I am the mom every doctor dreads. Seriously. I have no qualms about calling about the tiniest thing. I've called the step-down cardiac floor when I can't get through to anyone else. If I'm uneasy or unsure, I don't care if it's a Saturday morning, I will hunt down the pediatrician on-call. In the end, my son is just another patient to them and I'm just another neurotic mom, but I'm his mom and his health is my responsibility. So what if they roll their eyes when I call?
For example, this is the subject of the email I sent Sammy's cardiologist earlier today: Samson's Fontan-terrified mom's obnoxiously long list of questions. :-) It was followed by 9 questions about the Fontan, Fontan take-downs, how Boston handles Fontans, what we could expect and so forth.
The past few days have sucked in a painfully scary way. There's definitely a correlation between how much I read about other heart kids and how poorly I'm doing emotionally. A bunch of kids recently had their Fontans - and then had to have them reversed (taken down) because their bodies couldn't handle the change in dynamics. The next step at that point is usually transplant - though they can attempt the Fontan again some time later, the heart is usually too weak. I've seen relatively healthy kids go in for their Fontan and then end up with a take-down and then there's talk of needing a transplant. Do you have any idea how terrifying that concept is? How do you go in and hand over your relative healthy kid and then end up on the transplant list? How do you, as a mother, cope with the knowledge that that is a possibility for your child? How do you prepare for the months leading to that surgery?
Throw in that our insanely wildly active child has been hyperventilating and turning bluer than normal, and I've been on the edge. Thankfully, his cardiologist is so fantastic and quickly replied to my email, explaining that the out-of-breath wheezing and blue lips are 100% normal for this stage. He also kindly answered all 9 of my questions, helping to calm some of my fears. Hell, he even used the term, "uneventful Fontan". It amazes me that they can consider an open-heart surgery "uneventful"!
All of that aside, I have to say, I'm proud of one of my questions: Is there a higher risk of a take-down with a lateral tunnel Fontan versus an extracardiac Fontan?
Seriously - does that not sound like I have a clue or what?
My name is erika-renee, but call me eka - pronounced "eh-ka." I'm suddenly somehow 32, though I still love pigtails and overalls and silly, happy things. I live north of Boston, and I'm happily married to 
I'm a mama!
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