Alexandra: I had to stay when I had pneumonia- we got to watch shows and movies and there was this person who came in and she gave you art materials and she asked you what you wanted to do. She had like stickers and you could draw and just do other stuff.
Mom: At one point they were worried that the pneumonia might affect her pacemaker and that they were going to have to take out it, because diseases can potentially attach to plastic I guess. So we were put on the cardiac ward because of that. So we were the cardiac patients without a current cardiac problem!
Alexandra: I mostly watched movies and shows, and there was this show, Mickey Mouse that I watched a lot of. Oh and I ate a lot of bacon and sausage! There was this person who brought in- you could order breakfast, lunch, and dinner.
Mom: She had pneumonia and she couldn’t eat or drink and all she would eat was bacon.
Alexandra: And sausage.
Mom: And sausage. So I think we ordered breakfast at every meal, because you can do that!
– Alexandra, age 8, and her mother, Pacemaker
It was good. I think I was asleep for like an hour after the procedure, and then I woke up and you’re supposed to be really cold, and I was super hot, so I had like frozen yogurt, and I was watching my favorite TV show. I was overly hot, like super, super hot. I asked for a bucket of ice to be dumped on me after the procedure! I made my dad be my waitress and I made him go get me some frozen yogurt from downstairs.
– Emma, age 9, SVT
Well, staying overnight, it’s kind of like—you wake up a lot. You’ll be really tired but you’re always tired during the day so you don’t really realize it. It’ll be three o’clock and 12 o’clock and you’ll think it’s the same time until you actually wake up at three o’clock. You can’t get it, but your parents can go down and get you something from the cafeteria. I was there last year. Almost exactly a year ago actually. I had a catheterization. I stayed for one night. I do it every couple of years.
I like to go to the playroom and do stuff. I used to like it more when I was younger. I usually will bring my iPod. On one hand you have an oxygen thing with the little thing on your finger so you can’t really use that one and on the other hand you have an IV. I’d say to probably bring any electronics you have, probably a book, a light—it’s kind of hard to see, and you might need somebody to flip the pages. And your own pillow.
– Austin, age 10, TOF
Leah: When I went to the hospital I was scared because I didn’t know what was going to happen.
Donna: What did you do to help take your mind off of it? Do you remember?
Leah: No
Donna: We would watch movies, and go to the playroom, and we’d go outside. Outside was a good escape for us to get some outside fresh air. And for me, there were a few times where they had massage therapists come and give massages to the parents and that helped. Coffee hour on 8 East, with other families too was a nice break.
Nathan: I’d go for a run, like run around the city just to exercise and get out.
– Leah, age 10, and her parents, HLHS
Sierra: I remember when I was in the ICU there were little wires that were put in me that they had to pull out.
Dad: It was kind of funny, we would always count down all the attachments. You know when you are in the ICU you have like 22 sticking in you and when you get out of the ICU you only have like five. The last two are called pacing wires. I think they monitor your heart electric signal, I forget where in your chest. What did they do with those?
Sierra: They had to pull those out like the chest tubes, but it didn’t hurt as much but I still don’t like to get them.
Dad: They are smaller, they are like little thin wires maybe a millimeter wide. They are always like, “Oh this won’t hurt at all” but it’s got to be a weird feeling. It’s just all those extra things, some of those IV’s in your neck and in your foot. The actual surgery itself is not the issue really. When you are awake and you have all these bits and pieces on you, that is the most scary. But I think in general it all went very smooth. The whole team down there is amazing at what they do, and it’s well choreographed. From the ICU and how they transfer the shift nurses. It is just amazing how they do it. The surgeons stop by like twice a day. You know, it is almost you want to say, “don’t stop by and get some sleep!” They stop by in the morning before they do two surgeries, then they stop in at night after their surgeries. It is a 16 hour day and just the amount of care that they put into it, the surgeon is done at that point but they are still stopping by which is a good feeling.
– Sierra, age 13, and her father, Anomalous Aortic Valve