TABLE 5

I’m Home, Now What: Confidence and Postdischarge Care

Major Themes (Subthemes)Caregiver Quotes
Knowing who to call“Is there a number to call here to talk to somebody? Is there somebody, when you have a question, before you bring them back… just having somebody there to, that you can call without having to … because your pediatrician is just going to say, ‘Go back to the hospital.’”
“If there was a problem like we have with the medicine … and it was not his primary who took care of him … So who do we call?”
“Am I allowed to just call up here [inpatient unit]?”
“Even though he’d been out for 2 months, I always call the NICU and ask questions because we kind of bonded with the nurses right there. So I have them and ask questions like, ‘do you think this is right, should I do this?’”
Bridging the gap: desiring a call or nurse home visit“I would have loved someone to call us. ‘How are you after you left?’ Because they're so caring while you're here.”
“You still want to feel important like, you know, if someone still cares and which can check up on you. And it's usually the surgical team, the nurse the calls the next day. But in this case it was nothing.”
“I mean maybe a nurse from Children's would be a little more helpful... Especially if it was like someone that had seen our child … and like ‘OK, well, hey this is nurse such-and-such, we saw you afternoon of Thursday for our daughter you know, we saw how she was doing, you know, is she…you know, we know she is better, is she kind of showing some of those older symptoms when she first got admitted or is she better?’”
“Yeah everybody should have a [nurse] home visit.”
Caring for a sick child
 (Routine care needs)“You know, that was tough because they had me feed him every 3 hours so I was getting up in the middle of the night. I have to set an alarm… Every 3 hours… I was very restless.”
“He had to take [medicine] every 4 hours, they want me to wake him if he’s asleep… And I was like call him at school and call him at afterschool program every time my alarm went off to make sure that either one he went in when he was supposed to or they let him know that it was time. So I think that was one of the hardest things... I got about 8 alarms set on my phone.”
 (Clinical course)“She was miserable the whole week… My child screaming and I can’t do anything.”
“And here we are today back to square one. His headache came back today… He’s not feeling well again.”
“No she was like not feeling good. She wanted to be up under me, she wanted to be up under me.”
“It’s a fever of 103.5… I had called the paramedics. They rushed us back here… The day after she spent 1 day at home and then we're back.”
Confidence in caring for a sick child“…when you get home, you’re like, OK, now what? Now you finally get in and get settled and you’re like, what are we supposed to do again?”
“The scariest part when you go home, and everybody’s situation is different, depending on the illnesses, for me, it’s at the nighttime, initially. It’s like, all right, what if, my 2-year-old sleeps in her room, it’s like, ‘How do I know she’s having like some episode in her room and can’t breathe?’ And so it’s kind of hard, so we just had someone to sleep with her the first few nights. That was kind of our solution.”
“You’re hovering over him, you just can’t help it. Like, ‘Are you sure you’re OK?’”
“…maybe I need to go to school to be a doctor. I got the machines. I got everything basically what they have here, I have at home. If they’re going to give her steroids and Benadryl and say, OK, I can do that myself. Because I carry around with it in my bag.”