WEBVTT - Michelle Slept by Her Son’s ICU Bedside for Most of Last Year 0:00:05.799 --> 0:00:08.519 You're listening to a Mother and Mere podcast. 0:00:09.119 --> 0:00:13.159 I heard him call out, I like mom, like where 0:00:13.159 --> 0:00:15.999 are you or something, and I'm like I'm right here, Darlan. 0:00:17.519 --> 0:00:20.239 And then he was like, don't you leave me? 0:00:22.319 --> 0:00:25.079 Sorry, And I was like, I'm not going to leave you, Like, 0:00:25.199 --> 0:00:27.959 I'm you can't leave me. You could have promise me 0:00:28.039 --> 0:00:31.919 don't leave me either, and I'm that was really the 0:00:31.999 --> 0:00:33.799 last thing that he said to me. 0:00:41.839 --> 0:00:46.439 Today on No Filter, we're talking about motherhood, fear, and 0:00:46.479 --> 0:00:52.519 the unimaginable moment when a child becomes critically ill. My 0:00:52.599 --> 0:00:56.119 guest is Michelle Burgess, whose nine year old son Leo, 0:00:56.799 --> 0:01:00.599 became suddenly and dangerously unwell earlier last year while their 0:01:00.639 --> 0:01:05.399 family was on a holiday. Within days, Leo lost the 0:01:05.439 --> 0:01:09.519 ability to move his body. He was transferred between hospitals 0:01:09.559 --> 0:01:13.319 in two states. He was eventually placed into an induced 0:01:13.439 --> 0:01:18.599 coma while doctors worked to understand what was happening. Leo 0:01:18.759 --> 0:01:23.159 was later diagnosed with an extremely rare autoimmune neurological condition 0:01:23.559 --> 0:01:27.759 that affects the brain and spinal cord. What followed was 0:01:27.879 --> 0:01:31.999 months in hospital, intensive treatment and the beginning of a 0:01:31.999 --> 0:01:38.199 long recovery that is still unfolding. This conversation traces the 0:01:38.319 --> 0:01:43.959 terrifying early days of Leo's illness, the uncertainty of intensive care, 0:01:45.239 --> 0:01:49.319 and the absolute heart of a warrior that's required to 0:01:49.399 --> 0:01:56.159 keep going when the future is unclear. This is Michelle Burgess, Hello, 0:01:57.119 --> 0:02:03.799 welcome to No Filter. Should I be scared, Well, you 0:02:03.879 --> 0:02:08.079 know what, there is nothing I can say or do 0:02:08.279 --> 0:02:12.039 to you. I don't imagine that would scare you more 0:02:12.119 --> 0:02:16.599 than the places that you have been with your youngest son, Leo. 0:02:17.599 --> 0:02:21.119 Would that be right, Yeah, it would be because I 0:02:21.279 --> 0:02:24.559 just have to give this some context for our listeners 0:02:25.399 --> 0:02:29.239 that when it's some ill befalls you as an adult 0:02:29.279 --> 0:02:32.679 in this world, you kind of it's hard, but you 0:02:32.719 --> 0:02:37.519 can navigate it because it's you. But when an illness 0:02:38.599 --> 0:02:43.679 or some kind of fatalistic ill befalls one of your children, yes. 0:02:44.679 --> 0:02:45.279 That is. 0:02:46.759 --> 0:02:52.999 One of the hardest crosses to bear. And I know 0:02:53.119 --> 0:02:55.559 that many of our listeners will be in situations where 0:02:55.559 --> 0:02:56.599 they have a. 0:02:56.599 --> 0:02:59.719 Child of their own or a child that they love. 0:03:01.199 --> 0:03:06.279 That has had some illness before them, yes, or some calamity, 0:03:07.759 --> 0:03:11.079 And the hearts of listeners will be with you as 0:03:11.119 --> 0:03:13.479 you take us on the journey that you've had with 0:03:13.599 --> 0:03:17.599 your youngest son, Leo, and we thank you in advance, 0:03:17.639 --> 0:03:21.879 and we acknowledge those who are listening, okay, because it's 0:03:21.919 --> 0:03:25.759 hard and what you've done is very hard and unexpected. 0:03:27.279 --> 0:03:32.119 Unexpected because of course, when you know, when you are 0:03:32.239 --> 0:03:34.999 enjoying the world as much as you can, which I 0:03:35.039 --> 0:03:36.479 believe that you were. 0:03:36.879 --> 0:03:39.079 In December twenty twenty four. 0:03:39.999 --> 0:03:44.439 Yes, yeah, we flew down to Tasmania on December twenty 0:03:45.079 --> 0:03:48.799 twenty four on New Ye's Eve because Leo wanted to 0:03:48.879 --> 0:03:52.679 have New Year's Eve at my sister's house on the 0:03:52.679 --> 0:03:53.479 northwest coast. 0:03:53.759 --> 0:03:55.919 So yeah, we flew down early in the morning. 0:03:56.479 --> 0:03:59.799 And so Leo at this point is how old he's 0:03:59.799 --> 0:04:01.799 ape right. 0:04:01.599 --> 0:04:04.039 And he's your second. You've also got Charlie. 0:04:04.679 --> 0:04:08.759 Yeah, so Charlie was fifteen at time, that's great, and 0:04:08.919 --> 0:04:12.839 Charlie was he was now he was down in Tasmania 0:04:12.879 --> 0:04:18.759 already because he was older, and Leo, with his neuro divergence, 0:04:19.399 --> 0:04:22.919 was very still, very attached to me, so there was. 0:04:23.599 --> 0:04:25.599 No way that he would go down there a lot, 0:04:25.599 --> 0:04:26.079 of course. 0:04:26.559 --> 0:04:29.519 So Charlie went down first and was with my family, 0:04:29.559 --> 0:04:31.279 and then Leo and I went down on. 0:04:31.239 --> 0:04:34.079 The thirty first, just because I had to work up 0:04:34.159 --> 0:04:34.879 until that point. 0:04:36.519 --> 0:04:40.679 So you go, you're looking forward to everything. 0:04:40.879 --> 0:04:43.359 Yes, absolutely, yeah. 0:04:43.759 --> 0:04:47.279 A glorious time, the new year. 0:04:48.519 --> 0:04:53.199 You reunited with your sister, Yeah, your beautiful boys. 0:04:53.159 --> 0:04:56.719 Yes, yeah, all my family live in Tasmania, so I 0:04:56.799 --> 0:04:59.359 get to see you all, everyone all at once. 0:04:59.639 --> 0:05:00.759 Yes, absolutely yes. 0:05:02.359 --> 0:05:11.479 And then what happened, Well, everything was okay until he 0:05:12.239 --> 0:05:16.039 became unwell on the fourth, like the evening of the fourth. However, 0:05:16.679 --> 0:05:20.399 looking back, the first kind of signs I think that 0:05:20.719 --> 0:05:25.719 were missed was the evening of the third of January. 0:05:25.799 --> 0:05:28.919 So only a few days after we arrived, and my 0:05:29.039 --> 0:05:31.319 sister and brother in law and I and Leo we 0:05:31.399 --> 0:05:35.159 went out for dinner and we kind of how is 0:05:35.159 --> 0:05:38.719 this going to go? Because he has ADHD and ASD. 0:05:39.439 --> 0:05:43.879 So situations like that are challenging for him. Yes, just anyway, 0:05:44.079 --> 0:05:45.639 but they can be navigated. 0:05:46.159 --> 0:05:50.119 Yeah, he seemed excited to go, so we thought, let's 0:05:50.159 --> 0:05:50.799 just try it. 0:05:50.999 --> 0:05:56.959 And he was fine. He just was drinking excessively. 0:05:57.039 --> 0:05:59.999 So you nor whenly go out to like country pubs 0:06:00.119 --> 0:06:04.399 and you get the jugs of water on the table. Yeah, 0:06:04.599 --> 0:06:08.039 two of those that night, Like we couldn't stop him drinking, 0:06:08.479 --> 0:06:10.479 and I was like, he's I know, that's the health 0:06:10.519 --> 0:06:13.599 risk in itself, Like that's I thought he was being silly, 0:06:13.679 --> 0:06:15.999 but I don't think he was now, I think that 0:06:16.159 --> 0:06:19.199 was something had already started happening to his body. 0:06:19.319 --> 0:06:23.719 But didn't think anything of it. And then the evening of. 0:06:23.679 --> 0:06:26.679 The fourth we like, we were staying at my sister's 0:06:26.719 --> 0:06:29.999 house and he was just chilling out on their couch 0:06:30.399 --> 0:06:34.759 watching YouTube and he's very still and quiet, and then 0:06:34.799 --> 0:06:36.999 he said, Mom, you know, can you carry me to bed? 0:06:37.039 --> 0:06:38.879 I don't feel well, which. 0:06:38.759 --> 0:06:41.119 I hadn't had to do for a long time. So 0:06:41.199 --> 0:06:45.159 I did, and I was like, well, you know, what's 0:06:45.279 --> 0:06:48.039 the matter. And he's like, you know, my I've got 0:06:48.039 --> 0:06:52.239 a headache. You know, my eyes hurt. You know, I 0:06:52.279 --> 0:06:52.999 feel really. 0:06:52.799 --> 0:06:57.359 Hot, and I had he doesn't sleep. 0:06:57.479 --> 0:06:59.519 He hadn't been sleeping very much because the sun doesn't 0:06:59.519 --> 0:07:03.319 set till about ten down in Tasmania. 0:07:02.519 --> 0:07:03.999 On the summer time. 0:07:04.759 --> 0:07:07.199 Yeah, and then he's up first thing to be with 0:07:07.319 --> 0:07:13.679 my sister's dogs. And he's always struggled to explain how 0:07:13.719 --> 0:07:16.719 he feels and where things hurt. So like, for an example, 0:07:16.759 --> 0:07:18.719 once he had a sore throat and he was telling 0:07:18.719 --> 0:07:21.279 me his neck really hurt, but it's a line of 0:07:21.359 --> 0:07:24.439 questions to find out that it was his throat that hurt. 0:07:25.239 --> 0:07:27.439 So when he said he had sore eyes, I was like, well, youah, 0:07:27.439 --> 0:07:31.319 no wonder because you're tired and they probably saw, you know. 0:07:31.359 --> 0:07:36.239 He slept all night and then woke up and we 0:07:36.319 --> 0:07:38.359 went for a swim, so I was like, oh, that's 0:07:38.559 --> 0:07:40.879 over and done with. But then when we came back, 0:07:40.919 --> 0:07:47.399 he vomited and was burning up again. So I my sister, 0:07:47.479 --> 0:07:48.879 having no kids, I was like, I need to go 0:07:48.959 --> 0:07:51.519 and get some Panda and Europan and I got like 0:07:51.559 --> 0:07:56.959 an influenza test and a COVID test and a thermometer, 0:07:58.039 --> 0:08:00.879 and like every like they came. The test came back negative, 0:08:00.879 --> 0:08:02.479 and then I did them again and they came back 0:08:02.519 --> 0:08:07.199 negative again, and he seemed kind of average, nothing different 0:08:07.239 --> 0:08:11.399 than like a virus type of thing. And the next 0:08:11.519 --> 0:08:14.199 day we stayed at. 0:08:13.999 --> 0:08:17.839 My parents' house about ten minutes away because it was 0:08:17.879 --> 0:08:21.639 a bit darker and quieter there, and but he hopped 0:08:21.719 --> 0:08:25.719 up and he was you know, watching his favorite TV shows, eating, 0:08:27.079 --> 0:08:30.999 and he seemed okay, and then he kind of crashed again. 0:08:32.199 --> 0:08:33.999 So it was weird. I was thinking, Oh, he's getting better, 0:08:33.999 --> 0:08:35.839 and then no, he was rushed again. 0:08:35.919 --> 0:08:41.399 So this went on for maybe two days, and you know, 0:08:41.559 --> 0:08:43.319 after that day, then the next day he wanted to 0:08:43.359 --> 0:08:45.119 go op shopping because he likes op shopping. 0:08:46.039 --> 0:08:47.159 And then that night. 0:08:47.639 --> 0:08:51.879 That's when I was like, something's not right, Like he 0:08:51.999 --> 0:08:53.839 was really really distraught. 0:08:53.919 --> 0:08:57.079 He he wouldn't drink for me anymore. He wouldn't let 0:08:57.119 --> 0:09:00.039 me put the I can't even think what that stuff's called. 0:09:00.039 --> 0:09:02.479 You know, when you dehydrated and you hydra light o 0:09:02.559 --> 0:09:05.159 the hydra line. He wouldn't even let me put that. 0:09:06.119 --> 0:09:08.559 And we were just in the dark the whole time. 0:09:08.639 --> 0:09:11.719 And then at one point I looked with my phone 0:09:11.879 --> 0:09:14.079 torch and I could see half of his body had 0:09:14.119 --> 0:09:16.199 this rash on it, so quickly took a photo. 0:09:16.439 --> 0:09:20.559 Then that disappeared, And in the morning, I called. 0:09:20.319 --> 0:09:21.919 The rash disappeared? Did it? 0:09:22.159 --> 0:09:22.639 Yeah? 0:09:22.799 --> 0:09:26.679 The rash disappeared right down the right side of his body, 0:09:26.759 --> 0:09:28.279 the entire right side of his body. 0:09:28.919 --> 0:09:33.759 And yeah, I called the healthline in the morning just. 0:09:33.679 --> 0:09:36.199 To see what they suggested, because I didn't want to 0:09:36.239 --> 0:09:39.279 take him to the emergency room and have him have 0:09:39.359 --> 0:09:44.039 to wait there if they were just home. And she said, 0:09:44.319 --> 0:09:47.959 we need to either get an ambulance and I'm knowing 0:09:48.519 --> 0:09:51.159 the situation there with the ambulance, it would have been 0:09:51.239 --> 0:09:52.479 quicker for me to drive him. 0:09:53.199 --> 0:09:56.079 And I was like, I want to have a bath first. 0:09:56.679 --> 0:09:58.839 This is okain, Like, I was like, oh no, we can't. 0:09:58.839 --> 0:10:01.519 We going to the hospital, and he hopped in the 0:10:01.519 --> 0:10:04.519 car and by the time we got there, he couldn't walk, 0:10:04.679 --> 0:10:06.439 and I had to get a wheelchair to bring him 0:10:06.439 --> 0:10:11.759 in to the emergency room. And I'd called my sister 0:10:12.239 --> 0:10:16.639 and she met me there and yeah, so he was 0:10:17.159 --> 0:10:18.839 just kind of passed out on the bed by the 0:10:18.879 --> 0:10:19.599 time we got there. 0:10:19.639 --> 0:10:24.759 And everybody, when you say he couldn't walk, he was 0:10:25.679 --> 0:10:28.519 too weak to walk at that point, in and out 0:10:28.519 --> 0:10:29.879 of consciousness or. 0:10:30.359 --> 0:10:35.839 Just so lethargic and weak, and yeah, he just didn't 0:10:35.839 --> 0:10:37.479 have the strength to even. 0:10:37.239 --> 0:10:38.039 Hop out of the car. 0:10:38.199 --> 0:10:41.839 So I went and got a wheelchair and brought it out, 0:10:43.119 --> 0:10:46.279 and once he was in, we didn't mate in the ear. 0:10:46.319 --> 0:10:48.559 I think they'd known of his arrival. 0:10:49.239 --> 0:10:52.599 They just rushed us out in the back and we're 0:10:52.639 --> 0:10:57.519 taking bloods and fluids and he was. 0:10:59.239 --> 0:11:00.239 So scared of needles. 0:11:00.279 --> 0:11:03.719 Anyways, the fact that he just laid there spoke volumes 0:11:03.719 --> 0:11:08.319 to me that he's something's this is odd I've got 0:11:08.519 --> 0:11:10.359 you know, I've seen my kids sick before, but this 0:11:10.479 --> 0:11:12.599 is something strangers happening here. 0:11:13.079 --> 0:11:15.599 And also you know at the hospital when they act 0:11:15.639 --> 0:11:16.479 with urgency. 0:11:17.719 --> 0:11:18.959 Yeah, it's not good. 0:11:19.919 --> 0:11:20.959 No, it's not good. 0:11:21.039 --> 0:11:24.279 And it's funny, isn't it, Because normally you'd be appreciative 0:11:24.319 --> 0:11:27.319 of it, but they vibrated a different sort of frequency. 0:11:27.999 --> 0:11:31.799 Yeah, I mean, and they everyone there was amazing that 0:11:33.919 --> 0:11:36.919 they had a They decided they needed to do a 0:11:36.959 --> 0:11:37.559 lumber punction. 0:11:37.679 --> 0:11:40.639 I'd never I didn't know what a lumber puncture was. 0:11:40.719 --> 0:11:41.279 I had no. 0:11:41.799 --> 0:11:44.239 Idea of where their thought process was going as to 0:11:44.319 --> 0:11:47.559 what might be wrong with Leo, as to why they 0:11:47.719 --> 0:11:49.399 might want to do the lumber puncture. 0:11:49.519 --> 0:11:54.279 So they gave him ketamine. 0:11:54.319 --> 0:11:57.719 So they gave him about a lot of ketamine to 0:11:58.279 --> 0:12:02.199 try and keep him still. And there were like doctors 0:12:02.199 --> 0:12:05.599 everywhere and nurses everywhere, and and Leo could still kind 0:12:05.639 --> 0:12:07.279 of talk like he's a fighter. 0:12:07.319 --> 0:12:10.079 He fought that ken of mean, he was not. He 0:12:10.159 --> 0:12:11.079 wasn't going to catch it. 0:12:11.439 --> 0:12:16.679 But they weren't successful with getting any fluid out of 0:12:16.759 --> 0:12:17.599 his spine. 0:12:18.079 --> 0:12:19.919 So what were they looking for at that point? 0:12:19.959 --> 0:12:22.359 Do you know? I know now I didn't know at 0:12:22.359 --> 0:12:23.759 the point at that time. 0:12:23.879 --> 0:12:26.759 So at that time, what I've learned is if you 0:12:26.839 --> 0:12:29.199 present to a hospital a hospital with like men in 0:12:29.279 --> 0:12:31.159 Chicockle type symptoms, they. 0:12:31.079 --> 0:12:33.599 All which was the rash and the yeah and the 0:12:33.639 --> 0:12:34.159 eye pain. 0:12:34.639 --> 0:12:37.799 They also they start to look for different autoimmune diseases. 0:12:38.719 --> 0:12:41.879 But I had no I didn't that. I just didn't 0:12:41.919 --> 0:12:44.239 even come into my mind. I just thought he had 0:12:44.239 --> 0:12:46.399 a virus and even at this point and then he'll 0:12:46.479 --> 0:12:50.959 get better, even with his eye pain. It wasn't until 0:12:50.999 --> 0:12:52.519 were in the hospital and I said, you know, the 0:12:52.559 --> 0:12:55.479 first day he was complaining about his eyes being sore, 0:12:55.519 --> 0:12:58.799 but he hasn't mentioned it since. And he goes there, 0:12:59.039 --> 0:13:01.319 Oh you know, they have been sorry. I wasn't just 0:13:01.639 --> 0:13:02.999 just he wasn't saying anything. 0:13:03.639 --> 0:13:08.879 So it was which of course is a very interesting 0:13:08.959 --> 0:13:12.199 glimpse into the mind of a child, from the mind 0:13:12.199 --> 0:13:17.279 of your boyo, because they also want to feel well, yes, 0:13:17.439 --> 0:13:19.359 and they don't want to do anything that's going to 0:13:19.399 --> 0:13:20.319 cause you alarm. 0:13:20.799 --> 0:13:21.599 Yes, that's correct. 0:13:21.759 --> 0:13:24.359 Yeah, And they don't want to do anything that might 0:13:24.519 --> 0:13:27.839 result in them going to hospital and being possibly away 0:13:27.919 --> 0:13:28.359 from you. 0:13:29.039 --> 0:13:32.119 Oh. Yes, So that was never going to be an issue. 0:13:32.279 --> 0:13:34.039 That would never have happened, that I would be away 0:13:34.079 --> 0:13:38.439 from him. He doesn't know that. And even after they 0:13:38.839 --> 0:13:42.039 weren't successful, like a few doctors tried to get the 0:13:42.119 --> 0:13:45.359 spinal fluid and they weren't successful, and they were like, 0:13:45.399 --> 0:13:48.079 you know, they said, we can't give him any more ketamene. 0:13:48.079 --> 0:13:50.359 He's had like five or six rounds of it now, 0:13:50.999 --> 0:13:52.679 and they were like, you know, he needs to just 0:13:52.799 --> 0:13:56.519 rest on his bed. He was swinging himself out of 0:13:56.519 --> 0:13:59.759 the bed, saying I'm leaving now, like I'm going, and. 0:13:59.959 --> 0:14:01.239 You know, they're like, you need to lay out. He 0:14:01.279 --> 0:14:02.479 won't be able to stand up. 0:14:02.559 --> 0:14:04.999 So but yeah, he swung himself off, kind of had 0:14:04.999 --> 0:14:07.919 to hold him up, just hold him there because he 0:14:07.959 --> 0:14:10.919 wasn't staying on that bed. He was determined he didn't 0:14:10.919 --> 0:14:12.919 want feed in that hospital at that point in time. 0:14:13.279 --> 0:14:17.519 And how are you at this point You're obviously just 0:14:18.639 --> 0:14:23.559 in the moment of trying to keep Leo calm and 0:14:23.919 --> 0:14:27.999 try and reassure him. Yes, but at this point you 0:14:28.119 --> 0:14:31.199 must have some escalating fear. 0:14:32.159 --> 0:14:32.639 I did. 0:14:32.919 --> 0:14:36.439 I I just didn't know what was happening. 0:14:36.519 --> 0:14:39.959 I'd never seen either of my children like this before. 0:14:40.759 --> 0:14:44.359 And the worry of the people there, but I still 0:14:44.399 --> 0:14:48.519 had this idea in my mind that he just got 0:14:48.559 --> 0:14:51.599 some virus and into given maybe any biotics or something, 0:14:51.639 --> 0:14:54.239 and then you know, in a few days he'll be better. 0:14:54.719 --> 0:14:54.919 You know. 0:14:54.959 --> 0:14:57.999 We were due to fly home, I think in a 0:14:58.079 --> 0:15:01.639 few days later, and I kept saying to the medical staff, Oh, 0:15:01.679 --> 0:15:04.039 should I cancel our flight or we'll be out of 0:15:04.079 --> 0:15:06.799 here but we and they're like, oh, we don't want 0:15:06.799 --> 0:15:08.399 to say yes or no, And I said I'll just 0:15:08.719 --> 0:15:09.159 keep it. 0:15:09.719 --> 0:15:12.679 But then one doctor who I always. 0:15:12.399 --> 0:15:14.319 Remember him, one doctor came in and when I asked, 0:15:14.319 --> 0:15:16.959 he was like, absolutely, you're not making that flight. He's like, 0:15:17.039 --> 0:15:19.359 he has to at least have been below the fort 0:15:20.279 --> 0:15:24.199 forty degrees fever for a few days before you can 0:15:24.239 --> 0:15:25.519 even think about leaving this. 0:15:25.599 --> 0:15:27.519 So I was like, okay, I've been told, now I'll 0:15:27.519 --> 0:15:28.359 cancel my flight. 0:15:28.559 --> 0:15:33.559 So yeah, that was that was when that's still not 0:15:33.879 --> 0:15:37.039 quite any concept of how long we would be there. 0:15:37.879 --> 0:15:40.679 Like at that point they said after the failed lumber 0:15:40.719 --> 0:15:43.479 puncture that they were we needed to stay a night 0:15:43.639 --> 0:15:45.839 and he'd go on to general and aesthetic the next 0:15:45.879 --> 0:15:48.639 day and we'd have an anetheesist come and and do 0:15:48.719 --> 0:15:49.439 the procedure. 0:15:49.639 --> 0:15:52.119 So yeah, I thought maybe one or two nights wo'd 0:15:52.199 --> 0:15:53.119 be there, so. 0:15:55.279 --> 0:15:57.399 You at this point are still hoping that you might 0:15:57.439 --> 0:15:58.479 make your flight home. 0:15:59.159 --> 0:16:01.159 Instead, what happened. 0:16:02.839 --> 0:16:06.839 Well, he just deteriorated very quickly at that hospital, I mean, 0:16:06.879 --> 0:16:09.199 and there was nothing to do with the treatment. It 0:16:09.239 --> 0:16:12.799 was just his condition. And they'd come into the room 0:16:12.839 --> 0:16:15.479 and they'd do all these tests like can you feel 0:16:15.479 --> 0:16:17.559 this on your legs? And you know, they'd shine the 0:16:17.639 --> 0:16:20.839 light in his eyes and something I got used to 0:16:20.919 --> 0:16:24.119 after many many months of it happening, and you know. 0:16:24.679 --> 0:16:25.679 Testing for strength. 0:16:25.759 --> 0:16:30.719 Then probably he said to me at one point when 0:16:30.799 --> 0:16:33.799 he needed to use the bathroom, like, I can't we 0:16:33.999 --> 0:16:36.079 properly because if you've got boys. 0:16:36.079 --> 0:16:37.559 Yes, I've got three boys. 0:16:37.639 --> 0:16:40.719 I've got three, so you know when they we they 0:16:40.719 --> 0:16:42.799 think it's fun to start and stuff and start and stop. 0:16:42.839 --> 0:16:44.719 So that's what. 0:16:45.079 --> 0:16:47.559 He was kind of doing. And I was thinking, oh, 0:16:47.039 --> 0:16:49.719 he's it's just a thing. I could hear him in 0:16:49.759 --> 0:16:51.079 the toilet do it. And then he said to me, 0:16:51.239 --> 0:16:54.559 I can't, like, I can't do we properly, and you know, 0:16:54.719 --> 0:16:57.919 so I try the water. And after about maybe two 0:16:57.999 --> 0:17:02.079 or three times that happening, I was like, maybe something's 0:17:02.239 --> 0:17:03.719 not right, so I told the nurse. 0:17:04.639 --> 0:17:05.159 She noted it. 0:17:05.399 --> 0:17:07.919 They were like, well, put the shower on. They were 0:17:07.959 --> 0:17:11.159 offering all these ideas, play this, blah blah blah. But 0:17:11.239 --> 0:17:14.759 he started to get he was getting sick up basically, 0:17:15.559 --> 0:17:19.439 and getting quite anxious about it. So I don't think 0:17:19.759 --> 0:17:21.799 either of us has slept very much at this point, 0:17:22.279 --> 0:17:25.519 and he wanted me in the little hospital bed with him. 0:17:25.679 --> 0:17:29.239 They're exhausting days, so exhausting. 0:17:29.439 --> 0:17:35.279 Yes, it's another level of tired, which just continued. Yeah, 0:17:35.399 --> 0:17:38.559 but at that point we were getting up every ten 0:17:38.639 --> 0:17:41.479 fifteen minutes because he would say, I need to go now, 0:17:41.919 --> 0:17:43.559 and so we'd kind of go into the bathroom. We 0:17:43.599 --> 0:17:45.719 had our own little room there, and we'd go into 0:17:45.759 --> 0:17:49.239 the bathroom and he'd try and then he'd stand there 0:17:49.279 --> 0:17:51.239 and then he'd sit down, and then he'd apologize to 0:17:51.279 --> 0:17:52.919 me and say, I'm so sorry, Mom, I can't go, 0:17:53.039 --> 0:17:55.479 and I'm like, you don't need to be you don't 0:17:55.519 --> 0:18:00.679 need to be sorry. It's like, it's okay. And they'd 0:18:00.679 --> 0:18:02.959 said if you can't, if you couldn't pass your EYND, 0:18:04.079 --> 0:18:07.879 they were going to try enemies. Maybe he was constipated, 0:18:08.199 --> 0:18:11.039 and then if that didn't work, they would insert a catheter, 0:18:11.879 --> 0:18:13.639 and so I think that's why I was encouraging him 0:18:13.639 --> 0:18:17.359 a lot to try and go, because I couldn't picture 0:18:17.519 --> 0:18:20.399 how he was going to cope having a catheter inserted, 0:18:20.599 --> 0:18:21.999 knowing how sensitive. 0:18:21.759 --> 0:18:25.319 That he is. But yeah, he got to that point. 0:18:28.759 --> 0:18:29.599 After the break. 0:18:29.919 --> 0:18:34.959 Michelle recalls the moment when Leo's condition rapidly declined and 0:18:34.999 --> 0:18:43.119 what happened after. So you're on this downhill descent now, 0:18:43.159 --> 0:18:46.399 whereas only a few days earlier you were celebrating with 0:18:46.439 --> 0:18:49.919 your family. Yes, and your boy, even though he had 0:18:49.919 --> 0:18:53.119 his challenges, was a normal eight year old boy. 0:18:53.559 --> 0:18:56.119 Yeah, all of life, having fun, and you know, he 0:18:56.159 --> 0:18:58.239 was running around. He loves my sister's dog, so he 0:18:58.319 --> 0:19:01.079 was always like running around with them. That he was 0:19:01.119 --> 0:19:02.679 getting up early in the morning to go out the 0:19:02.679 --> 0:19:04.719 dog flat door at the top of the stairs, go 0:19:04.759 --> 0:19:06.199 down down. 0:19:08.239 --> 0:19:11.959 Way with them. Like, Yeah, he was always on the go. 0:19:12.319 --> 0:19:15.439 And you know this, he'd look forward to this trip 0:19:15.839 --> 0:19:17.599 for such a long time because he had had a 0:19:17.599 --> 0:19:21.439 difficult year at school, which was the first he'd had 0:19:21.479 --> 0:19:25.519 a really difficult year at school, and this was you know, 0:19:25.559 --> 0:19:27.279 he was really excited for this trip. 0:19:27.359 --> 0:19:27.999 So it was. 0:19:29.559 --> 0:19:32.439 He was it was hard because I thought, you know, 0:19:32.439 --> 0:19:35.479 he only had a few days and you know now 0:19:35.479 --> 0:19:38.839 he hasn't really got to enjoy yet. But yeah, that 0:19:39.359 --> 0:19:43.119 kind of going back to that night when he was 0:19:43.199 --> 0:19:47.519 still trying to to go oilet, Yeah, because I've been 0:19:47.519 --> 0:19:49.759 getting up so much and you know, i'd get in there. 0:19:49.879 --> 0:19:52.199 At one point I heard him get up and he 0:19:52.319 --> 0:19:55.839 was on the side closest to the toilet door. And 0:19:55.879 --> 0:19:57.999 I still, even though I know and I've read the 0:19:57.999 --> 0:20:01.359 medical reports, I still kind of have this guilt that 0:20:03.039 --> 0:20:06.479 I should have been quicker almost because I was like 0:20:06.759 --> 0:20:08.759 so tired, so kind of you know, you get yourself 0:20:08.799 --> 0:20:11.679 out of bed. And by the time I kind of 0:20:11.759 --> 0:20:15.599 stood up the door, he was in the bathroom and 0:20:15.679 --> 0:20:18.719 the door was closed, and then I just heard this 0:20:19.919 --> 0:20:24.839 the biggest like smashed against the door, and I just 0:20:24.919 --> 0:20:27.199 screamed because I knew he hit his head on the 0:20:27.199 --> 0:20:30.319 door collapsed, Yeah, and I just screamed for the nurses. 0:20:30.359 --> 0:20:32.399 I can't remember if there was a button or something. 0:20:32.919 --> 0:20:34.559 I mean, they had to a bank, so just remember 0:20:34.559 --> 0:20:38.279 they rushed in and like when we opened the door, 0:20:39.519 --> 0:20:41.319 he was just kind of there on the ground and 0:20:41.359 --> 0:20:44.599 he wasn't even responsive to it. Like it was like 0:20:44.679 --> 0:20:47.559 nothing had happened. But this this was seriously so loud. 0:20:48.119 --> 0:20:51.919 So he hid his head with such force and I 0:20:52.039 --> 0:20:52.759 just thought. 0:20:52.679 --> 0:20:53.879 He was unconscious. 0:20:54.159 --> 0:20:56.279 No, he wasn't, or had he passed? 0:20:56.439 --> 0:20:57.839 Had he passed out? 0:20:57.919 --> 0:21:00.919 When he he may collapsed or yeah he made and 0:21:00.999 --> 0:21:03.559 he had No he didn't even know that it had 0:21:03.599 --> 0:21:06.999 happened because when the nurses were there asking, you know, 0:21:07.079 --> 0:21:11.679 doing their valuation type of thing, it was as if 0:21:11.719 --> 0:21:12.559 nothing had happened. 0:21:12.679 --> 0:21:15.879 Now that I'm never going over how loud that was, 0:21:15.919 --> 0:21:20.679 like that would have really really hurt. And you know, 0:21:20.719 --> 0:21:23.119 then he still couldn't do anything. So that's when they suggested, like, 0:21:23.519 --> 0:21:25.799 we'll get the chair and he can sit in the shower. 0:21:25.879 --> 0:21:29.119 Maybe that will help. And that was the first time 0:21:29.519 --> 0:21:33.599 he started. He said to me, where are my swords? Mum? 0:21:34.279 --> 0:21:36.959 And I was thinking because he hit. 0:21:36.919 --> 0:21:38.519 His head, and I was like, oh, wish, he's my 0:21:38.559 --> 0:21:41.479 three swords. Where are my three swords gone? And you know, 0:21:41.519 --> 0:21:43.199 he went to worry. So I was like, I'm not sure, 0:21:43.399 --> 0:21:45.999