Michelle Slept by Her Son’s ICU Bedside for Most of Last Year

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I heard him call out, I like mom, like where are you or something, and I'm like I'm right here, Darlan.

And then he was like, don't you leave me?

Sorry, And I was like, I'm not going to leave you, Like, I'm you can't leave me. You could have promise me don't leave me either, and I'm that was really the last thing that he said to me.

Today on No Filter, we're talking about motherhood, fear, and the unimaginable moment when a child becomes critically ill. My guest is Michelle Burgess, whose nine year old son Leo, became suddenly and dangerously unwell earlier last year while their family was on a holiday. Within days, Leo lost the ability to move his body. He was transferred between hospitals in two states. He was eventually placed into an induced

That is.

One of the hardest crosses to bear. And I know that many of our listeners will be in situations where they have a.

Child of their own or a child that they love.

That has had some illness before them, yes, or some calamity, And the hearts of listeners will be with you as you take us on the journey that you've had with your youngest son, Leo, and we thank you in advance, and we acknowledge those who are listening, okay, because it's hard and what you've done is very hard and unexpected. Unexpected because of course, when you know, when you are enjoying the world as much as you can, which I believe that you were.

In December twenty twenty four.

Yes, yeah, we flew down to Tasmania on December twenty twenty four on New Ye's Eve because Leo wanted to have New Year's Eve at my sister's house on the northwest coast.

So yeah, we flew down early in the morning.

And so Leo at this point is how old he's ape right.

And he's your second. You've also got Charlie.

Yeah, so Charlie was fifteen at time, that's great, and Charlie was he was now he was down in Tasmania already because he was older, and Leo, with his neuro divergence, was very still, very attached to me, so there was.

No way that he would go down there a lot, of course.

So Charlie went down first and was with my family, and then Leo and I went down on.

The thirty first, just because I had to work up until that point.

So you go, you're looking forward to everything.

Yes, absolutely, yeah.

A glorious time, the new year.

You reunited with your sister, Yeah, your beautiful boys.

Yes, yeah, all my family live in Tasmania, so I get to see you all, everyone all at once.

Yes, absolutely yes.

And then what happened, Well, everything was okay until he became unwell on the fourth, like the evening of the fourth. However, looking back, the first kind of signs I think that were missed was the evening of the third of January. So only a few days after we arrived, and my sister and brother in law and I and Leo we went out for dinner and we kind of how is this going to go? Because he has ADHD and ASD.

So situations like that are challenging for him. Yes, just anyway, but they can be navigated.

Yeah, he seemed excited to go, so we thought, let's just try it.

And he was fine. He just was drinking excessively.

So you nor whenly go out to like country pubs and you get the jugs of water on the table. Yeah, two of those that night, Like we couldn't stop him drinking, and I was like, he's I know, that's the health risk in itself, Like that's I thought he was being silly, but I don't think he was now, I think that was something had already started happening to his body.

But didn't think anything of it. And then the evening of.

The fourth we like, we were staying at my sister's house and he was just chilling out on their couch watching YouTube and he's very still and quiet, and then he said, Mom, you know, can you carry me to bed?

I don't feel well, which.

I hadn't had to do for a long time. So I did, and I was like, well, you know, what's the matter. And he's like, you know, my I've got a headache. You know, my eyes hurt. You know, I feel really.

Hot, and I had he doesn't sleep.

He hadn't been sleeping very much because the sun doesn't set till about ten down in Tasmania.

On the summer time.

Yeah, and then he's up first thing to be with my sister's dogs. And he's always struggled to explain how he feels and where things hurt. So like, for an example, once he had a sore throat and he was telling me his neck really hurt, but it's a line of questions to find out that it was his throat that hurt.

So when he said he had sore eyes, I was like, well, youah, no wonder because you're tired and they probably saw, you know. He slept all night and then woke up and we went for a swim, so I was like, oh, that's over and done with. But then when we came back, he vomited and was burning up again. So I my sister, having no kids, I was like, I need to go and get some Panda and Europan and I got like an influenza test and a COVID test and a thermometer,

My parents' house about ten minutes away because it was a bit darker and quieter there, and but he hopped up and he was you know, watching his favorite TV shows, eating, and he seemed okay, and then he kind of crashed again.

So it was weird. I was thinking, Oh, he's getting better, and then no, he was rushed again.

So this went on for maybe two days, and you know, after that day, then the next day he wanted to go op shopping because he likes op shopping.

And then that night.

That's when I was like, something's not right, Like he was really really distraught.

He he wouldn't drink for me anymore. He wouldn't let me put the I can't even think what that stuff's called. You know, when you dehydrated and you hydra light o the hydra line. He wouldn't even let me put that. And we were just in the dark the whole time.

And then at one point I looked with my phone torch and I could see half of his body had this rash on it, so quickly took a photo.

Then that disappeared, And in the morning, I called.

The rash disappeared? Did it?

Yeah?

The rash disappeared right down the right side of his body, the entire right side of his body.

And yeah, I called the healthline in the morning just.

To see what they suggested, because I didn't want to take him to the emergency room and have him have to wait there if they were just home. And she said, we need to either get an ambulance and I'm knowing the situation there with the ambulance, it would have been quicker for me to drive him.

And I was like, I want to have a bath first. This is okain, Like, I was like, oh no, we can't.

We going to the hospital, and he hopped in the car and by the time we got there, he couldn't walk, and I had to get a wheelchair to bring him in to the emergency room. And I'd called my sister and she met me there and yeah, so he was just kind of passed out on the bed by the time we got there.

And everybody, when you say he couldn't walk, he was too weak to walk at that point, in and out of consciousness or.

Just so lethargic and weak, and yeah, he just didn't have the strength to even.

Hop out of the car.

So I went and got a wheelchair and brought it out, and once he was in, we didn't mate in the ear.

I think they'd known of his arrival.

They just rushed us out in the back and we're taking bloods and fluids and he was.

So scared of needles.

Anyways, the fact that he just laid there spoke volumes to me that he's something's this is odd I've got you know, I've seen my kids sick before, but this is something strangers happening here.

And also you know at the hospital when they act with urgency.

Yeah, it's not good.

No, it's not good.

And it's funny, isn't it, Because normally you'd be appreciative of it, but they vibrated a different sort of frequency.

Yeah, I mean, and they everyone there was amazing that they had a They decided they needed to do a lumber punction.

I'd never I didn't know what a lumber puncture was. I had no.

Idea of where their thought process was going as to what might be wrong with Leo, as to why they might want to do the lumber puncture.

So they gave him ketamine.

So they gave him about a lot of ketamine to try and keep him still. And there were like doctors everywhere and nurses everywhere, and and Leo could still kind of talk like he's a fighter.

He fought that ken of mean, he was not. He wasn't going to catch it.

But they weren't successful with getting any fluid out of his spine.

So what were they looking for at that point?

Do you know? I know now I didn't know at the point at that time.

So at that time, what I've learned is if you present to a hospital a hospital with like men in Chicockle type symptoms, they.

All which was the rash and the yeah and the eye pain.

They also they start to look for different autoimmune diseases.

But I had no I didn't that. I just didn't even come into my mind. I just thought he had a virus and even at this point and then he'll get better, even with his eye pain. It wasn't until were in the hospital and I said, you know, the first day he was complaining about his eyes being sore, but he hasn't mentioned it since. And he goes there, Oh you know, they have been sorry. I wasn't just just he wasn't saying anything.

So it was which of course is a very interesting glimpse into the mind of a child, from the mind of your boyo, because they also want to feel well, yes, and they don't want to do anything that's going to cause you alarm.

Yes, that's correct.

Yeah, And they don't want to do anything that might result in them going to hospital and being possibly away from you.

Oh. Yes, So that was never going to be an issue. That would never have happened, that I would be away from him. He doesn't know that. And even after they weren't successful, like a few doctors tried to get the spinal fluid and they weren't successful, and they were like, you know, they said, we can't give him any more ketamene. He's had like five or six rounds of it now, and they were like, you know, he needs to just

You know, they're like, you need to lay out. He won't be able to stand up.

So but yeah, he swung himself off, kind of had to hold him up, just hold him there because he wasn't staying on that bed. He was determined he didn't want feed in that hospital at that point in time.

And how are you at this point You're obviously just in the moment of trying to keep Leo calm and try and reassure him. Yes, but at this point you must have some escalating fear.

I did.

I I just didn't know what was happening.

I'd never seen either of my children like this before. And the worry of the people there, but I still had this idea in my mind that he just got some virus and into given maybe any biotics or something, and then you know, in a few days he'll be better.

You know.

We were due to fly home, I think in a few days later, and I kept saying to the medical staff, Oh, should I cancel our flight or we'll be out of here but we and they're like, oh, we don't want to say yes or no, And I said I'll just keep it.

But then one doctor who I always.

Remember him, one doctor came in and when I asked, he was like, absolutely, you're not making that flight. He's like, he has to at least have been below the fort forty degrees fever for a few days before you can even think about leaving this.

So I was like, okay, I've been told, now I'll cancel my flight.

So yeah, that was that was when that's still not quite any concept of how long we would be there. Like at that point they said after the failed lumber puncture that they were we needed to stay a night and he'd go on to general and aesthetic the next day and we'd have an anetheesist come and and do the procedure.

So yeah, I thought maybe one or two nights wo'd be there, so.

You at this point are still hoping that you might make your flight home.

Instead, what happened.

Well, he just deteriorated very quickly at that hospital, I mean, and there was nothing to do with the treatment. It was just his condition. And they'd come into the room and they'd do all these tests like can you feel this on your legs? And you know, they'd shine the light in his eyes and something I got used to after many many months of it happening, and you know.

Testing for strength.

Then probably he said to me at one point when he needed to use the bathroom, like, I can't we properly because if you've got boys.

Yes, I've got three boys.

I've got three, so you know when they we they think it's fun to start and stuff and start and stop.

So that's what.

He was kind of doing. And I was thinking, oh, he's it's just a thing. I could hear him in the toilet do it. And then he said to me, I can't, like, I can't do we properly, and you know, so I try the water. And after about maybe two or three times that happening, I was like, maybe something's not right, so I told the nurse.

She noted it.

They were like, well, put the shower on. They were offering all these ideas, play this, blah blah blah. But he started to get he was getting sick up basically, and getting quite anxious about it. So I don't think either of us has slept very much at this point, and he wanted me in the little hospital bed with him.

They're exhausting days, so exhausting.

Yes, it's another level of tired, which just continued. Yeah, but at that point we were getting up every ten fifteen minutes because he would say, I need to go now, and so we'd kind of go into the bathroom. We had our own little room there, and we'd go into the bathroom and he'd try and then he'd stand there and then he'd sit down, and then he'd apologize to me and say, I'm so sorry, Mom, I can't go, and I'm like, you don't need to be you don't

That he is. But yeah, he got to that point.

After the break.

Michelle recalls the moment when Leo's condition rapidly declined and what happened after. So you're on this downhill descent now, whereas only a few days earlier you were celebrating with your family. Yes, and your boy, even though he had his challenges, was a normal eight year old boy.

Yeah, all of life, having fun, and you know, he was running around. He loves my sister's dog, so he was always like running around with them. That he was getting up early in the morning to go out the dog flat door at the top of the stairs, go down down.

Way with them. Like, Yeah, he was always on the go.

And you know this, he'd look forward to this trip for such a long time because he had had a difficult year at school, which was the first he'd had a really difficult year at school, and this was you know, he was really excited for this trip.

So it was.

He was it was hard because I thought, you know, he only had a few days and you know now he hasn't really got to enjoy yet. But yeah, that kind of going back to that night when he was still trying to to go oilet, Yeah, because I've been getting up so much and you know, i'd get in there. At one point I heard him get up and he

He was unconscious.

No, he wasn't, or had he passed?

Had he passed out?

When he he may collapsed or yeah he made and he had No he didn't even know that it had happened because when the nurses were there asking, you know, doing their valuation type of thing, it was as if nothing had happened.

Now that I'm never going over how loud that was, like that would have really really hurt. And you know, then he still couldn't do anything. So that's when they suggested, like, we'll get the chair and he can sit in the shower. Maybe that will help. And that was the first time he started. He said to me, where are my swords? Mum?

And I was thinking because he hit.

His head, and I was like, oh, wish, he's my three swords. Where are my three swords gone? And you know, he went to worry. So I was like, I'm not sure, like you know, I don't know. And then he was like, what's that stuff moving around the room and and there's stuff crawling on your pajamas?

What are they?

And I I was blaming myself because I wasn't quick enough, and so I thought it was because his head.

Now this was happening, But yeah.

How are the nurses then, when he was saying things like that, did that Were they attributing it to the knock on the head or that he'd been a bit delirious or was that a warning sort of flag for them as well?

Yeah, I think it was a warning for them, but they also had to consider that it might have been the knock on his head. And I only know this because of like I've had a look at the medical records.

Yes, and that's the only reason at the time.

At the time, it's very hard to convey to people how very much in the moment you are and operating with such limited information. Yes, you know, you're kind of scanning for clues. You're trying to hear conversations that nurses or doctors are having outside of your earshot. You're trying to read them when they come in.

Absolutely, and I am big on that, Like I feel like I can always pick up on what's happening.

But clearly I was off my guard at that point.

And they can't remember kind of what happened in between that. But I remember when we were back in the bed and a nurse came in because they hadn't seen that.

That was just Leo and I in the shower at that point, and then when they came in.

I mentioned it to them and then at an escalator because he was saying to the nurse, why do you have a drone in your uniform? Like why is there poke balls floating around outside the room? And so they witnessed that, which is great because I think it is a it is a symptom of auto in diseasis as well, which I found out many months later.

Right, And also sometimes I think as the mother in this instance, when you're relaying things, sometimes it's dismissed as you being hyper vigilant or you know, over obviously overcautious or whatever. But for them to witness it, yes, they twigged. Then did they that it had more significance?

Yeah, So that's when that's when more tests and more doctors started to come in. And this is a regional hospital, so they were limited with what they could do. I mean, like I said, the stuff, they were brilliant, but they had limited resources. They took him to maybe CT scanner. I think they had there. So they did that on his brain to see if there had been any injuries

That's my privates. Don't you do whatever. I'm just trying to bite them and stuff like that. And I'm like, we'll watch out, like get you. And they once they got the catheter in.

You know, I know a lot about bladders now for eight nine years old and know a lot about them. So he was only meant to at that point, I think be able to hold about two hundred and fifty three hundred and fifty meals of year.

Ie.

When they got the Catherine and drained it, there was over a leader in there, which is.

Like because he hadn't because he hadn't been able to urinate for so long.

Yes, yes, so that was just kind of the first thing that was shutting down for him, and things started to move quite quickly at that point. They were like, we need to chop you down to Hobart. I think around that same time his legs had stopped work as well, and yeah, that was like just raising alarms.

So they still I'd never heard of auto immune deities.

Still at this point, I had no idea what was wrong with him or what even might have.

Been had they proffered any any theories at this point, or they were still just trying to arrest the symptoms and work out what was going on.

Yeah, No, they hadn't suggested anything more than it could be like a Bencher coocle type of thing. But they were you know, you've got to give him permission to treat him for whatever they think it might be without having a diagnosis, just in case it is that until they get a diagnosis.

And I was like, yes, like please do, Like I'm not going to say.

No, so then you get choppered to Hobart.

Unfortunately not so up until that point, they'd been lovely weather down there, and then there was a storm that hit that morning, I think in Hobart, so they couldn't choper us. So then they had to organize a like ambulance transfer. So it was it was a long transfer, but they had to like there's a shortage of ambulances there as well, like it's a known kind of a known thing down there, and they all have their areas, so it wasn't just one ambulance that took us down there.

We'd have to get hot ving. So it was it was probably twelve hours.

Later by this point, and he looked he was really bad that I remember a nurse taking him out of the room and it was the first She's like, oh, you know, we can't believe you just sat in a dark room the whole time.

And in my head I was thinking what else would I be doing?

Like, where else would I be Like it wasn't even a I didn't even think that it was a strange thing to be doing. Just just sat in the darkness quite so long, and I was like, he's not going He's going to be Okay, isn't he like he's not going to I'm not going to lose him, Like I just remember saying to her like I can't live without him. I couldn't agine, like I'm not going to be to live without him, And and you know she couldn't. She was lovely, but you couldn't say, and did.

She answer you?

Because they're careful with what they say. Yeah, and then you notice that they're being careful with what they say.

Yeah, so yeah, I think it was something along that they don't have any answers, but you know, I know she's being positive. I just remember her being positive for me. And it was late that night, so it would have been about twelve hours.

So I've got I've got a photo of.

Him like getting stretched out and at that point hand was it his right hand? Alligan moved was his right hand by that stage, So within that twelve hours, Yeah, his whole body was paralyzed.

Apart from this hand.

And they had he was in this stretch with seat belts kind of like straps all over him to keep him in. And yeah, that's when we first got into the ambula and I had to drive thoughts seemed like ages and then we have to get out and swap the ambulance and this is you know over.

Wow, how many times did you have to swap?

So we swapped, so we were in four different ambulances, so we had to swap three times.

Oh my goodness.

Yeah, so we had to go into one place.

And I can just remember marrying these hot tech, like high tech ambulances and I'm sitting in and I'm exhausted, and I'm trying not like you know, trying not to see what I could see. Leo was also tired because he shut his eyes and then his eyes ald dart into his head and then he'd be awake again. And like he that entire trip I would have been six seven hours just because of the transfers like that that slowed it down.

Is he capable of communicating with you at this point or just the right hand?

That's is he He could use the right hand, but at this when he was just pretty much constantly hallucinating, so he was he was. I can just remember like I was sitting let's see here, and he was like laying there facing me, and he had like a clip on his finger, like a blood pressure thing, and even thinking it was like a McDonald's chicken nugget or something. And then so he's talking like he was in a drive through. I'll have like a happy meal with three

But yeah, by the time the last.

Transfer before we were taking to the Hobart hospital, he freaked out kind of like I could hear him because he went out in the stretch and then I'd go out the side door and then I'd go round to him and I heard him call out like mom, like where are you or something and I'm and I'm like I'm right here, darling. And then he was like, don't you leave me? Sorry, And I.

Was like, I'm not going to leave you, like I'm she can't leave me.

You would have promise me don't leave me either, and I'm That was really the last thing that he said to me, because by the time we got too into the into the whole art look into the ICU.

That was probably like the where reality really hit.

Like there's all of a sudden, all adoptors were there and the beachs and this, and they were like chitty chatting. Yeah, and his eyes were still just like really flickering, but every now and then they'd look at me, so knew that. So I was like, you know, I felt at that point like I'm so tired.

I felt like I wanted to vomit or part us out. And I was like, I I need him to be able to see me if if he looks at me.

And then everyone was not there all of a sudden, and there was a nurse in the like this little waiting area, and then his mouth started to do this thing where it just like started to like jut open and it was scaring me.

I was like, yeah, like can you come and see this?

And so it was like wide open and like the eyes like flickering and like a spasm. Yeah yeah, and they and she said, can you get some videos of it just in case. So I've got these horrible videos that I've never deleted, which is good for research purposes, I found out since, but yeah, these horrible videos that show how quickly even more so that he declined within maybe an hour of being there. Yeah, that by that point his jaw was locked shut. He couldn't make eye

At this point, you're.

So you've already been in the hospital, the regional hospital.

Now you're at Hobart.

Yes, things have really taken a terrifying descent. Yes, yes, are you talking to your mother? Are your sister and Charlie back at their place? Who who's talking you through this? Who's your counsel, who's comforting you, who's offering advice, who's advocating for you?

Well, my sister was always there, and she only lived a few minutes down the road from the hospital, so if I needed anything, she would kind of come over and chaut and like Charlie was there, but he was as fifteen at the time, he wanted to go and do fun stuff because it was the holidays. I don't yes, yes, couldn't comprehend it. This was serious, I don't think at that point.

Yes, he hadn't seen Leo at his worst then.

No, so he'd seen him when he first went into hospital, and Leo had asked for him, but he was bored. So he go and hang out with my brother like him his uncle, so which I get. And maybe it was like a way to protect himself as well.

Of course.

Yeah, I have to tell you, Michelle, as you're sharing this with me, my eldest son was diagnosed with lukemia when he was six.

Oh, my gosh.

And so a lot of what you're saying to me I'm very familiar with. Yes, yes, just when you're hoping that it's one thing and then it descends into something else, and then you're reading the faces, the horror on the faces of the doctor, and then you're taken into the room with the tissues.

And so I am.

Really very much going on this this.

Cruel journey with you.

How old is he now?

Now he's twenty two.

Oh, that's awesome.

So you were.

At this point though, watching your boy disappear from you effectively and go into I guess some other world.

Yeah, I just because I could see that he was still prior to everything shutting down, I could still see he was fighting, like trying to see me and.

So stay, trying to stay.

He really really was, and so he knew he was still there, and it was I don't know the time frame. They were like, this isn't a nice way to see anyone. We need to go, and they took him down to do a full brain and spine MRI and then they said we're going to put him in an induced coma, which I was it was this strange. I was so happy to know that because I didn't want him to be scared like that was the thing. I just say, I don't want him to just be trapped like that

And I think at at.

Some point in the first day of vioving in Hobart, I said you need to come down to test Mania, like you need to come down here, and he did, so, Yeah, he flew down I think the day afterwards. Leo every a few days and he had to be able to get a flight, So yeah, he flew down.

And so when he saw Leo, Leo was in the induced coma.

Yeah, you pretty much couldn't touch any part of Leo by that point he was, so they.

Discovered so he's when we got there. They were doing something with his stomach.

They had the nutric in in and they were seeing which I didn't know.

They were testing to see if his stomach was digesting.

And they'd put a certain amount in and then they'd aspirated out and they'd measure after a few hours how much it digested. And I was like coming out black and I was like, oh, it's because the last thing he ate was chocolate brownies, because you know he likes chocolate brownies.

He made them with my sister and they're like, oh, that's blood.

And I was I didn't quite but I just didn't quite believe.

I was like, what's chocolate brownie?

Is?

Like, how can that be blood? It's like the last thing he ate.

And it turns out that his stomach had just shut down, so that wasn't digesting. So you know, he had the one of the nasal tubes into his stomach and then they had to put another one below his stomach so his body would get the nutrition. And I liked how they explained it to me. They said, we're not going to take the other one out in his stomach. We're going to leave it there and we're going to keep putting little bits of the nutricent in. And it's like

Your right, what your job is?

Yeah, yeah, the stomach. Yeah, So they didn't want to not kind of do that.

Next Michelle takes herself back to the time Leo spent several weeks in an induced coma. So Leo is then they put him in an induced coma? Yes, And have they said to you how long they expect that is going to be?

If they did, I don't recall, but I don't believe they did.

You would have remembered if they had said to you, because how long did he end up being in a coma?

Quite a few weeks, I think, yeah, Like if my just trying to think the time frame, like after he'd come back from the MRI, like I got to give him a kiss and stuff down there, and then when he came back, like he was incubated.

He had the both of the names or I don't think they're called the nasal tubes.

He had had towers down each side of him with you know, just needles cut like all in his legs everywhere. There wasn't a lot of area that I could touch him touch, yeah, not even to kind of to touch him. So and I was a bit scared too, And it was the nurses. It said to me, he's still your son, like you can, you know, go and talk to him, like touch his hair.

I didn't want to heard him whisper to him, Yeah, and I did. They were great there.

They would say, you know, brush his teeth and they have this special toothbrush and then the shower cap thing that warmed up, and I think they could see that I was in shock at that point, so they were really trying to involve me and still being by him, so I wasn't in the distance looking.

And then when you when he was in the coma. So for those weeks, as well as keeping him sedated and trying to stabilize him, they're obviously running just a battery of tests, I imagine.

Yeah, So I found out there's a thing called an infectious disease team, So.

They were there every day.

They came in and they'd ask me questions like has he touched a horse?

Has there been a rat? Has there been this? And my mind's like.

Clicking my oh, well, yeah he did that. And there was a pony and he touched that and I'm thinking, is that it? But everything, And they said to me, at at some point they're in Hobart, we've got different levels of tests that we've run and everything's come back negative, and we're like on level five now, like and we're not going to stop, but everything is coming back negative. And I'm not sure how many lumber punctures I'd done by this point, like in total, I think he had

How supportive that they all were.

And we'd go off into the like a little family room, and the doctor, the main doctor there, would sit there and he was very honest, which I appreciate. He would be like, you know, we don't know what's happening. At this point, he's very vulnerable. There's no guarantee if he's going to recover. If he does, it's it's not weeks or anything that they said, Look, it's good months or years,

Yeah, he will and that's yeah.

What were you thinking yourself at that point, like what was the hardest moment? What were you seeing for yourself in the future and for Leo.

I mean I did say that, but in honesty, I did think I was going to lose him because his lungs were collapsing and you know, then they'd have to roll him over onto his stomach. It just seemed like everything was just getting worse, and I think it was kind of getting any better. There was talk of being transferred over to Westmead, but they said that could be in a few weeks. Like you know, I don't know. I know how they'll do like iv IG and different types of things.

What's iv IG.

Well, I learned these things, said I didn't know either.

It's a plasma infusion, which right, but the amount is I think it needs three to five thousand plasma donations per per dose. So there's they get approved, patients get approved for two doses, and anything more you need government approval just because of how expensive it is and how much plasma they need to make these doses of the iv ig.

So he kind of had that.

As it transpired.

You did end up then getting transferred to Sydney.

Yeah, so his lungs had collapsed at some point and then they flipped him over and then they were okay, and then the night they said another doctor had flown in and his lungs collapsed again, and that at that point, Like I remember, really my favorite times of the night or day were like two or three, So everything was quiet, and I'd hop up and I'd have like relaxing music on for him, and I'd get like nice smells and I'd try and rub oil, like.

His legs are so swollen, so I was just trying to think.

I was trying to move him anything I could, because I thought, you know, when he wakes up, if he hasn't moved, these here going to be sore.

So I was just trying to move things.

And and then when i'd kind of maybe get to sleep because it was like a pull out bed next to him.

I'd put a pillow over my head and i'd get it.

I don't know, I hardly slept it all, but I remember every time that I woke up and I heard the beeps, I'd just start to cry. And I didn't want to take the pillow off my face because I didn't want I didn't want it to be real.

I didn't want to be where you were, what you were looking at.

And just hearing it.

So I just just remember laying there crying with this pillow over my face before I was brave enough to take it off and go back into the reality.

But yeah, that the night when his lungs collapsed the last time that that was it.

I thought I've lost him, and I threatened nurses because Hobart Hospital is quite high.

They've got a beautiful, beautiful location there.

It's a nice new hospital for the kids, and I just said, like, if he dies, I'm jumping off the roof, like I can't live without him, you know, even thinking that Charlie would be okay, like you know, because he's got my he'll be all right, Like he's got my sister and stuff, which is just a horrible thought, but clearly.

You're not thinking rationally.

I was just like walking around the corridors is back and forth, back and forth, back and forth. I don't know how many times, because I just I didn't know what to do. And that was here now, like where the raw flowing doctors are coming in the morning and transferring you to to Westmeat.

So that was with his clatch lung and all.

So they're like, we needed they needed to do something called plasmaphoresis, and there was someone at Hobart Hospital that could do it, but they.

Were they'd never done it on someone as young as Leo. So I don't blame them.

I wouldn't want to be putting that situation where that's where I have to learn how to do it.

So they're like, on the main end, you've got to go there.

And also at this point you must have been like, if we have a chance, we have to get to a bigger hospital with more resources and more access to overseas technologies. You must have at this point gone, we really need the cavalry.

Yeah, one hundred percent.

As scared as I was, because I had, like all my family, they have my parents, my sisters, brothers, aunts in laws. I was so I had kind of their support, but I thought, this isn't about me. Leo's not getting any better, Like he's not getting better, He's there's not much more before the point he's gone. So yeah, it was it just has to be done. And so they probe the row flowing doctors have got a like a jet and that I can't remember what time it was, but I remember as they were it was it's a

And it was at that point.

Too, when they said, oh, we're not going to Westmead, We're going to go to Randwick. Because I found out later that the person that was doing that could do that treatment. There was on holidays because it was January, so you of course holidays, which kind of threw me because Charlie had lost his best friend to cancer maybe six months prior to that at Randwick, so all I'd kind of heard at that point was really negative things about the hospital from the parents.

You can't blame them.

So I'm really scared that we were going there, and that was it. It was like a death sentence. And I was like, I don't want to I don't want him to go there. I never would have agreed to it.

And Charlie's where now, has he He's still in Tazzi or he's gone back home.

No, he was still in Tazzi, so he was I didn't even know where he was half the time, but I knew he was with family somewhere. He was really struggling seeing Leo like that.

Yes, of course.

Yeah.

And and that is one of the things about when when you have a child that needs all your attention, it's all your attention, yea, absolutely, and the other child or children in the family often you just like will catch up with them later.

And in the meantime, this was your focus.

It was and the fact that I was thinking that he would be okay as well, like if Leo went and I was just planning on ending out, and you know, I've never been suicidal, but in that point in time, I thought I couldn't imagine ever having to live without him, and luckily I didn't have to.

Okay, So this is where we get a slight upswing, maybe not immediately, but is the good news or is it a positive happening when you get the diagnosis and how does that happen?

So we'd been in Randwick for I think a few weeks still, so he was still in an ICU and like we rocked up, he's.

Still in a coma. He's still in a coma.

I'm not sure if he was in a coma or he was just unresponsive at this point, so he was just yeah, so either just unconscious or a coma, I'm not one hundred percent. But he was still attached to everything. His lungs still weren't working, and nothing was kind of working,

Oh he did.

Yeah, so.

That's when like he had to he still got scars on his body, so they had to put like the needle thing into.

In his growing kind of area.

And it's period hours they'd take all his blood out as his bload process, take remove his plasma and then you know, the blood goes back in with saline or something like that. So like even I think it was during that period when he had those While he was having those eight rounds, the neurologists.

Came in one morning and he said, oh, no.

You know, we've got some good news, okay, And it's like, we finally have a positive marker on one of the lumber puncture tests that were sent away in Hobart.

And that's so is that it's autoimmune.

And now he said the name, because he's super intelligent, it was g fap Astro's psytopathy. And then he goes, but it's so extremely rare. He's like, we've not seen a case of it before. We've only got case studies to do our research on and like he was discovered the same year Lea was born, like in two thousand and six, So.

Which is extraordinary, isn't it. Yeah?

Yeah, I always thought that's mean, Like it'ld always stuck to me, and it's saying that he was born that was when they discovered it and.

What is it?

What?

So it's an autoimmune disease.

Yeah, So it was his entire brain and spine and the ninja's were swollen. So that's what that's why he'd become like he had because the swelling and they.

Which makes me think, gosh, he was brave when he was complaining.

About headaches and sore eyes, like you know, as an adult, I think we'd be so much more vocal if that's what was going on with our body. You know, I've read so many case studies and trying to find out as much as I can about it.

They still don't know why it happened to Leo.

Sometimes it can happen if there's a tumor or an autoimmune disease already. You know, there's a few things they know that can cause it, and there's all different levels as well, So some people only kind of get wobbly legs or you know, a few little symptoms, or it seemed like he just got absolutely everything, absolutely everything.

Yeah, and what so when you know, because the worst thing that can happen is that you have a diagnosis and there's no treatment.

But that's just cruel.

But they did have a treatment plan and a treatment pathing for LEO.

So they said, so everything that they've done beforehand, treating for other autoimmune diseases does also benefit this autoimmune disease. Everything they'd been doing was helping fight this, and they said that they're one of the things they find that works most positive for improvements is really high dose steroids like prisoner Zone. I don't know why I've never let right it work correctly.

He was read in this loan. Yes we yeah, so I learned how to say that one.

It's got some ls and stuff.

Yeah, that's a popular one.

He was on massive doses of that.

And one of the new neurologists came down and she gave me a case study. She's like, this is the most recent pediatric case study that we found on this autoimmune disease. Like, so you can have a look at it. And then that made me you know, someone had died on it, this had happened. There was only a few cases, and I was like, what when did they start giving him this or this? Because you know, I was basing it all on when the little one died, like and what they thought might have happened.

So I was looking too much into it.

But it's like, you know, there's no results up at this point, then you can try these two drugs. And after they've done everything and there was still no improvement, I was saying to them, well, I read that there's two other drugs that you can use. Can you start doing those? And they're like, let's just wait because there's they know, let's just wait and I don't know. A few days he's eyes started to open, so that was

What were you saying to him in this period because you were sitting vigil by him constantly.

Yes, so I never left him.

To go to the toilet and stuff.

I had to, yes, but you know, apart from that, Yeah, I slept on the floor for the first few nights until I got titles and they'd to sleep on the floor next to his bed anymore.

Then they had kind of had.

A chair there because it was the old hospital, like they've got the just opened.

The new one boos the old hospital at that point. So yeah, I just kind of sat there they were.

I was kind of watching what the nurses were doing and kind of trying to learn different things, you know, placing pillows and stuff for pressure saws. You know, he was only he was in a nappy at that point. That was all he had, and he was he'd been he was so backed up, you know, there's so much and like stuff. They were trying to get everything out, you know, that was still trying to be friendly. Call it like old poonami type of thing to try and make chokes, you know, trying to wait for that.

To come out. And yeah, I think I.

Was just kind of trying to learn from them because I knew when he was if you you know, when he was going to wake up, that he was going to be more comfortable with me doing as much as what needed to be done.

Then kind of a stranger just because of.

Who he was and what were you saying to him.

I didn't tell him how long he'd been in a camera. I didn't tell him it was Nintaszi. We were just I was just talking because about Finnegan, my sister's dogs, and Ollie. I was reading books. He loves the Roadblocks books, so I'm just reading those to him.

And was there any were you looking at this point for any sign that he was there or could hear you or could tell what was going on, or you were just no.

I definitely was, but there was no.

I wasn't getting any indication that he knew A use to put earbuds in his ears.

At nighttime just in case and have like you know, like forest chanty kind of.

Music, and so he didn't have to hear the thing and the and the noise of the hospital, because I just thought, if you can hear that, he's going to be scared. So I was just trying to make it as relaxing as possible for him.

And yeah, just read lots of books.

And yeah, at that's time, I thought it was hard, but it was when he started to open his eyes.

That was that was difficult?

And why was that difficult?

Because he couldn't communicate and he would just stare at me, and I would try and come up with a way to communicate, like, let's, you know, blink sick.

Can he blink once for yes and twice for no?

And you know, I'd ask him a question and he would purposely do the blinks. But then it was trying to figure out the next questions to try and help him, and that's when he kind of just shut his eyes again, like you know, and I felt like I was failing him because I didn't know what the right questions were or what he kind of needed, and.

Because everything would have been so terribly hard for him, even a blink would have been would have taken all the effort in the world.

Yeah, I imagine so absolutely.

And then as he started to heal a bit more and they were they you know, a week more down the track, and like he wouldn't sleep either. At that point, he was just eyes open. So I was like, I can't leave because I don't want him to not see me kind of there, and then he as they were like, oh, his lungs seemed to be starting to work by themselves again, like they were looking at the charts and and like, we don't want to excavate him while he's not ready.

We want to give him the best chance.

We want to leave it there so the steroids can work and get his lungs stronger. And that, oh god, I hated that part of the thing, because he was he'd looked at me desperation for help, and I've just felt so helpless. He was gagging on the the tubes and you know they have to, you know, and they suction and the suction thing into his life lamb and yeah, and into his cheeks and you'd be trying to bite, bite down on it because it must have just felt

And then just it's like you're torturing you like you're torturing your son.

I felt like it, absolutely, And but as quick as I had that thought, I had the thought that I'm not the one suffering here. He's the one suffering. So don't you dare go anywhere. You need to stay here and you know, and be strong for him.

Yeah.

Absolutely, Michelle, there's no doubt that you've been strong for him.

No, like, no doubt. Extraordinary.

Yeah, when was the first time that he spoke to you?

And how was that?

That was so emotional.

So when they told me they were going to attempt to excavate him, I'm sure that's the word.

I might be saying it wrong, but they're like, you can't.

Is that when they take the tubes out?

Yes, and then they've got it put the mask on him, which is really tight, and I was thinking, I don't know which one is going to hate more than that all the how tight.

The mask is going to be.

And so I had to kind of wait outside, and I get why, because it's probably a horrible thing for a parent to see that procedure. And then they came out and said he's ready, and I went in, and.

Yeah, I was thinking I was just praying that he could talk.

And I just remember and I've got a video of it, and I'm like, oh, I it's like.

Sweetheart, and I'm like, like.

I love you. Can you say anything? And you can hear my voice just going into crying. It was like no chance to be strong. And then he looked at me and he and this little little weak voice is like like hi, Like I love you too, and yeah, that was the best, the best thing I've ever in my life. And in hearing that, I just thought, as well, thank goodness, Like now he's that. They weren't sure that I'd have to put the put it back in or how his lungs would heal, but this just goes to

His mom's a fighter, and he's a fighter.

You know, I fell apart in behind the scenes when he was when he couldn't see me as soon as he woke. That was when I was like, Okay, tears stop now. Tears are stopping for me. Now it's his turn to if he needs to cry, it's his turn to kind of cry.

Now I can't be crying anymore.

Yeah, and then there was a continued journey back, slow but journey back to wellness.

Yes, so that at that point they were like, we can go to the ward now, and which is great because the ICU was so noisy. It was so it was so noisy and overwhelming for him as well.

And to be in a normal ward is like heaven compared to ICU. Absolutely, it is a stranger definition of heaven. Really changes.

Yeah, And I lived on one of those pull out beds you know there's those little pull out couch sorry things for much over five months and I never complained for a second because it was fine. Like I was next to him, were comfortable. What more could ask for? I didn't have to be separated from him?

So what what does your life look like now with Leo and Charlie?

Very different?

Like after Like we stayed in that ward for about four and a half months and before we got to transfer to the Ronald McDonald house, and that was heavenly. I just have to say that when he got to sleep in a real bed for the first five and the pillows, everything about.

So lovely place and starlight are amazing as well when you've got a kid in long days in hospital. Yes, people can't even conceive of how happy you are to see captain starlight.

And he has a favorite like to start with, he didn't. He was just like in the ward because he was totally paralyzed.

He could talk, we couldn't eat still, so he's learning how to eat and he's super thirsty. I was hoping, I hope. It's so hard to share it more like I was hoping that he wouldn't remember any of that. And I asked him later and I was like, do you remember being in icing or something. He's like, yeah, I remember hearing someone talk about the food that they were eating, and they were having sausages or something. He's like, and I just wanted sausages so bad. And just how thirsty he was.

Well, that's interesting, isn't it to know, Yes.

When you think they can't here or you don't know how conscious they are.

Yeah, and he could hear the food and and yeah, I just remember he had to he was thirsty, and he kept going, I'm so thirsty.

And that's so you could just have the cotton tips and put the water in it.

And I felt so filty, so I'd like, really soak those cotton tips.

So I was really trying and wet his lips.

And yes, yeah, But once we got up to the ward and the captain started to come in, he was I mean, he was still so very.

Starlight by the way people like the cat happens the starlight, that's our captain.

He was. He was still so six and being in somewhere so foreign, but you know, they were just really gentle with him. They've done what they're doing for so long.

Now, they just they do it so well.

And you know, they were general with him first, and then he was They were trying to encourage him to come to the buck once we learned how to use the hoist and get him into a chair and strap him in. They were trying to encourage him to come to the Starlight Room, but he was like, I want to wait for Charlie to come. And my parents had to fly back with Charlie. He started year eleven, so he was away from us apart from every second weekend.

Oh wow, and that was.

A hard How was their reunion?

Very teary, very cheery, yoh, Charlie, Charlie.

Yeah. I've got a photo of him next to Leo and you can just look on his faces.

I've never seen that look before, but oh my god, he like.

Fifteen, was having to get the train, then the light rail ter ran with hospital, and then he'd stay with us and then he'd have to go back on the Sunday evening. And that was the most heartbreaking bit because

Yeah, you don't have to say that anymore, though, do you.

Oh gosh, no, absolutely.

And when we like when he was up for the school holidays, it was like heaven because we got to see him for a block of time. And then when we were leaving the day that we got to leave the Ronald McDonald house to come home, it was like scary because you've lived in this world. It's so detached from reality, and everyone's kind of going through a situation as well with their children, and everyone's supporting and not saying that people in reality art, but it was we'd

He had to start a new school eventually.

Yeah, just not have been in the house even for that time period of time, like you.

Know, Leo everything.

Leo was excited to get in the house.

I don't know how long I spent rearranging the garage unnecessarily before I could even step through the front door, like once ago to the driveway. I was just crying, and you know, my parents were there and I was just in the garage doing stuff I did not need to do.

So I just had to.

Build the strength to go into the house for the past time. Then I was just like, what's happened to my house? But you know, obviously that's not important. But yeah, we're back. You know, it takes quite a while for it to feel a new kind of normal. And I remember the first time, you know, shortly after when we had to go back down to the hospital for a week and Leo said to me, I feel like they're going home now, doesn't it.

And I was like, yeah, it's weird, it really does. It feels like Randwick's now the home.

But even now when we go back when he used to go to Starlight because you know, when I was saying, going on a tangent going back, he was didn't want to go before Charlie, and then Captain Powers managed to convince him to go and make a birthday card for Charlie's sixteenth birthday and then we can bring Charlie in,

Yes, yes, yes, yes, yes, Well it's for children, isn't it. They understand children and they understand what children need.

And when we were in.

The children's hospital with Lewis, I remember it said on the there was a little like poster that a child had drawn and it said birds seeing fish swim and children play. Oh wow, And I always just thought of the simple truth of that. And then when you get to see your child play after not having been able to for so long.

Yes, that is a thing of beauty.

Yeah, And he would just look like he wouldn't even initially, and you know it's only actually been recently, like when we were there this week, he was the most outgoing I've ever seen him interactive because of his neurodivergence.

And so if Charlie was he'd hang out with Charlie or he'd hang out with me.

And you know, if other kids wanted to play a game with him, he would let them, but he wouldn't talk to them, he wouldn't look at them, but he could play and he wasn't being rude to them or anything.

But it was.

Yeah, the last few trips, I remember there was three boys, three or four boys, and Leah was there chatting with them, playing with him, and I was like, wow.

Look at you, like you're not in confidence.

And then this time here he was just well cheeky with the captains and he felt really really proud because he kind of went into the room and he hopped off half out of his wheelchair and they kind of celebrated him. And so then he was determined to say out of the wheelchair for as long as he could. Now, I'll let you know that he was agony, couldn't walk after the fact, but he wasn't letting him know that because they were they were so proud and happy for him to see such change.

You know what that is I think that's Leo the lion Heart, isn't it.

Yeah, at one hundred percent, absolutely it is. Yeah.

Thank you so much for sharing like an extraordinary glimpse into a world that most people mercifully will never.

Get to see.

Yes, but you have, and a world in which you've prevailed.

And I don't mean to interrupt, but one of the reasons that I try and share this story, you know, not only to promote how great Starlight is and how important they are, just in case there are ever any parents out there whose child goes through something like this, so that they can see that there is there is like a you know, there's a rainbow at the end of it, because when there's no answers and you just don't know, like you kids are so resilient, and you know, not to kind of give up hope.

Michelle Burgess never expected to have to tell this story. What she's shared today is not just the medical reality of Leo's illness, but the emotional truth of what it means to love and care for your child when the future is uncertain. Leo's recovery is ongoing, and Michelle and her family continue to navigate that journey.

One day at a time. Michelle spoke about.

The comfort and support Leo received from the Starlight Foundation during his time in hospital, and if you'd like to support the work they do for seriously ill children and their families, you can find a donation link in the show notes.

Thank you so much for listening to No Filter.

The executive producer of No Filter is Breed Player. Audio production is by Jacob Brown, and video editing is by Josh Green. This episode was recorded at Session in Progress Studios and I'm your host, Kate Lanebrook.

See you next Monday.

Mamma Mia acknowledges the traditional owners of the land and waters that this podcast is recorded on