Struggling

I'm at a funky place in my life and in my mind right now. 

Actually, I feel like I have been for a while. 

Like, months worth of a while.  

I can't put my finger on it, can't describe it in easy to understand words, can't quantify it or compare it to any other 'place' I've been in my life. 

I'm not unhappy. 

I'm not angry. 

Im not sad. 

I'm struggling. 

I don't feel like I'm where I'm supposed to be at 43 years of age. I don't feel like I've missed out on anything; I have a wonderful husband, great kids, a job, a house and car. Food and money to provide for my family. But it just feels like it's not enough. 

And I don't mean financially or tangibly.  And I feel like writing that makes me sound ungrateful for the life I have. 

I sometimes find myself looking at people, people I know well and feeling like I don't really know them that well at all. And in turn, they don't know me. 

I'm quite vocal with my feelings usually, and most people don't have to question where they stand with me. But as I've gotten older, I've realized that hasn't always served me well in life. People don't really want honesty. They don't want problems and issues pointed out. They don't want solutions. They want to wallow in dead-end jobs or self-pity.   And I'm happy to freely offer advice, usually solicited, with no intentions of hurting someone's feelings. But I'm becoming aware that even though someone may ask, they don't really want the truth.  And in the end, I'm the bitch. I do end up hurting someone's feelings. 

But I don't get to have feelings. And they sure don't get to be hurt. And if they are, I don't get to make a big deal out of it or I'm the bad person. 

I guess my biggest dilemma is I feel like I'm a crossroads in my life where I have to decide if I want to become the 'yes' girl. 

The 'keep my mouth shut and nod and smile' girl. 

The 'ignore what's right' girl. 

The 'don't rock the boat' girl. 

And stop 'standing on my principle' kind of girl. 

Most of you reading this, and know me even slightly, know that is really hard for me to do. But I've found myself doing some of these things lately. And I feel like I've shortchanged myself for doing so. 

And in doing this, I've conformed to what someone else; society, people, co-workers, family and friends, think I should be/do/say. 

That is what I'm struggling with. 

Do I nod and smile and be who someone else thinks I should be so as not to rock the boat? 

Or do I call out the bullshit and be that girl again?

Do I sacrifice who I am?  

Do I apologize for being good at my job, better than some even?

Do I apologize for being smart?  Witty? Funny? A bitch? 

Hmmmm. Hard call. Easy for some. Not for me. 

So, in reality, I guess I am unhappy, angry and sad in a way. 

I carry tons of guilt with me already. Shit, I was raised Catholic. We've been served up guilt on a communion wafer since 3rd grade. 

I'm a mother. A working, tired, sometimes lazy; feed my kids out so I don't have to cook, throw dirty shirt in the dryer with a scented fabric sheet to freshen it up because I didn't make it to that load of laundry yet, kind of guilt Mother. 

I'm a wife. A don't pay enough attention to, compliment enough, yell at when I'm mad and take stuff out on a doting husband kind of wife. 

I'm a special-needs Mom. Ahhh, I can't even begin to describe the guilt. Do I pay enough attention to my other kids, husband, extended family and friends guilt.  The self-pity for the tough days guilt. The jealousy watching other 10 year olds do the things my son never will guilt. And the wishing things were different guilt. 

I'm a survivor. Fuck. Need I say more?  Happy not to still be sick guilt. That's a doozy. 

But I guess I'm ok with all that guilt. I kind of feel like most everyone reading this can associate with at least one of those types of guilt. And you're probably nodding right now. 

So I really can't figure out why I am feeling guilt over being me. 

That's what I'm struggling with. 

Is it because I'm afraid people don't really know the real me?  

And if they did, would they like me? 

Or is it because I'm not sure I really care? 

And that's where I feel like I need to do something with my life. 

Make a difference. 

Count. 

Do other people feel this way?

Am I having a crazy, mid-life, freak-out kind of moment?  

A need to make my mark on the world moment?

An I haven't lived up to my potential kind of moment?

Cause most days, it's a crawl back in bed, pull the covers over my head, ignore the world kind of moment. 

And I'm struggling with being able to conquer that. 

Wow, the difference a year makes. That and a working heart!

One year ago, almost exactly to the minute, I was just getting comfy in an almost empty waiting room inside Boston Children's Hospital. 

Waiting room. 

What an appropriate term. 

I was waiting for news Ethan had been successfully intubated and was doing well in his cardiac MRI. 

I was waiting for news he was now getting his echo. 

I was waiting to hear they had moved him to the cath lab, gained access, and begun the cath. 

I was waiting for my husband and sister to arrive from KC. 

I was waiting for answers. 

And I was a nervous wreck. 

When Nurse Kate called and excitedly blurted out "they got it in!  Meet Dr Porras in the consult room", my waiting was over. 

I think I finally breathed. 

One year ago I handed the bald kid over to a bunch of strangers who were attempting to do something that had never been done before.  Something that doctors that had known the bald kid all his short nine years of life-and before he became known as the bald kid-said they couldn't, wouldn't, attempt to do here. 

One year ago we left KC with the thought in the back of our minds like a huge pink elephant in the middle of the room that we would travel to Boston as three, and return as two. 

We made arrangements for our other kids to get to Boston in a hurry if needed. 

Arrangements for a transfer back to KC and a doctor who would accept him for compassionate care if needed. 

Arrangements for the bald kid's funeral. 

We went to Boston not knowing what, if anything, they could do to help him. And though it sounds morbid to some, the only thing I knew I had control over were making those arrangements. 

We left with so many what-ifs. 

And returned with a miracle. 

A year later the bald kid still has a perfectly functioning Melody Valve. 

A normal functioning right heart with great pressures.  No leakage, no pulmonary edema, no pulmonary hypertension and no need for oxygen. 

He has gained 11 lbs and grown 2.5 inches in one year.  The kid who weighed 36 lbs for 4 years gained 11 in 12 months. 

He's sitting up unassisted for longer periods of time. 

He's staying awake during the day, all day. 

He's happy and healthy and only had one hospital admission in the last year. 

He's a miracle, a success story to rival all success stories, he's amazing. 

And he's still here. 

Thank you to everyone who helped us along this journey and kept the bald kid in your thoughts and prayers. 

It's amazing what can be done in a year with a heart that works. 

Ferguson, Missouri...my thoughts

I've avoided posting on social media about the ordeal in Ferguson, MO, but that doesn't mean I haven't been following it. I've read and read and read articles and blogs and comments from both sides.  And I've been deeply saddened by the lack of humanity regarding it all.  My mind has been all over the place since it happened.  My heart hurts and I've cried over it all. 

I've prayed for and asked for peace for everyone involved.  

So, as I write out my thoughts and my opinions and my feelings on this incident, remember this: they are Mine. No one is forcing you to read my blog, but if you read it and agree or disagree, and wish to maturely and appropriately respond I welcome it. But if any comments become rude or nasty, or petty name calling begins I will remove them.  If a threatening tone is taken, I will block you.  This blog post may not be well received by everyone, and I'm ok with that. Because it's what I feel and what I feel I need to write. 

Most of you reading this know enough of my background, but for those who don't, bear with me, as I provide a little.  I am married to a Police Officer.  I was the President of our Police spouse's association for 7 years, having recently stepped down in January of this year to spend more time with my family.  

I have 3 children; a 17 year old daughter, 15 year old son and a 10 year old child with medical and special needs. 

I am an X-ray/CT Technologist and have been for 21 years.  

I'm a breast cancer survivor. 

I have a large, extended family of step/half/real siblings and parents. They have always been my sisters and brothers and moms and dads, not my step or half siblings or parents.  3 of my siblings are half Hispanic.  All of them are crazy.  Some more than others, and I'm sure they would say the same of me.

I spent my middle school years and first year of high school in a small Kansas town that was predominantly white and Hispanic. 

I graduated from a Kansas City, Kansas (yep-in the Dotte) high school that was more culturally diverse. My graduating class was pretty evenly split black and white. 

We all got along. For the most part-other than your typical high school drama, I don't recall any race issues.

I've been engaged three times and only married once. 

My three kids have two different dads. 

I've been a single mom. 

I've lived in a trailer park and mopped floors at my Mom's restaurant for cash for diapers and formula because my paycheck ran out after paying rent, utilites and a car payment, but still had a baby to feed and clothe. 

I have a $500 certificate degree education from which I earn about $60K a year on. 

We've filed for bankruptcy and we've had to short sell a house. 

We receive government assistance for our son; he is on a waiver, but let's call it what it is; he receives MO Health Net, or Medicaid, as secondary coverage after our private insurance pays what it will. 

Few of you know all of those things about me.  

Many of you probably don't know half of them. 

I'm not embarrassed by any of it, it's who I am. 

I've had to live with the consequences of my actions; some good, some bad. 

All were my choices to make. 

I'm a pretty open book, yet many of you are probably surprised at not knowing some of the statements above. 

And more than one of you reading this just judged me based on those statements. 

The assumption is that I'm from a white, middle-class family with a good job and perfect life. 

Which is as much as a stereotype as the ones formed when you realized I grew up in the 'Dotte, or was a single mom, or filed for bankruptcy or received Medicaid for my son. 

As I have stereotyped groups of people myself. I won't sit here and pretend I've never judged someone by the clothes they wore, or car they drove or neighborhood they lived in or job they held, 

or color of their skin. 

I would be lying if I tried to say I hadn't. 

And America is lying to themselves if they believe prejudice and racism doesn't exist today. 

That that was then and this is now. 

And I won't disrespect Black/Hispanic/Asian/Indian Americans and say that I have any idea what it feels like to be the victim of prejudice or racism.  

But I also won't apologize for being white. 

I will apologize for being apathetic. 

I will say that as much as I believe Officer Darren Wilson did not set out to shoot and kill a young, black man that day, I respect that many of you believe that is the intent of all cops.  

I believe that how we are raised directly determines our attitude towards law enforcement. 

And I can admit I had a great childhood with little to no involvement with the Police other than getting caught 'borrowing' a shopping cart from Dillons and pushing my younger sister home in it, or the occasional party gotten out of hand and being broke up by the Police, or a random speeding ticket here and there.  

Until I met and ultimately married my husband, a cop, I never really thought much about other people's attitudes towards the Police.  But over the last 12 years, I've seen and heard and read some terrible things people think about cops. 

They stick together. They beat and cheat. They lie and cover for one another.  They are egotistical assholes. They were bullied as children and became cops to get back at how they were treated. 

A dead cop is a good cop. 

Yep-we police families stick together. Nobody else understands the crazy hours, missed holidays and kids events, shift changes and fear like a fellow police wife. 

My husband has never beat or cheated on me. 

My husband is a rule-follower and would never lie or cover for someone shady. 

My husband is not an egotistical asshole, but with the things he's seen and lies he's heard in 20 years on the job he may seem indifferent and uncaring to some. 

My husband was never bullied. He was just the opposite and got suspended in high school for defending someone being bullied. 

And personally knowing a police widow, that last statement makes my blood boil. I wish widowhood on no one.  And if you agree with a sentiment wishing such, please unfriend me. Now. 

My husband has been shot at, spit on, been in filthy situations, car chases, foot chases, on murder scenes and suicides and fatal car wrecks. He's made death notifications and solved murder cases. He's put bad guys in jail and good people who make bad choices in jail. He's held the hand of a daughter who found her elderly mother deceased in her bed, and he's helped a family down on their luck living in their car with a place to stay and food to eat.  

He puts on a uniform and badge and gun and walks out my door every day to do a job he loves that one day could prevent him from coming home to me and our children. 

He would lay down his life for any one of you in the course of a regular work day if need be. 

Not too many jobs have that potential. 

I know mine doesn't. 

And though the "He" I refer to in these specific statements is my husband, it is also 98% of the hard working, honest cops I know personally. 

I can count on one hand the number of cops I know that are the poison fruit on the vine of law enforcement.  Because just like in every profession, assholes get through every now and then. 

The truth will eventually come out. It always does. 

If Officer Wilson and the Ferguson PD are covering up a bad shooting, I will be the first to demand just punishment.  Because one bad cop makes all cops look bad, and the Police I know have too much respect for their brotherhood to let that happen. And the good guys don't deserve it.   

The protesting I understand and respect.  And I will happily walk and stand beside you against blatant police brutality and violations of our constitutional rights. In a peaceful manner. 

The rioting and looting I don't understand.  I will never understand destroying someone else's property and stealing someone else's possessions.  But the raw anger and emotion behind it?  I do get that.  I'm an emotional person myself. And sometimes they get the better of me. 

And I fear the truth is being overshadowed by emotion. The facts need to speak for themselves. 

I know that I don't know what I can do to help, but I'm willing to do something.  Because I firmly believe that if you aren't part of the solution, you are part of the problem.  And that if we don't raise our children to love and respect one another as humans, humanity doesn't have a chance. 

And I've said this before; it all starts in your own home, church, school, job and community.  

And I believe that community includes every human being. Regardless of color. 

In the case of Michael Brown's death, I know this, and this only;  I wasn't there. And neither were you.

I stand on the side of what is right and true.  Those involved will have to live with, or died because of the consequence of their actions. 

I know a community is changed forever, a man will have to live with his actions and a Mother will never hold her son again. Ever. 

And all of it makes my head and heart hurt. 

 

Finally Done!

My surgery yesterday was to exchange my tissue expander out for implants. 

And it was the very last surgical procedure I will need!  

The tissue expanders have been in for a little over a year, and I am definitely not sad to see them go. 

They are heavy and hard and like my amazing plastic surgeon says-they are like pontoons on my chest. 

My new boobs are silicone and oh, so soft and not heavy!  

Dr B is a perfectionist, and she noticed a slight difference in the skin thickness above my left boob from my right, so she did some fat-grafting to fix it.  Which is basically a little liposuction from my hips to plump it up. The liposuction part is the part that hurts the most, so I get to wear a compression binder for 2 weeks.  She also fixed my port scar that looked pretty gnarly.  And she had to lift one of the sisters to match the other, so I feel like my boobs are sitting just below my chin!  

I got 900cc in one and 700cc in the other.  Go big or go home-that's our motto!  

I get to shower today, but no lifting or pushing for 2 weeks and no running or bouncing for 6 weeks and no heavy lifting for 4 weeks.  I can handle those instructions, which is why we are hitting the road to Colorado next week for 2 1/2 weeks of rest and relaxation with family!  

. 

And a little education for those of you that have had boob jobs that are not a result of having them both removed and feel the need to ask why I need so much time off work whereas you only had a weekend or a week off post-op....this is much more than a typical boob job.  See all the restrictions above?  That's why.  And I would have happily traded my breast cancer for your new boobs minus the cancer any day. 

I'm just glad to finally be done!  All I have left to do now is either get nipples or have them tattooed on. 

There are pros and cons to both ways, but both are done in the physician's office so no more surgery!!

I just have to decide which one I want, or both!  We just have to wait a couple months for the boobs to settle and then the nipples can be made. If we did it now, there's a chance I would have them pointing in different directions once they settled. Don't want that. 

In the meantime we've had some mini crisises at home. Hailey's window leaked water with all the rain and ruined her carpet pad and maybe even her bedroom carpet.  But our builder has been awesome and he's fixing it all up. Then Hailey noticed a water spot on her ceiling, and after a little investigative work, we realized our refrigerator is leaking from a connection in the back, thus dripping and ruining my hard woods and part of her ceiling.  Argh!  Now we are waiting for Nebraska Furniture mart to send somebody out to assess the damage and fix it!   Seriously. When it rains, it pours. Literally!  

But for all the bad crap, we've got lots of good stuff going on. 

Ethan has a new nurse that he adores, and she is so good with him. And she's been so reliable. We get her full-time 40 hours a week when we return from vacation. Woo-hoo!  

Hailey has been offered a full scholarship to Barton Community College in Great Bend, Kansas to play volleyball for them!  We visited the campus in March and really like the head coach Phil Shoemaker. 

And they have a pre-pharmacy and pre-nursing program that will transfer to KU in its entirety when completed!  

Parker has started back up with the Staley football team, going to camp for the last two weeks from 

6 am-10 am every day. He really enjoys it.  He will be starting in a new program at school in the fall called the Avid program for kids who are academically in the middle. He could make all A's if he just put in a little more effort, so now he will have someone he's accountable to daily. I'm hoping this helps, even though I know it won't help with the food hoarding and laundry piles in his room.  Oh well, one step at a time. 

Brian is still at Shoal Creek days, and seems to always be running his ass off for work.  It's nice though because he can come and help me get E on the bus and eat lunch at home. 

Me?  I'm changing jobs in July. I will be working part-time Saturday and Sunday nights at Shawnee Mission Medical Center and staying on PRN at NKCH.  I'm much more of a night person than a day person so these hours are perfect for me. All I have to do now is get my Kansas License, which I have to go to Topeka and the Kansas Board of Healing Arts tomorrow morning for them to decide if I get it. 

I hope they won't mind me being all hopped up on Dilaudid and Valium....

Otherwise all is well, just ready to bust outta this town for a while, new boobs and all!  

Happy Mother's Day

I've started and stopped four different versions of this Mother's Day post.  

Type and typed, then read and re-read only to erase because what I was trying to convey just wasn't coming across the way I wanted it to. 

I'm trying to say how little I really knew about being a mother until I actually was one myself. 

How I never really thought I could love another little human so unconditionally. 

How I never thought I could protect someone else and their feelings with such fierceness. 

How I never realized in the dark hours of night I would long to hear the shallow breaths of a sick child. 

How much sticks and stones do break bones.  

And words really do hurt. 

And how to control my feelings of anger when those hurtful words were directed at a child of mine. 

That I would happily give up late nights of partying with friends for early mornings at a soccer/football/basketball/volleyball game. 

That I would one day miss the sweet innocence of a little girl in love with a purple dinosaur as Barney went by the wayside for boyfriends and heartbreak and girl drama. 

That my day off would consist of loads of little people laundry who couldn't wash, dry or put any of it away themselves. 

That when those little people could actually do that for themselves, I would miss folding little socks and hanging little shirts. 

That anyone could survive on PB&J, Mac n cheese, and spaghetti for years. 

That I could survive on very little sleep for years. 

That the smell coming from a 14 year old boy's room/gym bag/locker does not actually indicate there may be a dead, rotting corpse of some kind in there. 

That I would argue and advocate for someone else's needs over mine in a hot second.  

I never really thought I would drive a mini-van. Then sell it, only to miss it and buy another one. 

I never fathomed how full my heart would be when I heard someone call me Mommy for the first time. 

Or the bajillionith time. 

How I would feel defeated when one of my little people did. 

And that I had the ability to make them feel less defeated. 

That I would need a Kleenex with me at every game, recital, program, or event because overwhelming pride makes me cry like a baby. 

That little people would rely on me. And look up to me. 

That I would base a home search on school district boundaries. 

And vacation destinations on the nearest Children's hospital. 

That it would be the hardest, most gut wrenching, heartbreaking yet rewarding and joyful job I would ever have. 

That payment for this job would come in the form of kisses and hugs and laughter and misspelled handmade cards. 

I never thought I would have to be so strong. And that I could be so strong. 

If someone had warned me of all of this, I'm not sure I would have done it. 

And I would have missed out on the best thing in life. 

Difference of opinion....

Ethan is definitely on the mend, looking better today than he has all week. 

He's off oxygen, tolerating full feeds and looks and sounds better. 

He even showed off a little today by sitting up. 

But, there's always a but when it comes to the bald guy, right?  But... His heart rate has consistently dropped every night. As low as the 30's.  And last night his nurse refused to give his heart meds until the team came up and looked at him because he was at 45- and his heart meds can drop his rate and pressure even more. 

The Purple Team docs have been fantastic, and they seem (or are doing a good job of acting like) they understand my worry.  Which is why they have asked Cardiology to weigh in unofficially. 

Dr Woodhouse-FP Resident in charge of stinky right now seems to 'get it'. He feels we are dealing with a 'lesser of the two evils' scenario. Not on Digoxin and his bradycardia may go away, but not on it and there's a really, really good chance Ethan goes back into severe congestive heart failure.  Like last year. When cardiology said but it's not his heart.  

On Digoxin, he may have continued bradycardia, but we hopefully avoid a repeat of 2011. And 2013. 

Digoxin=bradycardia

No Digoxin=CHF

Which do we prefer?

Neither, to be perfectly honest. 

Because our little bald guy just doesn't play by the rules, we have to choose which evil we can live with. 

It's so frustrating, because  his heart rate just seems to drop and drop for no reason. And because he doesn't appear to be in any distress, Cardiology says it's all good, ok, no problem. 

It's just sinus bradycardia. 

It's his new normal. 

Nobody ever died of bradycardia. 

Was the exact statement I got. 

Hmmm, I guess not, but what about my neurologically challenged little guy?  What about if he gets down to say, the teens, and his little brain can't tell him to speed it back up?  Cause they kept using his disability last year to explain why his valve failed, again, and why he can't tolerate pulmonary insufficiency, so shouldn't that come in to play here too?  Oh, wait,  that was when it was in their favor, not mine. 

As long as it's beating, it's ok. 

Even if it's 10 or 12?

Nobody ever died of bradycardia. 

No, I guess it's when the heart actually stops beating that you actually die, right?

Let's discount the slow rate at which the rest of his vital organs are perfused while his heart is beating so slow?  Like his brain?  

And we don't monitor him at home, so I don't know he's going so low and whether or not I need to intervene.  Because here, at the hospital, when it drops to a certain point policy states you start compressions, right?  Right......however.....

So, basically, you're telling me his heart will not be allowed to stop at the Hopsital, but at home it's ok?

Hmmmmm, interesting concept. 

But his heart won't stop. I promise. 

That's an awful big promise to make Ms Darcie, Cardiology NP. 

I sure hope it's one you can keep. 

Cause I don't forget promises like that.  

So to pacify me they are doing a holter monitor tonight. 

And I'm calling Boston. 

Don't get me wrong, I'm not mad at Cardiology, and I'm not unhappy with our care. As a matter of fact, this is the first time in the last 4 years that I feel like they are taking me seriously from day one, not waiting for Ethan to decompensate.  And for that I'm very grateful and comfortable with him here. 

And I'm very grateful it's been a year since we've had an admission with him. And that he went all winter without a serious illness, and we've been off oxygen for 8 months, and he's gained 11 pounds, and all of those things I fought so hard for by taking him to Boston. 

I just wish he could get a break.

That he didn't have to fight so hard.

 All. 

The.

Time. 

But I won't stop fighting for my little guy. 

In the meantime, in the words of Elsa, and Ethan's new favorite movie we've watched a dozen times this admission, (thank you Carissa!)

#tswifthassomecompetetion

 I've got to just

Let it go, let it go

You'll never see me cry
Here I stand
And here I'll stay
Let the storm rage on

The cold never bothered me anyway. 

Loving some Frozen!

Not loving his holter so much. 

Wordless Wednesday

It's not really a post without words-but these two pictures don't need words. 

Yesterday this face described Ethan's attitude;

And today;

Ethan was quite creative in figuring out just how to get those fingers in his mouth around his IV, board, tape and cotton and he was quite pleased with himself!  

Long story short as to how we ended up at The Mercy after such a good run.....

Ethan's allergies have been acting up with this lovely Missouri spring weather-70's one day, then 30's the next- so we weren't surprised he has had a little runny nose and congestion.  But Sunday night he was coughing so much and so hard he threw up a few times. We let his tummy rest overnight and opted not to feed him. By Monday morning he looked and sounded terrible, had thrown up at some point in his bed overnight and was purple around his lips. 

After a very short deliberation period of ER time, and sats in the 80's requiring 2 liters of oxygen, and a fever of 100.5, the big decision was not whether he was being admitted, it was under whose service??

So, Cardiology came down, gave him the once over and punted him to General Peds with the promise they would be close by if needed.

As the results started coming back; chest x-Ray no different from last one, blood cultures negative, white count normal, blah, blah, blah, the real culprit showed itself; Human Parainfluenza Virus Type 3. Or HPIV3. This virus is not associated with the flu at all, but rather a common virus. It just doesn't put most kids in the hospital. But Ethan's had it before and needed admitted, so no surprise. The Type 3 though, is a new one for him, and can cause bronchitis and pneumonia so he needs to be monitored pretty closely.   

And I will admit the Purple Team resident we have is pretty sharp and happy to defer to me for all things Medical/Ethan related. 

By Tuesday morning when he had spiked a 103.5 temp and had a gushing bloody nose with a drop in white and red blood count, they decided to make sure it was not his heart and ordered an echo. 

I have to admit, I was prepared to hear the worst-that 8 months later his miracle valve was leaking and he was back in congestive heart failure. But the good Lord must have figured I'd had enough, because the news was good. No, not good, amazing. The pretty little miracle valve that has saved our boy's life is still working as perfectly as the day it was put in!  Woo-hoo and hallelujah. 

His heart rate is consistently dropping, hanging in the 50's most times, and even got down to the 30's last night. That still freaks everyone out, and I would be lying if I said it didn't freak me out too.  Not sure what to make of the old/new bradycardia after we had heart rates in the 80's for so long. 

But since Cardiology seems less than concerned about it, nobody else is either. 

And we all know they are never wrong....if you inferred some tone of sarcasm here, you are completely correct. 

I know that as we age, our heart rates slow down, but come on, he's only 10!

How low does it have to get before we get worried he may just brady down so low one night he doesn't wake up?  

We don't monitor him at home, so I don't have an alarm to alert me to stimulate him to bring his heart rate back up.  And we know it's not his digoxin, they did a dig level to make sure and his EKG appears normal for him. 

But, since it appears fruitless to try and convince anyone else that something's just not right, I'm going to just go with it and enjoy having this little bald guy on my lap, trying to chew on his fingers while we rock out to the Taylor Swift CD. For the 50th time today.  

Best news ever!

As we approached the 6 month anniversary of Ethan's Melody Valve placement, I've been kind of expecting bad news. Now, I try not to be pessimistic, because it simply is what it is.  If this valve was going to fail, we would definitely expect to see it by this point, that and it was right about this time with his previous cadaver valve that we began to see his failure.  And even though I try not to get worked up about these appointments, or the results, I'm honestly not sure I could handle bad news. 

Good thing I didn't have to. 

Because thanks to God and all our supporters sending prayers for good Ju-Ju to the bald guy-there is NO leakage at all. NO failure, NO right heart dysfunction, NO left heart dysfunction, NO pulmonary hypertension or edema. NO vegetation. Just a perfectly seated little stent valve working perfectly well. 

So well, in fact, that we no longer have cardiology appointments every three months-we get to start seeing them every 6 months!  Ethan looked so good all the way around today-gained 3 more real pounds-our forever 36# boy now weighs 46.64#, and we can tell!  His oxygen sats were 100% on room air, and he even sat up in a chair in the exam room waiting to see his favorite bald guy-and show off a little.  

Dr Kaine was pretty darn impressed. 

And so are we.   

So are we. 

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!