Journeying through Sepsis: Support during the early stages of admission

Transcript

Sabella Ryan: About three years ago I was swinging into a river and fell off the swing and hit the bank and broke both my arms and one arm was a compound which means the bone has come out of the skin. So I spent five days in hospital and then we were transferred to QCH, where we spent six months there.

Marissa Ryan: From a personal point of view, I've never felt so terrified in my life. That feeling of I would almost, like a panic attack. I'd never had a panic attack until I got to the point where I was really, really anxious about Sabella and how unwell she was. So I'd never seen her that unwell before and I knew she wasn't getting better. And everyone telling you that it's going to be okay, that it's going to be okay. And you have that feeling of dread that it's actually not going to be okay, you know.

Tiffany Ritchie: It's all a bit of a blur because we were heightened emotionally given that our son was so sick to start with and we, he was taken away, for an operation that he, we thought was just for his appendix. So we didn't know how sick he was and yet when they said septic, I have no idea what that was. It wasn't until later that we went through the whole process and we were able to take a bit of the emotion away and calm down a bit that we understood what it was and how sick our child actually was. So, it's terrifying hearing that.

Amy Wilkinson: Like, I'm sure they said the word sepsis, but that wouldn't have sunk in that time. We, we were just in survival. Like, as parents, you're just, you're not sleeping, you're not eating, you're just in shock and panic of, just in hope. That your child will survive. Yeah.

Meagan O'Keefe: Families are often experiencing quite a range of emotions when their child comes into the Paediatric Intensive Care Unit. They're often quite scared and confused and can feel really isolated. A big part of what my role is as a social worker is to really normalise what they're experiencing. So let them know that any, any range of that emotion, it's to be expected.

This is outside of any type of norm that they've ever experienced. Everything that they've learnt about their world and trusted about their world has kind of flipped upside down. And everything that they once wanted might use to cope with things might no longer be working. So our role is really to get to know these families inside and out and understand how we can best support them but how they can also tap into their own natural ways of coping, to get through this day by day.

So a big thing that we will talk to families about from the get go is a thing that we refer to as self care and it's that really basic things around. Eating whenever you can, getting fresh air whenever you can, and relying on supports that are available to you, be that friends, family, social worker, or other members of your child's team in the hospital.

Tiffany Ritchie: To cope, you have to make sure that you're looking after yourself in order to be able to look after somebody else, and when he is in, when he was in PICU the doctors and nurses were looking after him. So as much as I wanted to be there 24 seven, you have to make sure that you're eating, that you're getting some sleep.

Even if it's not much, you have to close your eyes and just switch off for half an hour, an hour, a couple of hours, anything, go for a walk outside. There's that outdoor area at PICU. Go out, get some fresh air because you forget what outside is like because you are so focused on your child and what is going on with them.

And you have to rely on other people. Regardless of who that is, whether it's your partner, whether it's your parents, whether it's your sister, brother, you have to be able to just get on the phone and say, this is what's going on, so. You can't shut off completely. You have to look after yourself.

Marissa Ryan: So we are a Christian family and so we did make use of the chaplaincy service. You know, in I C U, the priest did come to see Sabella. I did some counselling through when Sabella was having some, you know, the psychologist used to visit Sabella and used to spend some time with me as well, and Peter never wanted to talk to anybody.

He did, as part of the sepsis program, he did, speak with one of the social workers and he actually found it really, really beneficial to actually talk to someone about the experience.

Cindy Martin: If I had to go back to them down the hospital, I wish I took someone with me to be my person, to be me. That took the emotional mum side out of stuff to help process it all. Because there's a lot of stuff that I'm looking back and going, oh did they say that? Did they say that? Did they say that?

Meagan O'Keefe: You find that you can't process information how you usually would, that things aren't making sense, that your memory's not working how it usually would, and so that's where we would really encourage you to Talk regularly with your nurses, talk regularly with your doctors and your social workers and other members of your child's team.

It doesn't matter if you ask that same question 24 times within the hour, we're really used to that. Some really practical things that I would encourage families to do is to keep a notebook or just pop notes in your phone as questions come up, usually at the 3am in the morning.

Marissa Ryan: I had it all categorised on what teams were coming, who were the names of those doctors, what order they were in, who was the consultant, who was the registrar, and so because you're seeing multiple people in a day and so yeah, absolutely keeping, and that was all in my phone.

Meagan O'Keefe: Another really helpful thing that you can do is ask to meet with your social worker before a family meeting. That way you can have a conversation with them around where you're at, what your understanding is, and maybe what some really helpful things might be for the team to talk about in the family meeting.

That way if you get into the family meeting and it all just becomes a little bit too much, which it can because it can be really overwhelming hearing that information and having all those people sitting in there with you, your social worker can help you to ask those questions.

Marissa Ryan: As an advocate and a parent and a carer, you need to keep on asking questions, keep on being the advocate that you need to be, you know, and encourage you just to be brave.

Your child or someone that you care for is deteriorating and you don't feel that they're getting the care that they need. That Ryan's Rule is always going to be your backup plan and, don't be afraid to use it. It's there to support you and it's, it's a quality assurance thing and, and in Sabella's case it worked really well. It got her into theatre when she needed to be and, you know, so I really am thankful for Ryan's Rule.

Meagan O'Keefe: There's also a peer mentor program available to families where you can actually link in with other family members who have had a child experience sepsis and would really encourage you to talk to your social worker if you'd like to hear more about this.

Amy Wilkinson: There's very strong emotions in the beginning obviously of, you know, it's like hope, you know, uncertainty, fear, panic, and it's just it's normal. You just got to ride it. There's no quick fix, you just keep thinking, how am I going to get through it or, you know, you just got to wait, you know, know that there's going to be ups and downs, I think.

Meagan O'Keefe: Whatever it is that's causing you stress, be it here within the hospital or outside of the hospital back at home, you have a whole team around you to support you through it. Please just talk to us about it and we'll be there to help.