Journeying through Sepsis: Facts about Rehabilitation

Transcript

Dr Sasaka Bandaranayake: When the child moves from the PICU unit to the ward, this is the next stage of their recovery process. It means that they are medically stable, to go into an environment where they're not monitored as much and their nursing care is reduced, but they still have significant medical issues, ongoing.

Marissa Ryan: Sabella spent three weeks in ICU and, it's almost a little bit daunting when you've had so much one on one care. Going back to that ward setting can be really daunting as well when you don't just have your own nurse there with you all the time.

Amy Wilkinson: You go from this, I guess, safety blanket of someone always watching Mia to then moving toward where there's, you know, they come in, like Mia was, had her obs done, I think every hour, like she's still very, very unwell. Twenty different departments that would come in and it's a revolving door, like people just come in and you know, like it's, there's no privacy in hospital. It's a really hard shift if you've never experienced hospital before. That was challenging.

Shail Maharaj: You've gone from a very different environment in the ICU and, all of your mindset is around, survival and some dire things and you get to the ward and families do need to, be aware of that transition and how that can feel for them, from a perspective of, what's important, and for families, I tend to think of it like needing to change gears. And so, you know, not many people drive manual cars these days. But I think it is a good example where you have to put the clutch in and then take a bit of time to change gears and slowly release the clutch so that you can understand that you are in a different phase now.

Amy Wilkinson: Nurses aren't with you all the time, so you are... You know, you having to watch your child, I felt the pressure then to then, you know, take on a nursing role and watch Mia and really strongly advocate for her and ring the bell to get a nurse in if I thought something was wrong. So I think a bit of, you then go into taking a bit of pressure to be a very strong advocate for your child in wards which is challenging. I think it's just part of the journey.

Shail Maharaj: So it's normal for parents to feel lost when they, when they first come because they don't know what the next steps are and it's hard to get answers. And so, you know, how long am I going to be here? What will happen for my child? Some of those questions we can't answer right at the beginning. And the answers we can give is, as we get to know your child and where they're at, we'll be working on, on like weekly goals or priorities that you have. So that we can work together on what those next steps are.

Dr Sasaka Bandaranayake: The overarching goal of rehab is to regain as much function as possible following the sepsis and also to reintegrate that child back into their home, school and family life. And that might take It's, it's very different from each child depending on the severity of the, the illness and how it's affected their body, which it often does in multiple ways.

Marissa Ryan: There's such baby steps in rehab and you just don't realise the impact that it has until you're there. You know, it's probably taken about two years, I think, for Sabella to get well. You know, it did take about two years to get to back to where we, you know, emotionally, that she was great and, that she had, you know, decent strength in her hand again. And she's adapted to how she does things, too.

Shail Maharaj: So for a family with a child with sepsis and when they come into rehab, they'll be surrounded by a substantial team.

So you've got your doctors and your nurses, so your rehab specialists and the like, and the rehab nurses that are on the ward. And on top of that, there's a multidisciplinary team that, will be part of that team, and that can include physios, OTs, social workers, music therapists, speech pathologists, dieticians. We've got allied health assistants that help us within the therapy sessions that we run. The thing is that we work together. And that team, works to support each other and support the child and family get through what's a really challenging time in life.

Amy Wilkinson: Rehab's slow. It's not going to happen overnight. It is a journey. And like Mia's three years on now from being, when she got ill and she's doing amazingly well in her legs. But it's, it's really taken a good two and a half years I'd say for her to get going in legs like what she is now and have that confidence and that leg, you know, the muscle strength to do it and the balance. You know, it does take a while for it to all to come together.

Shail Maharaj: So early in that transition to rehab one of the things we want to do is get to know the child and family, and there's different ways we do that. And so rapport building's really important. We want to know what, what are the likes, what the child likes and, and what they don't like. And, and they tend to realise the things I don't like. 'cause I tell them like, jelly, I don't like jelly. And they all seem to remember that. But we want to know what the child, what their interests are, what about the interests of the family as a whole, their siblings. It's a real time where we're getting to know the child and family.

Sabella Ryan: At the start of the year, I made like this netball team that I wanted to make for like a couple of years. And so I said like, the whole time, can I go back to play netball? And so that was my goal, to be able to play netball and touch again.

Amy Wilkinson: Whether it be in a, you know, rehab hospital environment or outside in the community, it, for me, it just has to be play based. And the rehab is part of that. It's not like an adult can go in, okay, my rehab's to lift these weights. Kids, that's never gonna work. You have rehab in a, you know, you have physio sessions in a park.

Dr Sasaka Bandaranayake: The family is the child's expert and so they know the most about the child. They know what motivates the child. They know the child will be likely wanting to do when they get home from hospital. So, we use that information to set goals on a weekly basis.

Amy Wilkinson: I remember, like, when she first got legs, and I just thought, there's no way. It's like having a toddler again, and you're just there. You know, there's no way she's going to be able to independently walk upstairs, or walk downstairs. You know, I'll just always be worried that I've got to catch, catch her because she's going to fall. Yeah, and then her strength built and... And you go, oh my god, I can't believe Pete and I are sitting down watching all three kids play in a park. Where she is now to what I thought was possible three years ago is, I would not have believed it.

Dr Sasaka Bandaranayake: Rehabilitation can go for days and days and seem never ending at times. Some days will be better than others. The important thing is to keep on going and to have breaks when you need it. That goes for the child, but also for the family and the carers. There are going to be days where you feel like you're on top of the world, and there are days that you're going to feel down in the dumps. And that's okay. That's natural. It's important to acknowledge those feelings and to talk about those feelings, with people that you trust.