Visiting the doctor, it’s only become a problem lately, and I think that’s because now she’s old enough that she understands that she doesn’t want to be poked at or touched. Prior to her surgery, she was young enough that by hospital policy she had to be sedated. That made it really easy. It sucked for us but when you knock out a baby it’s a heck of a lot easier. So now she’s too old and she had an appointment a couple of weeks ago and it was just a disaster. She was screaming and wanting to run away, like “No! No!” She’s two, she doesn’t want to be doing that! So I’m not sure what we’re going to do next time, but we’ll see.

 – Leslie, mother of Margaret, age 2, VSD

 

She skips into Dr. Geggel and the nurse Maureen, and she’s never hesitant and she just gets there and she knows that she needs a height and weight and she takes her shoes off and they need an EKG and they put the stickers on and you know, “Oh, I have to have an Echo” and she lifts her arm up and turns on her side. She just does everything that she needs to do, and never does it with a single complaint. It’s never been an issue. My son—this summer he needed a cardiac workup, and so he needed an echo and an EKG and they were putting the stickers on him and taking them off and he was like “Ow, ow, ow” and Isabelle said, “Chris, I had that done like 100 times!” It’s like, “Seriously! You’re ten, stop it!”

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve

 

She had a lot more questions about the more recent surgery and the worst thing that she hates is needles and having to have bloodwork done. We’re open with her, I don’t tell her a lot of times ahead of time what’s going to happen. We honestly didn’t tell her about the surgery until a week before we had to go up. We talked to her the day before to explain the pre-op care and the pre-op appointments. She knows the little chest x-rays where they take a picture of her heart, she wears the lead apron to protect her, so she knows that that’s something that’s okay and doesn’t hurt her. She knows the echo is the jelly on her chest and she’s fine with that.

The bloodwork is where we get into a little bit of difficulty. She’s never had to be restrained, typically she sits on my lap and I hold her kind of in a bear hug. She sits there and does it, she’s not happy, she normally cries through it, but she gets it done. I explain to her going into it why she needs to have something done, that it’s very important and I say to her, “I would never make you do something that I didn’t feel was important or that wasn’t important to take care of your heart.” She kind of accepts it, she cries, but it’s nothing ever worse than that. We’re always very open with her as much as we can be without scaring her.

The scariest thing that she’s been through was when she was awake and they extubated her. I could see the fear in her eyes. I remember in the ICU when they extubated her, she was awake and she was fighting the sedation, the doctor at first said, “We need you to step out” and I said, “I can’t step out, she needs to have me there, I’ll be able to calm her.” I never go in playing the nurse card, I like to just be the mom, and I remember saying to him, “She’s definitely getting upset,” and they were at the point where they were going to have to tie her arms down because she was trying to take the tube out, and I said “I’m a nurse, I know what this entails, please let me stay, I can calm her down.” He finally relinquished and I looked at her and I was like, “Amelia, you need to calm down, you’re going to do this quickly, mom is going to be right here.” So they did it and I remember the doctors saying, “Wow, I would have never expected her to react the way she did to your voice, and just to be able to calm her and get her through it.” She was more fearful when they were going to take the chest tubes out, she got very emotional and I again said, “it’s nothing that they can’t not do.” So she remembers those sorts of things, so going up to a visit with Dr. Lang is like “Do I have to get the needle?” or “Are they putting anything in and then they’ll have to take anything out?” because she’s thinking back to the tubes and things like that. So I feel like the more open we are, the more relaxed she is and knows what it’s going to entail.

 – Roxanne, mother of Amelia, age 7, Dextrocardia

 

After that arrhythmia episode last summer, she had a very hard time going to sleep for the month after that because the feeling of going to sleep was like the feeling of when she lost consciousness. So she would often get in bed fine, but then as she was starting to fall asleep she would have difficulty. We actually had her go to a therapist that Dr. Alexander recommended, and she really didn’t like talking to the doctor about this. So I told her, “This doctor is here to help you deal with these feelings and to help you be able to go to sleep by yourself, on your own without crying or being worried that you’re going to die.” Every night she would cry out. So she said, “Well, if I sleep by myself can I stop going to the psychologist?” And that was it! I mean to some degree I think she has suppressed her anxiety because she doesn’t want to talk about it. I don’t know that that’s really the best outcome and the best way to deal with it, but I think fully coming to terms with your own mortality is a challenge for anyone, let alone someone who is only eight years old.

 – Catharine, mother of Willow, age 8, Long QT Syndrome

 

For her it’s the stickers. She is anxious until it’s communicated with whoever is doing it that she wants to take the stickers off. I think she really, really wants to do that. I’d say, “there’s a lot of things that I don’t like to do too, but this is just part of what we have to do, and we don’t have to like it, but we have to do it.” And then I usually say, “But we’ll go get a treat or do something afterwards, and do you want to bring a stuffed animal? Is there anything you want to bring with you?” And so she often brings her Red Sox stuffed animal doggie with her and we talk about it. I don’t really talk about it until the day before, so she doesn’t have all this time worrying about it because usually it’s scheduled appointments.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker

 

He went in for a cath when he was about six. They went to put an IV in, and he absolutely wanted no part of it. His anesthesiologist was wonderful with him. He actually brought everything that you use to do the IV, and he had Austin be the doctor and do his arm first. I’ve got pictures there of the doctor with his arm, Austin’s tying the blue rubber band around it. That helped. Another time, I bought a teddy bear and brought it back up to him, and one of the IV nurses, she showed Austin how she put the whole PICC line, if you will, on the teddy bear’s arm, and gave Austin empty syringes. She showed him how to flush it, how to put the medicine in, and the little bear, he still sleeps with every night. Picc the bear, he goes everywhere with him. He goes, “We have to take Picc!”

 – Grace, mother of Austin, age 10, TOF