, with my eyes closed, everything inside my head was a red color.  Once the initial shock passed, and I no longer felt like my stomach was in my throat, I felt much better. My heart rate came down to low 100's, so Maz gave me a small dose of a beta blocker, then another small dose to help keep it down. It was in the high 80's, low 90's when I started feeling normal again. 

Talked to Dr Gimple, the cardiologist, and he feels with my family history of electrical heart issues; Ethan born with WPW-Wolff Parkinson White Syndrome and my younger sister Kate diagnosed with WPW in her late 20's, that my issues are simply 'in my genetics'.   And since this is the third incident of tachycardia with me in the last 3 years, we clearly need to do some further testing.  I also need to see an EP guy that specializes in the electrical workings of the heart.  

So, for today I will be resting on the couch watching some football, wearing my 24 hour holter monitor. Dr Gimple started me on a calcium channel blocker called Cardizem and once I turn in the holter tomorrow, I will make a follow up to see him or Dr Rigden later this week. 

                                            

Look familiar???

And, once again, how is it possible all this crazy shit happens to our family???

Hmmm, my husband is ready to put me out to pasture at this point. 

Heart disease is nothing to mess around with, not just in our little warriors, but adults too. 

Isn't it ironic??  

But if cancer didn't kill me, I'm not gonna let this either!