Shana: Last year’s catheterization one was the first one she actually talked about. Other than that she was just so tiny. But last year was the first one she knew what was happening.

Nick: And they had been giving her medication and stuff to help her cope with it.

Shana: When they’re little they give that memory stuff that makes it so she doesn’t remember it. So she had that for the first couple of times, but last year was the first time she didn’t actually have that medicine.

Nick: The first time when she woke up—most kids are hungry, first thing she says, “I don’t have any clothes on!”

 – Nick and Shana, parents of Jade, age 6, Dextrocardia

 

We were in the room when they gave Emma anesthesia, and the minute they rolled her away we both just started sobbing, it was too much—that was hard. And she at that point was kind of giddy, but then she started to cry, as she got rolled away. The anesthesia must make you so emotional, she went from singing to crying. And that image of your child getting wheeled away, we both started to cry it was too much. We went downstairs and were on pins and needles, because you know they told us they would call us part-way through and tell us how it went, and also Dr. Alexander did such a good job explaining what he was going to do.

They’d put her heart into SVT, they would find it, and they would either freeze or burn the spot. It sounds like make-believe, like I can’t even believe they can do this, and they go in through the thigh, the vein in the thigh up to the heart- and the idea that someone’s like, touching your child’s heart is—I found it really stressful. And then they called and said it went well, and we went upstairs and it took a little bit for her to wake up. It’s really something that’s hard, and again we’re dealing with a not life-threatening, pretty straight-forward thing, but when it’s your own child and it’s your child’s heart, it all feels really stressful.

 – Meredith, mother of Emma, age 9, SVT

 

The first time he had a cath it was very nerve wracking. In some respect it scared me a little bit more than the surgery, but he ended up healing fine and everything was fine with his leg, the flow going and all that, everything was fine. After that first time when we had a chance to talk to the doctors and ask the kinds of questions that we had, we were more prepared for the next time he went. But that time he did much better with it and he was there just for the cath, and the surgery was directly after that. We went up as an emergency for his Glenn, a procedure that normally we would have done separately, we actually had to do back to back. It was more the intensity of the emergency of getting him up there, for the surgery, I think that probably impacted the fears, but the second time, I remember it was a good experience. Everything went smoothly.

I remember bringing him for one procedure, and they medicated him beforehand. At that time, the movie Cars was a big thing, and once they did the IV and all that, and he started to get medicated and everything, we stayed with him until he was going down, and we sort of joked with him that he was driving Lightning McQueen and he started to feel woozy and he almost starting giggling and being happy, and it was lucky for us because he was going down the hallway with a big smile on his face, going into the cath, thinking that he’s driving Lightning McQueen. Afterwards they had him up right away, they brought him toys, I remember they brought him play doh and he was playing with the play doh, so he handled it very well afterwards.

 – Abigail, mother of Johnny, age 9, HLHS