I wanted to circle back and let everyone know that my daughter's surgery went very well and smooth. Aug 28 feels like a long time ago, it's hard to believe this little girl had heart surgery. She is moving around and about with her life happily as if nothing had happened. Of course her movements are quite limited and she's anxious to get back to her real self which includes lots of physical activity, running and playing soccer with her travel team, but all things considered she is doing really well. I feel fortunate and privileged to have such an excellent team of doctors, anesthesiologist and nurses at Weill Cornell to make it such a smooth experience, relatively speaking.
We ended up speaking with her about the surgery 1 week prior, which isn't so much time, but turns out to be plenty for a 10 year old. She was angry and scared at first, but we were able to answer all her questions on day 1 then she had a couple more questions over the next 2-3 days which we answered as well. The fact that my husband had several surgeries and her 12 year old brother had surgery helped answer her questions about anesthesia and waking up. The team at the hospital was extremely supportive, especially the child life support team, Allison was simply amazing. She really managed to understand where my daughter was at and provide her just the amount of information she needed to make her feel comfortable. It is way easier to be on the other side now, but I would want to tell parents above all to make sure you find a surgeon and a team your really trust and trust them. And all will turn out fine. Thanks for the support on this thread! Best, Jennifer
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Jennifer Zana
New York
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Original Message:
Sent: 07-31-2020 00:15
From: Jennifer Zana
Subject: Coronary Unroofing Surgery Aug 28 for my 10 yo daughter
Hi All,
I read so many stories here and sympathize with all of you. So much bravery and amazing inspiring stories out here. Last week I learned that my 10 yo daughter has a right coronary anomaly which needs to be corrected though heart surgery (unroofing procedure) to reduce her risk of sudden heart event. I am so stressed and terrified since that I'm finding it really hard to cope with the wait- another month. It's particularly hard as she doesn't know about it yet and the hospital nurse recommended not mentioning until a few days prior, maybe 3 days before coming to pre-op. She had some chest pain, that is how we even found out about it in the 1st place...
I am absolutely panicked and stressed, having trouble sleeping, eating... even though I know that I should be thankful for having found out thanks to her symptoms. She would be at much higher risk had we never found out.
Does anyone here have experience with coronary unroofing? How do you tell a 10 yo she needs heart surgery? What can I possibly do for her not to panic? What will help her coping post-op??? Any advice you can share I would be so grateful, thank you all! Jenn
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Jenn Z.
New York
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