Wednesday, August 17, 2016

Update on Caden's Heart

I am thankful I remembered the persistent chill in the cardiac ward at CHOA from our stay five years ago, wrapping my sweater around me and attempting to stop my shivering. They prep Caden for his catheter, giving him medicine that makes him loopy: they should call this dizzy medicine, he declares through giggles. We all laugh together. I take videos, and he cries when they wheel him back, not for us but for his Kindle. Before the procedure they take pictures of his heart, and explain in detail the ways they will attempt to buy space in his valve if there is any narrowing. If, however, the valve itself is just too small (they put it in at five days old, after-all), they will only take measurements to gauge how soon he needs surgery. We nod and sign our agreement, trying not to dwell on the side-effects they dutifully describe in detail: possible arrhythmia and need to shock the heart, the stent “slipping” out of place, rejection of foreign material, etc.

They tell us it will take two hours, and we slip downstairs for coffee and breakfast, though my stomach turns and flips at the thought of food. We sit back in matching maroon arm-chairs, I read my book and Adam scans the news and flips channels to the olympics. We talk about how different it feels this time. Five years ago, we were reeling from the news that our son had a broken heart. Every decision felt fast and furious and we stumbled through it all like zombies. This time we had space to pray together, and think carefully about how to prepare Caden and Jayci, how to proceed with the best and most well-laid plans as parents and followers of Jesus.

Sooner than we expect, the nurse peeks her head in and says they are almost done. I guess this means no stent? we ask. She agrees, and we steel ourselves to talk surgery dates.

One thing you don’t necessarily want to hear from the doctor looking at your son’s heart is that they found something unexpected. To begin a conversation with the reassurance that Caden’s persistent shortness of breath is not anxiety but a heart that simply can’t keep up. The doctors tag team an explanation that the pulmonary valve is small, as expected, and will need to be replaced. But also that pressures in his right ventricle are entirely too high, even at rest, because of the combination of both this small pulmonary valve, and significant narrowing of a pulmonary artery (bc of scar tissue from his first surgery). His heart is working so so hard, all the time. They tell us, solemnly that he has always had Shone’s Complex (we have never heard of this, but apparently it just means an underdeveloped left side of the heart), that his mitral valve leaks, and that even his neo-aortic valve (the pulmonary valve they put in his aorta during his Ross-Konno procedure) won’t last forever.

Suddenly we find ourselves reeling again, and they say they will present his case this Monday and set a surgery date. A surgery that won't just be a valve replacement, but will also include a repair of the area narrowed by scar tissue. It’s not an emergency, they assure. But it will be soon.

We nod, Adam asks questions (while I focus on not-crying), and we scurry back to the room when they tell us Caden is waking up. We spend the next forty-five minutes holding Caden down while his entry-site bleeds and his pupils dilate in fear. It is just like his night-terrors, and nothing we can do or say will calm him down. Adam and I lock eyes, and we pray and I cry in helpless frustration. When he finally slips back into sleep, under the watchful eyes of the Berenstain Bears on Sprout, and the frantic beeping machines and flashing lights of the fire drill finally quiet, we sit back in the maroon chairs and exhale.

How will we ever make it through surgery? we ask our nurse. They will keep him sedated, she says.

Will his chest stay open? we ask. I don’t know, she answers: maybe.

I mean, she continues, he will be intubated and heavily sedated, because you don’t want someone you love to remember. To remember any of it, I agree, to dwell on all that pain, to know he breathes through tubes and has a chest splayed wide.

Adam and I remember though, and we will hold his story again. It is harder this time, we agree. Because we don’t just have to be tiny baby Caden’s guardians, but we have to actually parent him and Jayci through their all fears and anxieties right alongside our own. We have to prepare, and explain, and trouble-shoot, and figure out how to not collapse under our own emotional and physical exhaustion all-the-while.

For now, that is all we know: that Caden must stay mostly quiet and still for three days. After that, we still have lots of questions. What limitations will he face before surgery? What timeline are we on for his next open heart surgery (which right now I can scarcely imagine after how hard today was when it was a non-invasive outpatient procedure)? What do they mean that his aortic valve won't last forever? Those are all unknowns, and our hearts squeeze with fear even while Caden’s beats wild and pumps harder than it should.

We remind ourselves that He is held by the very One who made him. That his beautiful amazing heart is never a mistake, and that timing tumbles out exactly as it should. That doesn’t mean we understand, or that we have all the answers to any of our own questions. Instead, we wait in faith and ask for prayer. We promise to do our best to keep you all updated. We ask for prayers in advance, and thank you again for the ways you lift our arms when we are weary. We are grateful.
2 Caveats to this post:
1- I am worried that this sounds over-dramatic, like the heart-experts will feel like we are blowing this all out of proportion. But this is just how it all feels to us as we reel from unexpected news, before we have really talked to our amazing pediatric cardiologist and had things explained in careful ways after a little emotional space. 
2- We don't know what we need right now. Adam and I just prayed over my words, and over our hearts, because we both agree we feel like we need something, we just aren't sure what that is. More community, more space, more faith, more details, less phone calls, more phone calls, rest. We just aren't sure what is best for our hearts, our family, for Caden, for all of us. So mostly right now just pray for clarity for us? To figure out what we need and how to walk towards it. 

21 comments:

  1. Hello Rebecca. I don't know if you remember me, but my mom is Georgia Spearman. I don't know if this helps, but my niece (my twin sisters daughter, Kiley), has Shones Syndrome. My sisters name is Tanya (Spearman) Platt would not mind talking to you if you want that. Praying for you all.

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  2. From a CICU nurse, it's a big deal to realize your baby has to have surgery again, you are justified in the way you feel - if it didn't feel scary, you wouldn't love him the way you do. Here for you if you need to talk through anything.

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    1. Thanks Alex! I'm guessing we will see you when we are up there for surgery. It will be so helpful to have a friendly face!

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  3. Praying for you and your beloveds, dear friend.

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  4. So much to process. Praying for you all, sweet friend.

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  5. WOW! Blessings of Peace and Healing for Caden, you, Adam, Jacie, and Zay Zay! You all are amazingly strong people. I know The Creator will guide and direct your every decision as well as guiding the hands of the physicians HE has placed in the service of your family. As I know...where HE leads you will follow. HE WILL make it clear for you. Here if you need us. We love you dearly!!! Stay prayed up!

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  6. Holding your whole family before Jesus and begging for clear next steps, the perfect sort of help and the kind of peace that comes from KNOWING you are being carried. love you dearly.

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  7. Praying for all of you....peace and wisdom to cover you like a cozy blanket. May you know how very loved you are by so many.

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  8. Oh, gosh, Becca. I am so so sorry, and I love you and I'm praying for miracles and so much peace.

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    1. Thank you for your prayers sweet friend, miss you!

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  9. Praying for you. Got here via Marla.

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  10. How can we help besides prayers? Any way to give?

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  11. Replies
    1. Hi Ronnie -
      We don't have any way set up to give right now, we are still kind of waiting to see what surgery bills etc will entail. Thanks for checking in. You can also sign up for our family newsletter for more updates (http://eepurl.com/bKdu-P)

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  12. I shouldn't have read this at work, because my desk is soaked now.
    Sending love. Praying always.

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