Saturday, October 11, 2014

My Sweet Pea's Heart

On August 24th, my five-year-old middle son walked off the edge of a playscape and got hurt.  Hearing my husband's reaction to seeing the fall, I rushed over as Adam scooped Sweet Pea up and sat him down on the playscape to look at him.  He started to lay down and I realized he'd passed out.  He was kicking his legs and I thought he must be having a seizure.  I felt panicky and told Adam to call 911.

By the time he grabbed his phone from a few feet away, Sweet Pea was conscious again.  He didn't talk for a couple of minutes, and didn't make any sense for a couple more, but the crisis was over so quickly that we were left reeling, unsure of what had just happened.

When we saw the doctor, she thought he may just have passed out in reaction to the pain, that it may not be the neurocardiogenic syncope that we have in our family's medical history.  That was my fear; I worried this would happen again and again throughout his life.

Our pediatrician ordered an EKG, which for some reason I assumed would reveal nothing.  And she thought it looked fine, but said she'd send it to the specialist to read it, to be sure.

Later that day she called to say that the EKG showed something.  By the time we hung up I had written down the names and numbers for two pediatric cardiology offices; I was supposed to see one within the week.

But I couldn't really remember what else she'd said.  I felt crazy.  I felt SO guilty.
There'd been medical jargon, and I had no clue what it meant, and I was freaking the $#%@ out.  I wracked my brain for the word while I called my sister, who did her best to talk me down.

She asked if the doctor had said Long QT Syndrome.  I thought not, but then I started to worry that was it, and I was even more freaked out, because I knew that would be a very scary condition.  I had Adam leave a message with the pedi that we needed another call to go over it again.

Finally I started Googling EKG, or something, and there it was - "pre-excitation."

I was a little familiar with one form of pre-ecitation syndrome.  My sister has Wolff-Parkinson-White Syndrome.

Adam and I watched a video online and learned that electricity should only travel between the top chambers and bottom chambers through the AV node.  But Sweet Pea has an extra pathway.  So electrical impulses can go through there, as well, and the heart can beat too quickly.

The pediatric cardiologist confirmed Wolff-Parkinson-White Syndrome, and also said he has an innocent (harmless) heart murmur.  After a long ultrasound we were told that his heart is structurally sound.  So the only concern is the WPW.

We were referred to another pedi cardiologist, an electrophysiologist who treats pre-excitation syndrome.  He put SP on a heart monitor for 24 hours to determine if the accessory pathway might be a weak one.  Sometimes with WPW, when the heart gets beating really fast, the pathway is too weak to keep up and the heart rate kind of maxes out - or at least that's how I understand it.

Sweet Pea's extra pathway isn't wimpy.

The biggest concern with WPW is that, while it is rare, people can die from it.  And there's no way of telling who might die suddenly and who might never even have an episode of an excessively fast heart rate.

So on Tuesday they'll send a catheter up through the femoral artery, into Sweet Pea's heart.  They'll locate the pathway and, depending on where it is, will use either hot or cold energy to zap it.  The success rate of radiofrequency ablation is 95%.  The risk of a major complication is about 3%.  The risk of sudden death is 0 to 0.39% per year.  Much lower (yearly) than the risks involved in treatment - but as terrified as I am of the procedure, I am more afraid of a .39% chance of Sweet Pea just suddenly dying from something we can cure.

And I really am terrified of medical procedures.  I passed out over shots for most of my childhood.  I took care of my mother when she had breast cancer, and I barely stayed conscious when she had her lung drained to treat pleural effusion and when she had a PICC line inserted.

I had my first son naturally to avoid having an epidural.  Giving birth naturally was incredibly empowering, so the other two were born without interventions not out of any fear.  But the first time around, I was more afraid of that needle and the possible avalanche of medical interventions than I was of contractions.

I'm terrified of sedation, even.  My mother's heart stopped twice under anesthesia when I was a kid.

I'm an anxious person to begin with, but the anxiety over this situation is becoming unbearable.

Sweet Pea & Magoo celebrating my blog's 2nd birthday with cupcakes at Quintessence.  He has such a beautiful smile, but it's hard to catch on camera.  I told him to smile like I was going to tickle him, and he laughed and acted like I was actually tickling him.  Sweet, silly boy.
For some reason, I've not talked about it much with people, in real life or on social media.  And that's increasing my anxiety.  I feel like there's not much point connecting with people on anything, when the most important thing is one I'm mostly guarding.

I've become almost silent on the KANIP Facebook page.  I didn't follow through with finishing my logo contest, I barely promoted Quintessence.

It's hard for me to put energy into advocacy when I feel like, for two years now, advocacy has often taken priority over my family - especially in regards to my desire to provide them with all that comes with the homemaker side of my job.  And right now I just want to focus on my family.

So I've gradually drifted away from posting.  And it sucks.  And it's awesome.  I'm starting to let go of some of the anxiety I have about staying current with breastfeeding news and posting regularly and maintaining my reach and keeping up with Facebook algorithms, etc.

But as nice as the vacation from my work has been, this passion of mine being neglected isn't sustainable.  Working on pro-breastfeeding legislation is extremely important to me.  It's my Rose, if you're familiar with "The Little Prince."  I've put too much time into her to give up now.

So, I guess I've come to feel that I needed to put this out there.

Thankfully my friend Mandi helps me admin the Facebook page, and she has shared funny memes and thought-provoking articles while I've been turtling.  But I need to feel like this situation is not in the way of me posting a funny meme, because right now I wouldn't bother.  It seems too unimportant compared to what I want to be saying.  I feel like I've needed to explain why I've been absent.

And I needed to write it out, to process it.  I don't really understand exactly why I feel like I need to put it on my blog.  It's not about breastfeeding or even feminism or gender issues or body image or anything non-breastfeeding that I sometimes share about.

I guess that maybe it's that this blog is such a personal outlet for me.  I have an impulse now to talk about this because it's so personal, but I've been holding it too tightly.  I need help to carry it.  I've been telling friends and colleagues more.  I hope that the more I share, the more I'll let go of my fears and anxiety.  Because they get worse the closer Tuesday gets.  And my baby needs me to be strong, not terrified.

I know that, in a way, this is no big deal.  There are far worse things.  I'm thankful the WPW was diagnosed and can be treated.  Still, this is my sensitive, compassionate, precious, sunny little boy who tells goofy jokes and gives the best snuggles and is just freaking delightful.  And lucky as we are that it's not worse, I'm still scared.

I'd appreciate any prayers, positive vibes, and good juju that you can send Sweet Pea and my family and the doctors and nurses and anesthesiologist treating him on Tuesday morning.  And if you have any advice about preparing the boys and/or getting through this, I'd appreciate it.

7 comments:

  1. Wrapping y'all in prayers mama!!

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  2. I remember the day I found out my baby needs to have open heart surgery. It's so terrifying. He has AVSD and WPW. I felt like I was losing my mind when we found out. It is so stressful. I created a Facebook page called Healing Hearts Families of Children with AVSD. I know it's not exactly the same but if you'd like to join I know it's nice to have parents around for support who also have little ones with heart problems. So much love and warm wishes to you and LO mama! Hugs!

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    1. Ariel, I'm so sorry! That's so scary! How wonderful that you've used your situation to create a support system for others. I joined, thank you. You & your little one will be in my thoughts!

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    2. Thank you Hun! I truly appreciate it! <3 I'm so glad to see on FB that sweet pea is doing great today after his procedure! I'm overwhelmes with joy!

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  3. Sending much love, and many heartfelt prayers, to you all! I'll be thinking of you guys Tuesday - let me know if I can do anything to help!

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  4. The thing about advocacy, is that the need for it isn't ever going away. That sounds scary but it's really more freeing. Because if a season in your life means you need to focus your attention elsewhere, that's okay. Then you can come back. When you look back over a decade or two, you'll see what you've accomplished - not just over a short time like a few months or even a couple of years.

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