Well, when you go to sleep it feels weird, it’s not like regular falling asleep. You’re not dizzy, but you feel weird for like ten seconds, maybe it’s a little longer. You feel dizzy and everything shakes for ten seconds and then before you know it you fall asleep. It’s probably longer but you really can’t remember. When you wake up, you might a little sore or tired, but other than that it’s just regular. Also, you have to lay on your back for six hours afterwards. I sleep, eat, drink, watch TV.

 – Austin, age 10, TOF


Echocardiograms (Echo)

Alexandra: X-rays and echoes, those don’t hurt.

Mom: Sometimes when you get the echoes, what do you get to do? You watch a movie, right?  When they’re doing it. Or a TV show when they’re putting the gel on.

Alexandra: Yeah, that feels weird.

Mom: But you get to watch a show, so they always are thinking of great ways to make it so the kids can do this stuff.

 – Alexandra, age 8, and her mother, Pacemaker


Leah: The echo I kind of remember—I lay on a bed and they would rub this gel on my chest.

Dad: And then they look at your heart.

Leah: And they look at my heart…I was watching TV.

 – Leah, age 10, and her father, HLHS 


Electrocardiograms (EKG)

The EKG, it’s the easiest, it’s usually where you lay there on a bed. They put stickers on you and you just have to stay still for a couple minutes and it takes like a 30 second clip of your heartbeat and just monitors to make sure it’s alright. That’s like the easiest part of the day, that’s completely stress free. The echo is the next part usually where they put you in a room and they take some sort of an electronic device and they put it against your chest usually and they can see your lungs, how your lungs are functioning, how your heart’s functioning, and stuff like that. That’s also stress free, it’s just sitting there and let them do it that’s the hardest part of the whole echo.

 – Jake, age 21, HLHS


Stress Tests

Alexandra: The doctors ask you if they should pull off the stickers or if you want to, and I always say I want to, because it will probably really hurt. I want to do it by myself. The last time we were here, we found this wipe that you put under the chest sticker when you’re ripping it off and it doesn’t hurt and it makes the sticky part not stick to you. Oh I got to run on a treadmill, I was exhausting after. But I wanted to do the bike that was in there.

Mom: You have to be a little older. This is her cardiology stress test, it was our first one.

Alexandra: Well they say run until you get tired and then they keep on making it steeper and faster.

Mom: And you’re hooked up- weren’t you hooked up?

Alexandra: Yeah.

Mom: Yeah. But we didn’t know it was happening, so we did not wear the right gear, so she did not have on tennis shoes, did you? You did it in your Mary Janes!

Alexandra: It was fun.

Mom: And so she got to come home and you told your sisters that you did something that they’ve never done.

Alexandra: And I also went to camp first.

Mom: Yeah.

Alexandra: My big sister was jealous.

 – Alexandra, age 8, and her mother, Pacemaker


The stress test is not the highlight of anyone’s day. They put you on a bike and they hook you up to a breathing machine and you try to keep your rpm above a certain amount on the bike as you are continually increasing in incline, so it gets harder and harder as you go, and they have you doing breathing tests during the stress test. You go until you can’t. They basically have you just push yourself until you can’t do it anymore, and then you stop. But they monitor your breathing while you do that, they monitor blood pressure, they monitor sat levels, they monitor a lot of stuff for that one. It’s not that bad but it’s definitely not fun.

If you’re stressed out about it- I mean it’s called a stress test, so I guess I could see that. It’s not as bad as you think, but don’t try to push yourself too much. Just try your best. The hardest part is probably the breathing test just because you have so much going on while you’re on the bike. So just relax. Well, try to relax a little bit.

 – Jake, age 21, HLHS



Blood draws and dealing with needles

Mom: Alexandra, do you want to say what happened when you were in the ER? You were really dehydrated and you had to have needles and then who came in?

Alexandra: Oh, a person from Pacemaker camp, a counselor came in!

Mom: One of her Pacemaker camp counselors was a nurse in the ER. It was one of the scary moments because Alexandra needed to get an IV needle, and that woman came in. It helped. She wasn’t even her nurse, but she recognized Alexandra from camp and came in and helped with the needle part. I think she kept your attention while they did the needles. Did she help you feel better?

Alexandra: Yeah. Before they do the needle they use this medicine to numb it. It did hurt still, but not really.

Mom: And then what happened about the needles when we were on the hospital floor? What did you do?

Alexandra: There was a treasure chest and you got to pick a prize after! I got one with a Barbie and then another one. After I went home, we bought more stuff at a store to give to the treasure chest at the hospital.

Mom: It was so meaningful for us, so her sisters and her brought some more toys for others.

 – Alexandra, age 8, and her mother, Pacemaker


Doctor’s appointments

When I see the doctor, they mostly talk to Mommy, but sometimes he talks to me. He asks about what I’m doing in school. Mom asked what activities I could do, if I could go to a different camp with everyone else, like not pacemaker camp, and he said yes. And he told me that I can’t do gymnastics.

 – Alexandra, age 8, and her mother, Pacemaker


Doctor’s appointments feel normal after a while. You go into the room, you’re pretty much there by yourself. The doctor asks like, “Has your chest hurt?” and maybe sometimes it does, but not that much. But mostly it’s my mom talking. He takes my blood pressure and stuff, my EKG, and my echo.

 – Austin, age 10, TOF