Alice: It started out being very hard. I remember when he came home six months after his Glenn, we had to start giving him shots to keep him from forming blood clots, and those are twice daily shots, and the needle is like a diabetic needle, but the medicine burns and it’s painful if you ask an adult who’s had them. I do them myself, I did it a couple of times and just me inflicting that pain on him was—Allan had to take that over, and then I felt guilty that I couldn’t do it.
Allan: I mean, when he came home from the hospital after six months, he had an NG tube, and for a good six months, and we probably replaced 100 of them. So we learned to do it ourselves because every single time, almost 2-3 times a week, we’re not going to drive all the way to have them put it in, because then they’re going to want to send it to radiology, and then it’s just going to be a whole process, so we had to learn how to do that.
Alice: That was terrifying at first too. As he’s getting older, he knows how to say “No” now, and he knows how to say “Scared”, and that’s what he says. Some of it, like the infusions, he’s been doing them for a year now, he knows the drill. He knows on Sunday morning he sits in his little chair, he gets to watch TV for two and a half hours, and we do the infusion, and we do things like, “Okay, we’re going to count to ten, and by ten the needle is going to be in, we’re going to have the Band-Aid on.” And I think the structure of knowing what to expect and how to expect it has helped him and I think us doing it makes him feel safer. First we had a nurse come to teach us how to do it, and it’s scary having a stranger. So as much as it pains Allan and I to be the ones to do all these terrible things to him, I think it makes him more comfortable because ultimately he knows we love him and we’re just trying to protect him. His brother even knows how to help with things.
Allan: He’s a mini-therapist.
Alice: He’ll sing him songs, kiss where the shot was, hold his hand for things.
Allan: Helps feeding therapy, and everything else.
Alice: So I think he is starting to get that we’re all here to support him. It’s hard too because he’s developmentally delayed, so he doesn’t have the language to really express to us how he is feeling. “Scared”—he has that word, but that’s it, he can’t elaborate on it or say what helps him or doesn’t help him. He can’t tell us if something hurts really.
Allan: But he understands every single thing that you tell him.
Alice: Yeah, I would say for other parents having to do those types of things, it sucks. It’s scary, you hate to do it, but you get used to it. There’s no sugar coating it, I guess.
– Alice and Allan, parents of Zach, age 3, Single Ventricle
Nick: They taught her how to sit up, and lay in the bed certain ways. She actually coped with pain pretty good.
Shana: Because she likes medicine.
Jade: I don’t like medicine!
Nick: Not anymore
Jade: Some medicine tastes like there’s pee in there.
Nick: You always say that. But it’s just here in the later years that it’s gotten like that. I would say until she was about four, they didn’t have any issues administering anything to her. I can remember coming to the hospital early mornings and not finding her. The nurses had taken her and she was just like doing rounds with them, the nurses and the doctors. She was fine.
– Nick and Shana, parents of Jade, age 6, Dextrocardia
When she was born she was taking Propranolol, she was on it four times a day, that was for two years, and then after that she was on it three times a day until she was five—she’s always had to take some medications. We’ve never had any pushback really in terms of taking medication, it’s just been part of what she needs to do.
She started being somewhat resistant to that last year, before she had her episodes last summer, but now she knows she needs to take her medication. We tried to explain the physiology, the “why it is important to” at that point. She’d never had any problems, any cardiac problems, but so she has had seizures because of hypoglycemia, which is actually caused by the medicine that she’s taking. There was some pushback because of that. Until that summer, the only effect of the medicine that she had experienced was having seizures, so the medicine hadn’t helped her at that point. We just tried to explain how the electrical system works and why she was taking it.
I think our medical backgrounds are helpful in that we understand the biology, the physiology aspect of it, so I understand very well that taking medication consistently is essential and that it’s not okay to miss doses. Talking to other people, sometimes I’m surprised that people don’t really understand how drugs work, so maybe they’re not as consistent as they should be. But the beta blockers inhibiting those receptors, your body is going to naturally grow accustomed to the medication, so if you don’t take your medication, it’s actually worse than never taking it. I think that understanding is helpful.
– Catharine, mother of Willow, age 8, Long QT Syndrome
Chloe is very, very determined. Prior to hospital, our routine every night was I would read to her, and then she would read to me. She was only six, they were children’s books. So when she was making a little bit of recovery, we’re like, “Let’s do that.” So I’m reading a story to her, I give her the book to continue, she picks the book up, opens it upside-down, puts it down and says, “I don’t feel like reading.” She’s just realized at that point that she can no longer read or recognize which way a book is held. Up to that point, she didn’t know she could no longer read. So there was a lot of things that came up afterwards, things like that she couldn’t read, finding words, she would use a different word, she would put a different word in place, and even to this day, you have to give her time when she’s telling you something. If she gets so frustrated with it, she’ll stop telling you. So I’ll ask her a question and she’ll go, “Oh no, it doesn’t matter” and I’ll say, “Well, actually it does, I need to know what the answer is.”
So I let her give me pieces of information as she can. She can’t always string it together, but she can give me snippets of information that then you sort together. So she still has that, and her short term memory- she’s very aware that it’s lacking, and we make a joke about it, I say “You have no short term memory because you had a cardiac arrest, I have no short term memory because I’m old and it’s gone.” So we make lists on everything we do, and as long as we can remember to take the lists with us, we’re good. We try to remember to hang things on the front door if we need to take something.
She takes medication twice a day, morning and night, nighttime medication isn’t a problem, we never ever forget that. Morning medication, I could be driving her to school and all of a sudden it’s, “Oh, sugar, I forgot to give you your medication, let’s drive back and get it.” So we started this thing now that as soon as one of us remembers, we put it on the kitchen table, so that before we leave, we know that the medication has to be taken. So, I play into my own memory loss to encourage her and to let her know that it’s okay. My memory’s not that bad, but I kind of wanted her to know, “Yeah, it’s okay. So you don’t have great short term memory, that’s okay. There’s things you can do to deal with that.”
– Jim, father of Chloe, age 13, CPVT
He’s now on a diuretic, he’s on Coumadin for the rest of his life—it’s just tough. Because he just wanted to be a normal teenager and he wasn’t. He didn’t look good, he’s just constantly taking these meds, and obviously when we first came home I was overwhelmed by, “oh my God, how am I ever going to get to know this.” And he was still young enough that I was dispensing the meds. Now he does his own pill box and takes the pills. He’s at college now, I’d say he probably misses maybe three doses a week, just cause he’s not good about it and it’s an ongoing conversation with his doctor and nurse. Again, now he’s not even a teenager, but he just wants to be a normal person. And other people, they have to take meds, they take them in the morning, they take them in the evening, their more conscious of the fact, “I’ve gotta take these meds.” Gabriel, he doesn’t take them and then he says, “well I’m fine,” but then sometimes, he doesn’t take the Lasix and then the next day he feels like all puffy and it’s because he didn’t take it.
When he first went back to school after that surgery, he was taking the diuretic twice a day, morning and afternoon and it was a disaster because he had to go pee every like 15 minutes. So he’d excuse himself out of class, so he was missing class time. I talked to his doctor about him just taking a double dose in the afternoon when he got home, so that’s what he does. But even then, this past week, when he goes out with his friends, he doesn’t want to go out with them and then have to go pee. They want to go out to a movie, they want to go out to dinner, they want to go to the mall, and the last thing he wants it to have to go find the bathroom in the mall every 20 minutes. So sometimes he comes home at 11 o’clock, and then he takes the diuretics or he skips it, so it’s not good.
But the Coumadin is okay, because he’s got his own home monitor, so he tests his own blood every couple of weeks. I usually have to harass him because he’ll forget—if they tell him to do it on a Monday, he’ll usually get around to it by Wednesday. But if they have to tweak the dose, they do, that part has worked okay. It’s really more getting him to take the pills and then just the hassle of the diuretics. His doctor has tried to scale back the dose, and it just hasn’t worked. It just builds up the fluid. It just kind of stinks. It’s one thing when your old to have to take pills, a lot of old people, God bless them, just don’t. How many teenagers, early 20’s kids do you know that have to use a pill box filled with like 9 different meds. It just really stinks.
– Louisa, mother of Gabriel, age 20, HLHS