Journeying through Sepsis: Support for preparing for discharge

Transcript

Alana English: Just like potentially when you made the transition from the paediatric intensive care unit to the ward, the transition from the ward to discharge home is a really interesting mix of both excitement and fear for a lot of families. It's very normal and understandable to feel this mix of emotions and it's okay to express those emotions to other people, to not feel like you necessarily just have to talk about the fact that you're excited about going home.

Amy Wilkinson: The last time Mia was home, she was obviously well. Healthy and well and full, you know, had her arms and everything. And so we're returning with this child who, she still couldn't move around. She's, you know, we set up a bed in the lounge room, so then she could be there and watch TV and be part of the family. Like we had to lift her and move her around.

That's just a, a huge change from what life was before. So you're returning home, but you're not returning back to your life, or what it was. It's completely changed. How will the other kids take that? You know, then you've also got the pull of looking after Mia, but you've got the pull of looking after two other children as well, and, and still keeping family support and having my parents still there because we needed them there, but you, your house and your house becomes a revolving door of people coming, you know, and It's not your home really anymore. It feels a bit, so that's really challenging.

Alana English: So there's understandable grief and adjustment that comes with that. Grief and adjustment for your child, for their siblings who might expect them to be the same and also for you as their parents. It's important to take some time to process all these feelings and to give yourself some time to adjust.

Marissa Ryan: And the toll it takes on your other children and your relationship with your partner, all of that, you know, that's taken us a number of years to work through.

I don't do it so much now, but, particularly when I'm alone in the car by myself, I just would just spontaneously, you know, start crying or sobbing, and you know, I do fewer and fewer of that, you know, less and less of that now.

Alana English: To access psychological support does not mean that you're not coping or that there's something wrong with you. It's about really acknowledging and processing all that you've been through. What we find is that families put a lot of that aside during the hospital admission because you need to. There's lots of stuff to get done. There's lots of things to focus on. You're very actively involved in your child's rehab and so the emotional stuff gets put aside and that it often really impacts you when you go home. So that's why it's appropriate at that point in time to link in with good community supports who can help you at that time.

Amy Wilkinson: Three years on, I'm still, you know, some days, yep, off we go, this is normal life, it's all fine. And then other days it's like, oh, today's a sad day. It's just, and just, I think I've just learned, that's it, that's it, today's a sad day, go with it. Because fighting it, you know, then you're questioning, I shouldn't be sad, or I shouldn't be this, or whatever it is. It's just what it is. And then tomorrow you're not gonna be, it's not gonna be a sad day. It's just, it's how I, how I'm quite an emotional person now, even more so. So you just try and ride with it and find support or a counsellor if you need or a good GP, you know, family members, you know, or support. It could be another family across the world who's been through sepsis as well. I've got, you know, I've met people all around the world who lost children with sepsis or have amputations, with children amputations. So yeah, I find I'll touch base with them when I need to.

Marissa Ryan: I don't know where we'd be without, our friends and family and the support of Emerald community, really. They all got behind Sabella and, you know, we're amazing.

Sabella Ryan: Obviously when you come back to home, you want to have those friendship groups as well. Like, you don't want to have to make new friends or something, because obviously that's really hard. And like with, like you've been through so much, so you don't want to have to make new friends on top of that. And so being with people that, like, know what you've been through is a lot easier. So it's really important to stay in touch with them.

Alana English: I would strongly encourage you to decide what you want from others, and to set up those expectations with your family and friends. It's okay to say to family and friends that you're not able to have a conversation with them, or you're not interested in going over a particular issue, or you don't want to tell the story again, or if you do want to tell the story and you do want to share with them what's been happening, just tell them that as well. You set up the framework of what you want to talk about with family and friends.

Marissa Ryan: Sabella seemed to bounce back a lot quicker than what I did, actually. And she just got on with it, really. And even though she still came home on pain medications and, you know, lots of dressings and, and Sabella still has a lot of impacts. Moving forward, you know, I guess, I've always will have fears around her immune system being on hyper alert, since sepsis and her vulnerability to sepsis increasing in the future, you know, and that's, that's something that we're finding with sepsis.

Alana English: As a parent, it's understandable that you're going to be very hyper vigilant to any ongoing medical needs of your child. That makes sense. Don't think that you're overreacting if you feel like you need to take your child to see the GP at another point in time. Particularly as you're progressing in those latter stages of their admission and through to discharge, the most important thing for your child is normalcy. So they will actually expect and anticipate that you return to your usual parenting style. That will help them to re establish a sense of routine. It'll also help them to establish a real sense of their own identity again in terms of who they are in the family. It's important because it also acknowledges that the child is more than their illness at that point in time. That you're recognising all the traits of their personality and potentially now some new challenging traits of their personality and you're helping them to actually readjust and to adjust back into usual family routines.

Amy Wilkinson: I think from when Mia was first sick and, and there's just absolute grief and loss and you, I just remember thinking, you know, no one's going to play with Mia. Who's going to want to play? You know, she won't be able to do what the other kids can do at school. Like she's going to have no friends, but she doesn't, you I just think she's because of who she is, obviously.

When you first meet Mia, it's very curious, especially other kids, but once you know her, like, she's just Mia. You, people don't, you don't see it. It's very interesting how very quickly... You see the person that they are and just enjoy them for who they are. So she's, you know, like she's where she is now to what I thought was possible three years ago is, I would not have believed it. I would not have believed that she had such an amazing class of friends at school who just love her for who she is. And that's why they love her because of who she is. Not, not because she's an amputee or she needs extra help or anything. They just see Mia.