With her fourth surgery, it was the first time that pain was ever a big issue for her. Being in the hospital, seeing her in pain, that was really hard, because you would do anything to take their pain away. You could tell she wouldn’t want to move, she wouldn’t want to get out of bed to walk, you could see it on her face if she moved remotely she would grimace. We would try the Tylenol and the Motrin first, and I would try distracting her, but you could just tell by her not wanting to move and by her face that she was in pain, so it was the first time we ever had to say “Hey can she please have something stronger?” So then they would give her the narcotic for pain, and within like a half an hour her whole mood would change. She’d be willing to play a game with you again, she’d be willing to go to the activity room. But prior to that she didn’t want to engage she didn’t want to interact when I brought her brother and sister in, she didn’t even want to talk to them, she would just wasn’t herself. But she wouldn’t ever say, “Mom it hurts” but you could tell in her face and she didn’t even want to move an iota, she didn’t want you to sit on the bed, she just didn’t want to be moved at all until the pain felt better. And then when it did, she would be great and want to move around and do things.
So that was the first time we had to come home and give her a narcotic for pain, which even as a nurse was very scary to me because she’s just, my little baby and when she’s on narcotics I know she’s not going to feel great, it’s going to constipate her, but I need her to be able to be happy and not angry and want to play and walk and talk. But even at home she only needed it for a couple of days and it was mostly at bed time to help her sleep or when she first woke up in the morning. Then it was like a switch or something, and it just didn’t hurt her as much anymore, and the Tylenol and the Motrin were enough or she wouldn’t need it at all.
Since that surgery she tripped over her soccer ball and broke her clavicle and she had an umbilical hernia repair. She is the toughest kid in the whole world. I mean her clavicle was broken in half and she’s not crying, she’s just like “Mom, something’s not right.” That was really painful, super painful. She had a harder time sleeping after a broken clavicle than she did coming home from the hospital after her heart surgery. With the hernia repair she complained of pain then too. As you got older you’re more in tune to pain and not wanting to feel pain, and you know she was definitely more vocal then about, “My belly hurts” and being able to tell us that she was having pain. But she’s still tougher than any one of my other children, and falls down and scrapes both of her knees open bleeding and she’ll get back out and be aggravated that she tripped. She doesn’t ‘crybaby’ about anything. She’s very stoic.
– Erica, mother of Isabelle, age 5, Anomalous Aortic Valve