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Jun 2, 2021
10:29:45am
NewYorkCougar Playmaker
The Miracle of My Daughter, Part 5
Part One: https://www.cougarboard.com/board/message.html?id=26207094

Part Two: https://www.cougarboard.com/board/message.html?id=26213437

Part Three: https://www.cougarboard.com/board/message.html?id=26218593

Part Four: https://www.cougarboard.com/board/message.html?id=26228386

I went back to work in January of 2017. We were desperately hoping for a break and that the valve repairs done in May 2016 would hold for years to come. Frankly, I was hoping we’d never have to see the inside of the cardiac intensive care unit (CICU) at Primary’s ever again. Surely three heart surgeries were enough?

In April I was thrown into a work project with our SVP of Sales. He needed some slides for a big meeting with executives from one of our largest partners and several folks that he’d normally work with were on vacation, so I stepped up to get it done.

Our daughter’s regularly scheduled echo was also in April. I made a point of going to these with my wife. I may have missed one where I stayed home with our boys. We’ve had bad news at so many of these checkups. I want to be there if we are going to get that kind of news. For this particular check-up, I worked from home that day and I remember taking my computer with me to the appointment. I’m pretty sure we had all three kids with us. And iPads. Thank goodness for iPads. How did parents entertain their kids and keep them quiet at times like these before the invention of iPads?

These checkup appointments generally follow the same formula: you get called back and shown to your exam room; the nurse takes vitals, a technician takes an echo of your child’s heart; the cardiologist comes in and performs an exam on your child and asks a bunch of questions, and if he or she hasn’t already done so, the cardiologist leaves to review the results of the echo. The cardiologist comes back in and discusses the results.

So I had a lot of waiting time and figured I’d use it to get a jump on these slides. I wasn’t expecting any drama from the exam.

I was furiously working on a slide when the cardiologist came in and said very somberly that he doesn’t have good news.

I remember looking up from my computer and seeing his face. This was serious. I gently shut my computer and put it aside.

Not again. Please, please, please, not again.

The repairs done on the aortic and mitral valves last year had failed. Both of them. They had both failed.

Here’s why that is significant: the valves regulate the flow of blood into, through, and out of the heart, ensuring the blood is flowing in the right direction. If a valve is inefficient or stops working, there is “leakage” of blood back into the chamber it came from (i.e. blood going the wrong direction). This messes with the internal pressures in the heart, which starts to work harder to compensate for an inefficient blood flow.

We needed to address this before her heart suffered permanent damage and/or she went into heart failure.

Had we screwed up by going with a valve repair instead of replacement in Surgery #3? Maybe we should have gone to Boston for the experimental procedure. We had hoped to spare our daughter from as many heart surgeries as possible by keeping her own valves, but it was now looking like we had to go down the valve replacement route.

This was tough to process. But there were some valid reasons we hadn’t gone the valve replacement route in surgery #3, one of which was that they didn’t make mechanical mitral valves small enough for our daughter’s tiny heart (she wasn’t quite two years old during surgery #3). If I recall correctly, we were hoping the valve repair could at least buy her time to grow so that if a mechanical valve had to be put in, her heart would be large enough for one.

Our daughter needed two new heart valves. While new valves would solve the efficiency issues, they brought their own drawbacks. A new valve is either going to be a mechanical valve or a donor valve, which means neither one will grow with your child. Every time your child outgrows the valves, they will need to be replaced. A mechanical valve will always need to be replaced via open heart surgery. They don’t do donor valves for mitral valve replacement. The outcomes were poor. This may be changing with new advances/techniques, but back in 2017, mechanical was the only option.

We HATED that we had to put our daughter through this — not just one more open heart surgery, but two or three more, at least, before she stops growing out of her replacement valves. Sometimes a donor or mechanical valve just wears out. Bam, there’s another potential open heart surgery.

Side note: when a valve is outgrown, you can’t replace it with a significantly larger valve for a few reasons. First, the area where the valve sits is only so big. Second, putting in too large of a valve will also mess with the pressures in the heart. You need to increase valve size gradually. You can’t really try to reduce surgeries by using valves that are too large. .

How many open heart surgeries can our daughter’s body be expected to handle? How many before something goes wrong in the surgery? Or during her recovery? What if she’s on bypass for too long and has a stroke? What if we get her back, but she is diminished? What if, what if, what if.

This sucked. This was HORRIFYING.

I was so angry. I can still get angry thinking about it. I mean, when is enough ENOUGH!!!?

This kicked off another round of consultations and second opinions (we sought one from Boston Children’s Hospital again, but they never responded, which was frustrating). We agreed to move forward with a mechanical mitral valve replacement and with the Ross-Konno procedure to address the aortic valve — they remove the aortic valve and discard it, they remove the pulmonary valve and place it in the aortic position (this will grow with the patient as it is their own valve), they then put a donor pulmonary valve where the patient’s used to be (this will NOT grow with the patient, but may be able to be replaced via catheter and not OHS).

This meant as part of the repair, we were removing a perfectly functioning valve in our daughter’s heart (the pulmonary valve) and moving it to where the aortic valve used to be. We hoped this was the right decision. Oh, how we hoped.

Surgery number 4 was set for April 4, about a month before my daughter turned 3.

Let that sink in.

Work had again given me time off, whatever was needed, but I was determined to get back as soon as possible. I felt guilty being away, again.

On April 3rd we took our daughter to Primary Children’s Hospital for her pre-op appointment. About 20 minutes after we got home, my wife got a call. Our surgeon was going into an emergency surgery later that day and wouldn’t be available to operate on our daughter tomorrow. They’d call back with a new surgery date.

We suspect this meant that a donor heart was found for a local child waiting on the heart transplant list and our surgeon was prepping for that transplant surgery, which could go well into the night. He’d need to rest the next day (the day of our surgery). While frustrating, we couldn’t really be upset that someone else’s child was getting a life-saving heart transplant.

This gave us a few more days to spend together as a family and mentally prepare for what was coming.

Honestly, right now as I’m typing about this and remembering, I feel that sense of dread and exhaustion coming over me. These surgeries are so draining, so disruptive, so agonizing. I don’t have adequate words. Unless you’ve faced your child’s death, I’m not sure you can fully understand. I hope you never have to do that. I guess this creates something of a paradox - me writing about this experience in part so others can better understand while also hoping that you never have to fully understand.

We didn’t have long to wait. The surgery had been pushed back three days to Friday, April 7, 2017.

I’ll tell the story of surgery #4 and its aftermath in Part 6.
NewYorkCougar
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NewYorkCougar
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Related Threads Topic: Sitting in an ER exam room with my 7-year-old daughter. (NewYorkCougar, May 22, 2021 at 10:08pm)

Children:
The Miracle of My Daughter, Part 6 (NewYorkCougar, Jun 3, 2021 at 12:38pm)

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The Miracle of My Daughter: Part 8 (The End...For Now) (NewYorkCougar, Jun 7, 2021 at 12:38pm)
The Miracle of My Daughter, Part 7 (NewYorkCougar, Jun 4, 2021 at 9:39am)
The Miracle of My Daughter, Part 4 (NewYorkCougar, Jun 1, 2021 at 9:55am)
The Miracle of My Daughter, Part Three (NewYorkCougar, May 29, 2021 at 7:43pm)
The Miracle of My Daughter, Part Two (NewYorkCougar, May 28, 2021 at 2:24pm)
The Miracle of My Daughter, Part One (NewYorkCougar, May 27, 2021 at 12:59pm)
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