Sepsis family experiences

Dr. Paula Lister: Sepsis it's relatively common. So we see about 450 children admitted to intensive cares across Queensland every year. Sepsis is a tricky condition because it starts off as a common infection, which many children have throughout their lives. But it deteriorates and the body's response to that infection, the immunity response is such that it starts to attack its own organs and then they start to malfunction.

And that is a quick spiral into real, real sickness and real critically ill children. And we need to jump in quickly with therapy to try and turn that around.

It can be very quick, so that's often what parents tell you is that they, they just can't believe how quickly it's happened. It can be a matter of hours from a child being relatively well at home Probably taking some fluid to being in intensive care on a ventilator literally four or five hours later.

Amanda Harley: So sepsis is difficult to diagnose in the early stages and that is the challenge for clinicians. That's where you as a parent are really important because you know your child best and you know how they've been unwell in the past. And you might think that this illness is a little bit different.

Dr. Paula Lister: It's actually mainly a clinical diagnosis, so you need an experienced doctor or nurse to have a good look at the child and they pull together a constellation of signs and symptoms and those are, the symptoms are often of having had a fever, having been unwell with some sort of infection, whether it's a cough, cold, scratch from a cat, something like that.

Then a history from the parents that This isn't like any other kind of infection that they've had before. Something about this is different. They're more unwell. They're not responding to treatment. The experience is different this time. As well as clinician coming in and looking at very fast heart rate.

So if you feel them, they feel. Like they've got cold hands and feet. Sometimes they can present with a rash, particularly a rash that doesn't go away if you do a glass test which is pushing a glass to skinto see if it goes away. Sometimes they can be breathing really quite fast and in small babies, if it goes really slow, that's also a problem that we worry about.

We look at the urine output, looking at the kidney functions, but also at the brain, which is the most important thing. And these children are often lethargic, don't want to feed, irritable and different than usual.

Amanda Harley: And I like to think of sepsis as a puzzle. It's not just one piece. It's not just one picture. It's multiple pieces of the puzzle that together can help a clinician diagnose sepsis. So it's also important to remember that sepsis affects every child differently. And this is unpredictable. So you might be admitted to the intensive care unit. Your child might be on a breathing machine or that you might be on the ward being treated with some antibiotics for a few days. Your child may even be discharged in a couple of days time. So it affects everyone differently and no journey is exactly the same.

We're aware that only 14 percent of Australians have actually heard of sepsis, so you're not alone. And we're really working on improving awareness in the community. So what we do know about paediatric sepsis is early recognition and a quick diagnosis and subsequent early treatment is really important for your child. Here in Queensland we're leading multiple research studies that's going to impact practice in Queensland, Australia and also internationally.

So you can be reassured that there's many ways that we're looking into recognising and treating your child to deliver the best care here in Queensland.

Amy Wilkinson: I had never heard about sepsis before Mia got ill. We, you know, we knew she was sick, but obviously not critically sick. And then it just escalated extremely quickly from that Sunday, evening. And she was rushed into ICU within a matter of hours that she presented that evening and was on life support. So it just happened so fast from diagnosis of flu or gastro to on life support.

Dr. Paula Lister: It can be very quick. So it's often what parents tell you is that they just can't believe how quickly it's happened. It can be a matter of hours from a child being relatively well at home, probably taking some fluid to being in intensive care on a ventilator literally four or five hours later.

A child will come to ICU in order for us to, to support their failing organs in order to, to help them to recover. The most common organ involvement is often the lungs and the cardiovascular system. So the lungs often we will need to pop a child off to sleep with an anaesthetic, put a breathing tube down through their mouth into their lungs, and then we attach them to a ventilator, and the ventilator does all the hard work for them.

We use pain relief and sedation, to make sure that the child has no knowledge of it or recollection of what's happening and also doesn't feel any pain while it's happening. So comfort is right up there and very important to us. So all of the therapies that we do in intensive care are supporting the lungs to get oxygen travelling around the body, supporting the cardiovascular system to keep that blood pressure going, taking oxygen to the brain, preventing brain injury, helping the kidneys, watching the kidneys. If the kidneys are injured, using another machine to do their job in the meantime. And watching some of the other organs like the liver and so on. So these are all interventions that the teams do to try and keep everything steady and stable. And whilst we're supporting all those organs, as they start to recover, we can start reducing our support. And the baby starts, or the child starts to do more of its own work, and we reduce our support, and they do more. So we can see that corner when it comes. You know, we'll be able to tell the parents that actually we're now in a slightly better position than we were a bit earlier.

So if a child falls ill in Queensland, there are really only a very few ICUs that they can be treated in. So it very often requires a retrieval team to move them to the intensive care unit. But as soon as that referral is made, the local team is in contact with the intensive care team and they're getting advice the whole way through and we have standardised the way we give out medications and the way our nurses work so that we can support those local teams to deliver the intensive care that is needed at the time. That's not always something that the parents see because that kind of happens away from them on a on a phone call that they don't necessarily see that communication. So when they're at the bedside, they can be sitting there thinking, why am I waiting so long?

Cindy Martin: A conference call, and then that's when they said they had to fly to Brisbane. And I went, okay, no problems. They told me, yep, you can go with him, you can go with him. And then as soon as the helicopter landed, because there was an emergency somewhere else, they only had a, small helicopter and I couldn't go with him.

So he left at six o'clock at night. I ran to the airport here. They shut, because they had no one on the flight. So... Yeah, he had to go in the helicopter by himself to Brisbane, and I met him there at nine o'clock in the morning. But I knew that we had to have doctors there. I knew we had to have the paediatricians in there.

We, that's just how it was, but it wasn't easy. They did the lump of puncture on him, they had to wait till I got there, of course, and that come back straight away that he had. The strep nasal cochlea meningitis. I think it was B that he had. But that morning, within hours, he just went from a happy little boy, it's like he went into a coma kind of state.

Amanda Harley: Pathways streamlines care, so whether you're in Brisbane, you're in Mackay, you're in Roma, this has been developed and distributed throughout the state of Queensland, so we're all following the same playbook. We all obviously know we need to tailor care to the individual patient, but we've got these key steps and these key criteria that will really increase the ability for clinicians to recognise and manage early.

Dr. Paula Lister: I think it's, it's really important to remember that the team that are working in the hospital are experts in sepsis. They know what to do for children who have sepsis, but they're not an expert in your child. So that's important that you bring us all the knowledge and expertise you have in your child. It's really important that we work together.

Amanda Harley: So just like sepsis affecting your child and it versus another child very, very differently. Parents responses to sepsis and having this diagnosis for their child definitely varies as well. And that's completely normal. As humans, we all respond to things very differently.

You may have heard of sepsis before, but didn't know it affected children. You may not have heard of sepsis before. So we are really here to support you through this process. We understand that it can be challenging and difficult. And we understand that you might not remember anything that's happened in the last 24 hours.

That is completely okay. So please ask us for any information that you may require, any resources, and we can definitely point you in the direction to get as much knowledge as you can.

Dr. Paula Lister: I've learned over the years that no two parents will react in the same way. So some parents want all the information, keep a note of all the monitors and all over it, whereas other parents are crying and can't take in any information at all. Some parents don't even talk. They don't respond at all. They're completely numb. I've had other parents that can't come in. They just stay out the room because they can't bear to see it. And that's all normal. That's all within the range of an absolute stress response to what for the parents is catastrophic, and we need to, as clinicians, support them with that.

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.

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.

Amy Wilkinson: The sepsis journey is a very emotional one, like any illness. But it's a journey I've been on, so, and it was so sudden, there's, it's just a roller coaster.

Alana English: The first thing to remember is that it's a marathon, not a sprint. So being in hospital for a lengthy period of time, you need to develop some strategies to sustain yourself and the rest of your family over a lengthy period of time.

And so it's really important to maintain your own self care during that time. Now lots of families when I talk about self care will say that I'm being a bit hippy or a bit strange or, but really that's a really essential part of looking after yourself. And I like to explain to families that, because they can often relate to it, most of us have been on a plane, and on a plane they give you the safety instruction at the beginning of the flight, that in the case of an emergency, an oxygen mask will fall from above, and you need to ensure that as a parent you fit that oxygen mask to yourself before you fit it to your child. The reality of that is, if you don't, potentially you pass out before you're able to fit it to your child. It's the same analogy here, and you really have to think about it like this. If you don't look after yourself while your child is in hospital, you are not capable of looking after your child.

The other thing about when you come to the rehab phase is that often people find that emotions are significantly heightened and they potentially find this strange. I've had a lot of families talk to me about the fact that they actually feel like they're going a bit crazy because they become more distressed and more worried when their child's on the ward and concerned that potentially it is a strange reaction to have when their child's actually starting to feel better. I'd like to explain to parents that it's actually an understandable reaction because of the abating of that crisis response. You actually have a reaction within your body where all the emotions that you've potentially been storing up for a number of weeks while your child's been in the ICU is now actually currently being experienced. And it's okay to feel those feelings and to have an opportunity to process them.

Some strategies that I would suggest to parents and families in terms of managing their own self care. Firstly, the basics. It's managing eating, sleeping, exercising, and all of these things like I fully acknowledge that when your child's been very unwell and in hospital, you don't want to think about prioritising your own self care and your own needs, but it's really, really important to maintain these basics.

It's a difficult environment to sleep in. It's difficult to get a full night's sleep. So I'd strongly encourage families where you can try and take turns with another family member to either sleep in local accommodation or to go home every other night. So that you actually get a decent night's sleep.

And to exercise. Whilst parents think that they don't want to leave their child's bedside for even five minutes, I can guarantee you that if you were to leave the room, walk outside for ten minutes of fresh air, the rest of the day will pan out so much better for both of you.

Tiffany Ritchie: During the rehab phase, when we were in the ward, it was really important for me to keep active given that I lead an active lifestyle, so does his father. So we made sure that we went for walks to get fresh air. We'd walk around Kangaroo Point up to the stairs and back, just even if it was for a 15 minute, 20 minute walk, just to get out to clear your head. Mind never leaves your child, but you are just taking a breath, just to refocus. And for me in my normal life, that's so important. But especially when Austin was in ward and recovering, it was really important to get out and do something for me to make sure that I still felt a bit in touch with normality.

Alana English: I would also suggest that you talk to whoever you need to talk to, and different people vary in terms of how much they need to do this. So if you're not a talker, then don't feel like you have to, but if you are a person who processes emotions and processes the stress of the day through talking to others, then seek out the right people.

That might be a trusted family member or friend. That might be the social worker on the team. It might be the chaplain from the hospital. Determine who's the best person for you and seek that person out. Continue to try and talk to your partner as much as you can, even though at this point in time you might both be feeling incredibly stressed. It's important to share your experiences so that you both understand where you're at.

Sabella Ryan: Originally I didn't like talking to a psychologist. I hated it and like pretend I was sleeping in like I C U so they wouldn't come and annoy me. But once I like left I C U and I was kind of discharged from the hospital, I did enjoy talking to my psychologist. And yeah, I do think it helped get over like that stage a little bit.

Amy Wilkinson: I don't think I found it weird reaching out. I just needed to. I just need it. And then, and then you reach out to a few, maybe a few different people. Finding those people who, you know, you go, you get me.

Sabella Ryan: So it's really important to stay in touch with your friends at hospital. I had some really good friends back here and like, obviously they wanted me to come back and play sport with them. So I guess like, just reminding myself that I was working towards a goal. So, yeah, that, like, encouraged me to keep going when it was really hard.

Alana English: Some other strategies that I would suggest is to think about what it is that usually would fill your cup. What's the thing that actually gives you some joy, makes you feel better in the day to day when you're not experiencing what you're experiencing here in the hospital, and then try and incorporate that into your daily routine.

Often for some parents who potentially are runners, they'll think, well, I can't possibly be going for a run. But go for a 10 minute run. Doesn't have to be a long one. Go for a 10 minute run. You will feel better afterwards. Throw on some music. Dance in the room. Sing out loud. Get into the shower. Sing out loud. If you want to get into the shower and have a little scream, if you need to. If that's what you need to do.

Whatever it is that helps you to release those emotions is the best thing to be doing at that point in time. If you can, read three pages of a book that you've always enjoyed. You know, a book that you've read before. Bring that book in. Read that book over because those three pages and that 10 minutes of reading will help to sustain you.

Amy Wilkinson: Definitely leaving hospital was stressful, but exciting. You, you, you're so used to living at hospital. There's a comfort then after nine, I think it was nine weeks in total. You've got this comfort and you know how it works and it is scary going home.

Shail Maharaj: In that time of transition and getting out of hospital, that's a significant milestone, but it's not the end of the journey. And for children within our unit, we, we're going to be reviewing them, you know, quite regularly. They'd come back and see us through clinic, all the way through their schooling years.

Dr Sasaka Bandaranayake: We have a day hospital unit and we also have outpatients where we continue to look out at the children's medical, and physical needs and psychosocial needs in the longer term.

Amy Wilkinson: Mia went home with a lot of medication. So it was up to me to learn how to dose that up. I even set up a little table away in our bedroom so that then I could be away from all the kids and just concentrate and make sure I've dosed her, you know, dosed it all properly. And her, her nasal gastric feeding. So there was a lot of pressure to be good at that. Be the nurse for me.

Dr Sasaka Bandaranayake: Many of the things that we do in rehab is in fact setting you up for success outside of the hospital when you go home. Things like transitioning from hospital to school will be started in the hospital school and continued at your local community school. Things like administering medication, you can practice with a nurse by your side. Attend the therapy sessions and see what the therapists are doing, what language they're using, how they're handling their child, what do they do to motivate their child. Then you feel prepared and I think that's what makes, the transition out of hospital much easier.

Shail Maharaj: So other tips that I would give to families as they're approaching that discharge phase is, get in touch with your GP because you know that they're going to be, a key member of your community team. If they've got ongoing needs, then there's funding organisations or funding schemes like the National Disability Insurance Scheme, where you've got choice and control over who, who makes up that team. And so as families choose the right people, the team here will, assist by liaising with those those therapists so that there's a good transition, and we can provide the best care possible for their child.

Cindy Martin: Before they let you go out of that hospital, just take two breaths, sit down and collect yourself because I wanted to go home. I miss my little boy at home as well. I wanted a Myles to get back to normal. I, I just, we'd had no sleep. I can't remember what they were telling me to, but all I can remember was you had to make appointments to go see your doctor.

Dr Chathu Herath: There should be some conversations between both medical team, allied health teams, and other specialists if needed, to the local paediatricians and GPs. And part of, what families can do is just to confirm those linkages have occurred. The teams in the regional areas are always happy to have a video conference as well with these families. So if there's anything that, is a bit more complicated or, need a little bit more extra follow up, that's something that can be organised as well.

Marissa Ryan: So coming out of hospital, you know, it's quite an intense sort of period. There's always a bit of a, you know, a lull. There, I guess, coming out. From the point of view of, sometimes you don't know exactly what you need to plan for and that's why having someone that, you can turn to when you so that like, like a nurse navigator service when you particularly when you're coming back out into a rural area, when you have had complex care needs, is really important to access.

You know, that sort of service. And there's nurse navigators all over the state, and those people would know what services are available locally to you, and help you navigate our healthcare system, which can be really quite complex. how you access NDIS in your area, what OT's are there, you know, who flies in, flies out, who offers those services in town, who has the skills to meet the needs of my complex child, you know. And so having someone that you, that locally that can give you that information is really, would be really beneficial.

Dr Chathu Herath: So some of the long term complications after sepsis are not always present in that initial time that you are discharged from another service or another hospital, it is important to engage with your local paediatrician and GP just to have that follow up. Some of the challenges that we find can be around, sleep or anxiety, low mood or, challenges around that social emotional state having been through such a significant event or illness such as sepsis.

Cindy Martin: He started to have night terrors. He wouldn't go to sleep. Casey was scared that he was not going to wake up again. I didn't call them tantrums. I called them episodes because they weren't tantrums. His behaviour, that was the hardest bit out of the whole lot. Once no one wanted to believe that he did what half of you did. To finally, finally get help and someone to listen to me, it was the best feeling.

Dr Sasaka Bandaranayake: You have to remember that sepsis is an overwhelming response, that affects all of your body. So it's not unusual for your child to be fatigued for a long time, during the recovery process. This may mean that you have to go. Slower on things that once you did with gusto, so the, if you wanted to go back to school, this is a slow graded transition if you want to go back to day care. Returning to sporting activities or community activities, again, has to be done in a very slow and graded manner.

Sabella Ryan: After having like sepsis and stuff, I was really tired and I still struggle with being really tired. So I only did like half days for a couple weeks, and then like eased back into full days. I guess like, don't try and like push yourself straight into it. Like, I think I've done that a couple times and like, it doesn't work.

And you just get really angry at yourself. So like, just ease back into it. And eventually, like, you'll be back to, like, a normal life that's suitable to you now, kind of thing. My life was basically just sport and, like, everything. So I guess when I came back, I just went and, like, watched all my friends play their sports, and, like, so I was still involved in stuff.

So, like, I guess my advice would be, like, don't just, like, distance yourself from what you used to love. Cause you can still be involved as a supporter, or, like, an assistant coach or something. And I think that really helped me work back to getting back to normal kind of thing.

Amy Wilkinson: When she got her first set of prosthesis I thought, how is she ever going to do this?

This is inconceivable that you could move in these and balance on your kneecaps and run. But she can do it, so you know it's a really really does show how you can adapt, how people can adapt. You know, especially kids, I guess they say kids really do adapt well and she doesn't know any different. She doesn't remember having hands and feet or what it felt like. So she's already, you know, her brain's already moulded and adapted to that. So it is amazing.

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.

Cindy Martin: It's been a very, very, very long road. I don't think we're quite finished. I don't think we'll ever be finished. My biggest thing is don't blame yourself. Ask for a second opinion. You don't have to take no for an answer, and it's tough. It is really, really tough. And it's really hard to see your child sick because you don't know, you can't fix it.

Take time for yourself because I wish I did. And find a friend. If you don't have a husband or a wife or anyone like that find someone that it's understanding of you and can give you five minute peace. Even if it's just go to the toilet or take the washing out or , I've learnt to, the housework can wait. If you come into my house, I don't care if there's stuff on the floor where the kids have been playing craft or lego, they're happy. It's about family time now.

Marissa Ryan: Something that I say to my girls all the time is just get your big girl pants on and get out there. And, I guess it's on that theme of trying to be brave that, , you've just got to step up. Because no one else is going to step up for your child, except for you. And they're depending on you to be their advocate.

And no one who's going to judge you for being an advocate. In fact you'll probably let yourself down if you don't.

Tiffany Ritchie: So, after being through everything with Austin, my advice to parents would be to not wait. If your child is sick, don't wait for a reasonable hour, if it's in the middle of the night, to take them to hospital. If we had have waited until a decent hour on that Sunday morning, he wouldn't be here with us because he was that sick.

If you have to go back to a GP or take him to emergency days in a row before you get advice or the answers that you need to find out what is wrong with your child, then that's what it takes. Because you brought this child into the world, you need to look after them and you can't take no for an answer if you know that there is something wrong with your child.

Amy Wilkinson: We're three years on and it's not as much of a rollercoaster, but there's still days where, you know, I'll be in tears to Mia's teacher because of something that's, you know, she might've been upset that morning. So, you know, it's levelled out, but there's just, you know, still there's, there's grief and, and guilt, you know, that I carry now that I'm, you know, I need to work through and deal with.

Marissa Ryan: The whole experience has been really, really challenging. It was really, really challenging. Thankfully we supported, we had amazing support around us. And then, and when you, when you are so vulnerable, it just being, The generosity and love of others absolutely astounded me, you know, and, I guess being a, allowing yourself to accept that generosity and the love of others, and allowing them to help and support you.

Amy Wilkinson: You know, you do have worries for the future that, you know, you can look at everyone's limited in some ways. I'm never going to be. The winner of the 100 meter sprint in the Olympics, you know, because of my body, it's not going to do that. So, you know, so it's everyone has to work within their own abilities and limitations.

So she's adapted and will problem solve. And, you know, it's not even that you, you're intentionally adapting how you think about it. It's time just creates that, you know, it just happens that, okay. Mia, put your legs on. Max, get your shoes. Mia, you know, sit down. Come on, we're gonna put your leg, you know, and she'll get to a point, like we put them on for her now, but she will get to a point where...

She will be able to put them on herself. And that feels impossible, but it will, you know, she'll, yeah, she'll figure it out and away we go.

Tiffany Ritchie: I did daily posts on Facebook for family because I didn't want to have to tell the story and give updates over and over and over again. So they come up in my feed every year, every year they come up and it's a nice, it's a horrible reminder, but it's a nice little reminder of how far he has. He is the most determined and strong world little boy I have ever met.

I'm very lucky to be his mum.

Sabella Ryan: It's life changing. It definitely changes, the way you look at things, and the way you, like, look at other people, as well, and, sick people. It changes your way of life and how you act on certain things. It really changed who I am as a person, and encouraged me to grow up a lot faster than the rest of my friends, and it's, it guided the course, like, where I am today. It's guided, what I'm doing at university. Originally I wanted to do a different course, but, being so sick has guided me into doing nursing. It definitely changes the way you look at things, and yeah.

Marissa Ryan: She's a very social person and a hard worker and, you know, she's always been a leader, but, I guess since the accident, she's certainly built resilience and, has you know, matured into a, you know, beautiful young woman, with lots to offer and she just shines, really.