Journeying through Sepsis: Facts about preparing for discharge

Transcript

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.