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!!