Latest / Tom's Hirschsprung's Podcast / Episode 88 - With Sadie Goldthorpe
Transcript
- 0:02Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
- 0:05Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
- 0:09Speaker 1: live with it, care for someone who has it, or
- 0:12Speaker 1: just want to understand more, this podcast is for you.
- 0:15Speaker 1: Each episode, we will explore real stories and honest conversations
- 0:19Speaker 1: about a condition that often goes unheard. Thank you for
- 0:22Speaker 1: tuning in. Hello, and welcome to episode eighty eight of
- 0:48Speaker 1: Tom's Hirshbrungs Podcast. I'm delighted to be joined in Hirshbrung's
- 0:53Speaker 1: Awareness Month by Sadie Goldthorp. Sadie, welcome to the podcast.
- 0:57Speaker 2: Hello, how are you very well?
- 1:00Speaker 1: And a happy Hirshbrungs Awareness Month as this goes out,
- 1:06Speaker 1: and we're here to talk about your four year old son,
- 1:09Speaker 1: Cody and his experience with Hirshbrung's disease. And I guess
- 1:16Speaker 1: where we'll kind of start will be with you sort
- 1:20Speaker 1: of around ten weeks pregnant, Is that right?
- 1:23Speaker 2: Yeah? I just had my bloods where they do all
- 1:27Speaker 2: the screenings, and Cody is actually my second born. I
- 1:32Speaker 2: have a six year old little boy, no problems they're
- 1:38Speaker 2: at all, So I was expecting second pregnancy, everything to
- 1:42Speaker 2: be fine. But I got a phone call just after
- 1:44Speaker 2: the ten weeks bloods and it came back that Cody's
- 1:48Speaker 2: bloods was one in eight for down syndrome. I mean,
- 1:52Speaker 2: not all, what's what's what's happened? And we went and
- 1:56Speaker 2: had the further tests and it actually came back back
- 1:59Speaker 2: he didn't have down syndrome, but but definitely something was
- 2:04Speaker 2: picked up. So throughout the pregnancy, I thought, oh, it
- 2:08Speaker 2: was always a concern or not concern or worry. I
- 2:11Speaker 2: should say I was worried, but I was like, no,
- 2:14Speaker 2: we have to go for They've done my blood, they've
- 2:16Speaker 2: done extra blood, sextual testing, and he hasn't got down syndrome.
- 2:21Speaker 2: I still convinced something was picked up there, but something
- 2:26Speaker 2: was was was a miss. I. I don't know how
- 2:29Speaker 2: true this is, but I think I've heard someone say
- 2:32Speaker 2: that one in eight children with Hirshbrun disease have Down syndrome.
- 2:39Speaker 1: Yeah, it sounds sounds roughly right.
- 2:41Speaker 2: I can't remember no exact fact, but I but obviously
- 2:46Speaker 2: we've never heard of Hushbrun disease before.
- 2:49Speaker 3: So there he came pregnant bang on his third due date,
- 2:56Speaker 3: and yeah, every everything seemed okay for the first ten hours.
- 3:04Speaker 2: It was it was covid. I found out I was
- 3:06Speaker 2: pregnant when the day of the pubs opened. Oh, but
- 3:14Speaker 2: it was. Yeah, the pregnancy was absolutely fine. Bar that
- 3:20Speaker 2: the worry that we had in the beginning, and it
- 3:22Speaker 2: was still at the back of my mind throughout. But
- 3:24Speaker 2: the main concern we had was would my husband be
- 3:26Speaker 2: able to come to the hospital. What when Cody was
- 3:31Speaker 2: being born, Because we went back straight into lockdown again
- 3:36Speaker 2: and we went to the hospital. My waters had broke,
- 3:39Speaker 2: and I said, do you have your own labor your
- 3:40Speaker 2: husband coming? It was like, brilliant, this is all going
- 3:42Speaker 2: to go to plan. He can be there. Cody was born,
- 3:47Speaker 2: everything was fine. My husband had to go home. I
- 3:49Speaker 2: went back to the water. I remember messaging he drunk
- 3:54Speaker 2: a bottle of formula when he was born, so everything
- 4:01Speaker 2: was just going to clown. They did his checks, brilliant.
- 4:06Speaker 2: My husband went home and I remember messaging him saying, oh,
- 4:10Speaker 2: I think we had a sicky baby, because he was
- 4:13Speaker 2: being sick quite a lot and we didn't have that
- 4:15Speaker 2: with Zach and we were just I was just going
- 4:18Speaker 2: through baby grows. After baby grows, I think I've packed
- 4:20Speaker 2: about six and within an hour they were all gone.
- 4:26Speaker 2: So I message Addie and I said that when you
- 4:28Speaker 2: come up, you bring more more clothes. But it was
- 4:31Speaker 2: kind of funny color sick, but I thought, okay, maybe
- 4:34Speaker 2: I called the n SO that and they were like, oh,
- 4:37Speaker 2: this truppy is clearing everything from the berth and I'd
- 4:43Speaker 2: lay him down and I was always be looking. I
- 4:45Speaker 2: was like, he's not crying, doesn't doesn't want photosoft. About
- 4:50Speaker 2: ten hours had passed and they still didn't want any milk,
- 4:53Speaker 2: but he was still when I was picking up just
- 4:54Speaker 2: being sick. They at the hospital actually me back my
- 5:00Speaker 2: notes and I'd gone to the counter. There's the NURST
- 5:06Speaker 2: station eleven times in twelve hours, saying there's something not
- 5:11Speaker 2: quite right. And it was really frustrated because I wasn't
- 5:17Speaker 2: I didn't know if it was me thinking, Okay, I
- 5:19Speaker 2: know all babies are different, and maybe I should compare
- 5:21Speaker 2: him to Zach, but I just something didn't feel right.
- 5:26Speaker 2: And with all this sickness. Andy then came back to
- 5:29Speaker 2: the hospital, tried to give him some milk, wouldn't take it,
- 5:32Speaker 2: and he was like, no, it's all fine. I was like,
- 5:37Speaker 2: I don't know. And then the nurse came and said
- 5:38Speaker 2: that you can go home, and I was like, he
- 5:40Speaker 2: hasn't who's' is not drinking? I don't actually want to
- 5:43Speaker 2: go home. And I was like, okay, let's just stay
- 5:48Speaker 2: in overnight because it's now coming to night time. Staying overnight,
- 5:52Speaker 2: and I remember going back to the nurse station, but
- 5:55Speaker 2: I said, look, we need someone needs to have a
- 5:57Speaker 2: look at him. I can't feed him, he's not crying,
- 5:59Speaker 2: he doesn't want to food, but some needs to look
- 6:00Speaker 2: at him and just take an eye on him because
- 6:03Speaker 2: I'm really concerned. A few hours later, a NICO nurse
- 6:09Speaker 2: came up with different teats of bottles to try and
- 6:12Speaker 2: see if they could change that, see if he would
- 6:14Speaker 2: take it. I even said that I wasn't going to breastfeed,
- 6:17Speaker 2: but I will breastfeed like I will try and do anything.
- 6:22Speaker 2: But it didn't go to plan with my first so
- 6:24Speaker 2: I'd already then set in mind that I wasn't going
- 6:27Speaker 2: to breastfeed. And they then had to get to a
- 6:34Speaker 2: blood blood test like a sugar test, and they just
- 6:38Speaker 2: took him in and then everything came back okay, and
- 6:41Speaker 2: they were like, oh, I don't know a few hours
- 6:44Speaker 2: passed and I didn't really understand what was going on,
- 6:46Speaker 2: but he was just still constantly being sick, still this
- 6:49Speaker 2: color coming up. At about four o'clock in the morning,
- 6:54Speaker 2: went down to intensive care because they wanted to do
- 6:56Speaker 2: an X ray on him, and I said, okay, what's
- 7:01Speaker 2: going to happen? And it was really traumatic. They literally
- 7:05Speaker 2: just cut open his arm to get blood and they're like, Mum,
- 7:09Speaker 2: you're going to go now. You're going to go back
- 7:11Speaker 2: to the war to have a cup of tea and
- 7:14Speaker 2: then come back at nine when everything's opened and you'll
- 7:19Speaker 2: be able to take Cody back to the ward. So
- 7:21Speaker 2: I was like, Okay, they're just going to do a
- 7:24Speaker 2: few casts. Everything's going to be fine. When I went
- 7:27Speaker 2: back to the war, they had moved me into a
- 7:28Speaker 2: ward on my own where there was no other people,
- 7:31Speaker 2: so I didn't have to see other parents with their children.
- 7:34Speaker 2: And I'm bringing and and I'm like, this is what's
- 7:36Speaker 2: going on, and I'm a bit beside myself now, I'm
- 7:39Speaker 2: thinking what I think. I think my milk was coming
- 7:42Speaker 2: in as well. I was just thinking, I don't understand
- 7:45Speaker 2: and what's going on, and no one, we couldn't I
- 7:48Speaker 2: was talking to my mom and my mom was sending
- 7:50Speaker 2: me links on my phone. Could it be this, could
- 7:52Speaker 2: it be that? And it was all just a guessing game.
- 7:54Speaker 2: We just didn't know. So I went back down at
- 7:59Speaker 2: nine bang on the darts and I said, oh, mum,
- 8:01Speaker 2: he's over there, and they pointed to one of the
- 8:03Speaker 2: incubators and I said, oh, no, he's not staying down here.
- 8:07Speaker 2: He was just in there having X RAYL scans. He
- 8:11Speaker 2: wasn't staying down here, and then went he is, and
- 8:15Speaker 2: I was like, So they walked me to him and
- 8:17Speaker 2: there he was in the incubator fully all two nose
- 8:22Speaker 2: and everything, and they were like, do you want to
- 8:25Speaker 2: have a cuddor and I said no, I didn't want
- 8:26Speaker 2: to move him. You know, with you, they've got all
- 8:28Speaker 2: the true And it was a real shock to me,
- 8:30Speaker 2: real shock. And I said, look, dad, there's only one
- 8:35Speaker 2: of you at a time. And I said, what's going on,
- 8:39Speaker 2: what's wrong? And they're like, we don't know. So because
- 8:41Speaker 2: it was COVID only, they'd only let one of us
- 8:45Speaker 2: there at the time. So I was going back up
- 8:49Speaker 2: to the ward and he was coming to the hospital
- 8:52Speaker 2: and he spent a couple of hours with him, and
- 8:54Speaker 2: I was coming back down and they said, right, you
- 8:56Speaker 2: can be discharged. I was like, I need to go.
- 8:59Speaker 2: I don't want to be this ward. Yes, so I
- 9:02Speaker 2: kind of discharged myself. I mean, we're just taking it
- 9:06Speaker 2: in turns throughout the day. And I said, they said, look,
- 9:10Speaker 2: and then all day we were there, still not getting
- 9:13Speaker 2: any anything, not understanding fully what's coming on. Still hadn't
- 9:16Speaker 2: gone to flu. Never E've heard of persh bunks, wasn't
- 9:20Speaker 2: even mentioned at this point. So I said, what's what's happening?
- 9:26Speaker 2: Do you know anything? And they said, we're talking to Oxford,
- 9:30Speaker 2: We're talking to the children's hospital. So I was like, okay,
- 9:32Speaker 2: they're going to talk to the hospital trying they're getting
- 9:36Speaker 2: a bit more information. And they're like, look, you need
- 9:39Speaker 2: to go home. You can't stay both of you can't
- 9:41Speaker 2: stay here. Go home. We'll call you and then just
- 9:44Speaker 2: if anything changes or if you're needed, and then come
- 9:47Speaker 2: back tomorrow morning. So I didn't want to go, but
- 9:53Speaker 2: we did, but I thought I need to see Zach.
- 9:55Speaker 2: I need to see Zach. But it might might be
- 9:57Speaker 2: was two two and a half at the time point,
- 10:00Speaker 2: and I got home and Andy was like on the
- 10:04Speaker 2: journey on the way home was just terrible. It was
- 10:06Speaker 2: complete silence apart from one sentence was I'm really sorry.
- 10:09Speaker 2: All the baby stuff is out, and I'd had flowers
- 10:12Speaker 2: and ballooms delivered that day when people hadn't been there.
- 10:16Speaker 2: But I was coming home without baby, and I think
- 10:18Speaker 2: that really hit. That's something. It's all been a bit
- 10:22Speaker 2: of a blur and we're just on survival mode. So
- 10:27Speaker 2: I got home. We got home and I saw Zach
- 10:29Speaker 2: and that was amazing, and it's just you're still baby,
- 10:33Speaker 2: still in your tummy. I said, yeah. So I couldn't
- 10:35Speaker 2: even tell him that Cody had been born because I
- 10:38Speaker 2: didn't know what was going to happen, and I just couldn't.
- 10:42Speaker 2: I just did. I didn't know what to say. I
- 10:43Speaker 2: hadn't even discussed what we were going to say. I said,
- 10:45Speaker 2: not yet. In hindsight, think God did cheek. I must
- 10:50Speaker 2: have still looked nine months pregnant, but we'll go with it.
- 10:55Speaker 2: So he came. So I just gave a massive hug
- 10:59Speaker 2: and it was bed time, so he went to bed,
- 11:02Speaker 2: and I remember I went to the kitchen and I
- 11:06Speaker 2: a long time ago, I'm on and off antidepressants. Antidepressants
- 11:10Speaker 2: and anxiety medication since since the birth of Zach, and
- 11:15Speaker 2: I thought, I'm going to I need some MEDICAI, I
- 11:19Speaker 2: need my medicine because I'm going to ring the doctor
- 11:21Speaker 2: first thing and get all my meds because I don't
- 11:23Speaker 2: know what's to come and I don't know how I'm
- 11:24Speaker 2: going to handle all of this. So I went straight
- 11:27Speaker 2: to the carpboards, got my antidepressants and an anxiety tablet
- 11:31Speaker 2: and I literally got a shot of water her and
- 11:34Speaker 2: just did the two tablets together with a vodka just
- 11:37Speaker 2: to try and calm me. Get back in the room.
- 11:41Speaker 2: Terrible to admit that that's what I did, but I
- 11:45Speaker 2: did because I just just needed to either knock myself
- 11:48Speaker 2: out or just I was. It was coping survival that
- 11:52Speaker 2: was in bed. At eight o'clock, I rang the hospital
- 11:56Speaker 2: and I said, I said, I just want to check
- 11:57Speaker 2: his cody. Okay, has anything happened? And I've only been
- 12:01Speaker 2: home about an hour an hour and a half and
- 12:03Speaker 2: they're like, oh, miscold thought, thank you for calling. We've
- 12:07Speaker 2: been trying to call you. Now. I have been glued
- 12:09Speaker 2: to my phone and I haven't had a mystical in
- 12:11Speaker 2: law's my husband, And they said, can you come back.
- 12:15Speaker 2: Cody's going to Oxford and I was like, okay, she said,
- 12:20Speaker 2: waiting for the ambulance. It could be several hours, but
- 12:23Speaker 2: come back. We're going to go straight to the he's
- 12:26Speaker 2: going to go be transferred to Oxford Children's Hospital. So luckily,
- 12:31Speaker 2: when my brother in law was living next door to us,
- 12:33Speaker 2: she came over so that to have my oldest and
- 12:35Speaker 2: Andy hadn't had the shot of vodka. Drove us back
- 12:39Speaker 2: to the hospital. Got to the hospital and the doctor
- 12:43Speaker 2: was there waiting and he said, Mum, I need you
- 12:45Speaker 2: all the blood. And I was like, okay, that's fine,
- 12:49Speaker 2: and I couldn't understand what I said. But I've had prozac,
- 12:53Speaker 2: a per panel and a shot of vodka. I'm literally
- 12:56Speaker 2: just wibbling a part of this boy, and like that's okay.
- 12:59Speaker 2: Needs marketing really can't. Like. He was a really kind
- 13:02Speaker 2: doctor took my blood and they might we just need
- 13:05Speaker 2: to wait for the ambulance and they're going to go
- 13:07Speaker 2: to Oxford children and they're going to run more texts.
- 13:09Speaker 2: Still didn't know what was wrong, and I said, look,
- 13:15Speaker 2: we've got the car with the baby seat, we'll take him.
- 13:18Speaker 2: And they're like, no, we have to wait for the ambulance,
- 13:20Speaker 2: and I was like, but if you if other children
- 13:24Speaker 2: need that ambulance, we've got the seat. We can just
- 13:27Speaker 2: trap him in and take him. I was not fully
- 13:30Speaker 2: aware of the machinery that Cody was going to be
- 13:34Speaker 2: going into. It was just break out at the start.
- 13:38Speaker 2: I'd never seen anything like it, and even now I
- 13:40Speaker 2: still google so I think there's only a few in
- 13:43Speaker 2: the country like it. And what if The nurse said,
- 13:47Speaker 2: would you like to take a picture? And I was like, no,
- 13:50Speaker 2: I don't want a picture of my son in this machine.
- 13:55Speaker 2: It was all really surreal, really really surreal, and the
- 13:58Speaker 2: paramedic said, don't follow us, and I was like why,
- 14:03Speaker 2: And then like, if we put on our lights would
- 14:06Speaker 2: necessarily be for Cody because we have to go to
- 14:09Speaker 2: another job. It's going to scare you. So rather you
- 14:14Speaker 2: can you just hang back ten minutes and let I
- 14:16Speaker 2: must get there before you leave the hospital. Forty minutes
- 14:20Speaker 2: from the hospital to where we were going. So again,
- 14:24Speaker 2: it was just it was about four o'clock in the morning,
- 14:27Speaker 2: it's raining, it was dark. It was just a really
- 14:30Speaker 2: bad journey. And again only one parent can go into
- 14:33Speaker 2: the ward, so I and he said, I will stay
- 14:37Speaker 2: in the car, try and get some sleep, and I'll
- 14:40Speaker 2: wait for you. Both. We honestly thought we were going
- 14:44Speaker 2: to the hospital to have further test and Cody would
- 14:46Speaker 2: be coming home and and he was waiting in the car,
- 14:50Speaker 2: He was waiting in the car park for us. Soon
- 14:53Speaker 2: as I got on the ward, there he was in
- 14:57Speaker 2: the bed, not in the incubator this time. I'm still
- 15:00Speaker 2: was hooked up with everything, and they were like, we're
- 15:04Speaker 2: going to do a wash out and I've never heard
- 15:08Speaker 2: of this before, never seen this, and I'm like, Mum,
- 15:12Speaker 2: you need to crash the top of the bed and
- 15:13Speaker 2: put this sugar liquid in his mouth just I don't know,
- 15:20Speaker 2: I don't know why. I think it's just it's calm
- 15:22Speaker 2: and it's just sweet for them.
- 15:26Speaker 4: And then I'd never I was not prepared for what
- 15:30Speaker 4: I had just witnessed this irrigate and I thought, little
- 15:35Speaker 4: did I know I'd be doing that twice a day
- 15:37Speaker 4: to keep him alive till he had his walkthrough.
- 15:41Speaker 2: And I was just horror, like more mortified. I couldn't
- 15:45Speaker 2: stop crying. I was in a real, real, real tears.
- 15:49Speaker 2: And one of the doctors said he's going to have
- 15:52Speaker 2: the bioxy tomorrow. We think he might have her strong disease,
- 15:56Speaker 2: but don't google it. I couldn't remember what she said,
- 16:02Speaker 2: and I thought, I have to google it, and I'm
- 16:04Speaker 2: on the phone thinking, babies, not that this has happened.
- 16:07Speaker 2: This has happened. And it came hermes and I was like,
- 16:09Speaker 2: that's what she said, and we googled it and I
- 16:12Speaker 2: still just didn't I couldn't even say it. I was
- 16:15Speaker 2: it was just so and I was went on. I couldn't.
- 16:18Speaker 2: I could not hold Cody, but he was just trus
- 16:21Speaker 2: just happened. I wasn't even feeding him. I just had
- 16:23Speaker 2: to talk to him. He had his bioxy, who then
- 16:27Speaker 2: had to wait for the results. But whilst he was
- 16:29Speaker 2: in hospital, we had I kept saying it was one
- 16:34Speaker 2: in eight chance of Down syndrome. Has he got Down syndrome?
- 16:37Speaker 2: Because you know, when you're trying to just think or
- 16:39Speaker 2: give them by ideas. But I said to one one doctor,
- 16:44Speaker 2: I did have you thought it could be entered, like
- 16:46Speaker 2: not even knowing that I would be so aware of
- 16:48Speaker 2: that and that was going to come down the line.
- 16:50Speaker 2: But I was just trying to think of anything it
- 16:53Speaker 2: could be. But the following day after his biosy. The
- 17:00Speaker 2: the ear specialists had come around because he hadn't had
- 17:03Speaker 2: a hearing check. They came and they said they got
- 17:10Speaker 2: they got a reading from visit from the left ear
- 17:14Speaker 2: the right, and I'm like, we can't get anything. So
- 17:18Speaker 2: they went and got more machinery did both and like
- 17:22Speaker 2: they're not and they said, Mom. They kept calling me, Mum, Mum.
- 17:28Speaker 2: We don't think Cody can hear. We think he's death
- 17:32Speaker 2: and I don't know what. I literally just scranged and
- 17:39Speaker 2: I said what now? What? What? What now? I could say?
- 17:42Speaker 2: So I think I've been comforting him for the last
- 17:45Speaker 2: seventy two hours and talking to him and he hasn't
- 17:48Speaker 2: even heard. And I literally it was a noise that
- 17:53Speaker 2: I made that it was just it was just horrendous.
- 17:57Speaker 2: And then they got someone more seeing another senior doctors.
- 18:00Speaker 2: I'm in and do it and they're like, he can here.
- 18:02Speaker 2: So I then had I was just I messaged and
- 18:06Speaker 2: and I was like, this is terrible how to break
- 18:09Speaker 2: the news to someone. But I went he's now deaf
- 18:13Speaker 2: because I thought, I like what it was just it
- 18:18Speaker 2: was just high low, high low. But I had to
- 18:22Speaker 2: days days went past, and I was there while they
- 18:24Speaker 2: were doing the washouts and like, mom, you need to
- 18:26Speaker 2: learn how to do this. I can't want to learn.
- 18:28Speaker 2: I didn't want to be doing this. I don't want
- 18:30Speaker 2: to be a nurse to my child. I wanted to
- 18:32Speaker 2: be a mum. But then I realized that's that my
- 18:35Speaker 2: mindset had to change quite quickly, and I had to
- 18:37Speaker 2: jump on board that this is what we're dealing with.
- 18:40Speaker 2: But I didn't want any Like, but don't think he
- 18:42Speaker 2: didn't want any of this. No one wants any of this.
- 18:45Speaker 2: And then you kind of have a reality check because
- 18:47Speaker 2: you're in the hospital and you're seeing a lot of
- 18:50Speaker 2: really poorly sick children and you look at you and
- 18:54Speaker 2: thinking they're really ill. But we were going for lots
- 18:58Speaker 2: of tests and there was a mom and a daughter
- 19:02Speaker 2: in the lift with us, and the mom said, pulled
- 19:05Speaker 2: the daughter away and said, don't stare, don't stare, he's
- 19:10Speaker 2: he's really sick. And it kind of I was like,
- 19:13Speaker 2: we're talking about my son like he's really sick, because
- 19:16Speaker 2: he must have looked really sick. It then got confirmed
- 19:21Speaker 2: that he had hirshprung disease. We needed to learn. They
- 19:24Speaker 2: wasn't gonna let us go until he started tolerating some feeds.
- 19:28Speaker 2: We don't wash outs. We were there for three three
- 19:33Speaker 2: and a half weeks and he couldn't and he didn't
- 19:36Speaker 2: see him. He don't worry, he wasn't sitting in a
- 19:39Speaker 2: car park. Didn't know that day and was like, he's
- 19:45Speaker 2: not coming home. He's not coming home. And then Andy
- 19:48Speaker 2: didn't see him, and he's had his whole paternity leave,
- 19:53Speaker 2: just with my eldest, just with Zach, and he was like,
- 19:56Speaker 2: he's not coming home. And we there and then one
- 20:01Speaker 2: of the nurses said, dad can because I was doing
- 20:05Speaker 2: I was literally doing day shift. It was awful, was
- 20:08Speaker 2: getting there for eight half day but leaving there at
- 20:10Speaker 2: five to get home for Zach. And Zach this whole
- 20:13Speaker 2: time still thought I was pregnant. It was, it was
- 20:17Speaker 2: just but I still we still couldn't say he was
- 20:20Speaker 2: here because this isn't the wow ande it was. I
- 20:23Speaker 2: didn't actually know it. I said, I don't want to
- 20:25Speaker 2: get him christened. But we didn't know if he would
- 20:29Speaker 2: even be here to be christened, because every day something changed.
- 20:33Speaker 2: Every day there was something else, something new, and he
- 20:35Speaker 2: just wasn't coming home. And he then went. The nurse
- 20:41Speaker 2: came in and said to me, did you know because
- 20:43Speaker 2: he's been here, he's now class as a long stay
- 20:46Speaker 2: your your husband can come And I don't know if
- 20:51Speaker 2: he had to do forty eight hours, he had to
- 20:53Speaker 2: do two days at a tide, but he can come
- 20:55Speaker 2: and see Cody. So I can't remember that the facts.
- 21:00Speaker 2: But and you went and spent the day with Cody.
- 21:02Speaker 2: But I was really like, you need to make sure
- 21:04Speaker 2: it's this, this, we do this, we do this because
- 21:06Speaker 2: he hasn't seen his son. He hadn't seen him. So
- 21:09Speaker 2: that was lovely but also really hard. And we kind
- 21:15Speaker 2: of changed it that it was two days two days
- 21:17Speaker 2: to two days on two days, things like ship work. Yeah,
- 21:22Speaker 2: And one morning Andy got there and he messaged me
- 21:28Speaker 2: and said, they've said that Cody can come home for
- 21:31Speaker 2: the day because they've done his wash out, but you
- 21:34Speaker 2: have to have to bring him back for his wash out.
- 21:38Speaker 2: But I've told them no, he's probably best here. I
- 21:43Speaker 2: think we were just petrified. But I ran him. I said,
- 21:47Speaker 2: what do you mean You said no? And then well
- 21:50Speaker 2: we don't what will we do? And I said, he's
- 21:54Speaker 2: coming home. You've made a mister, And he had to
- 21:57Speaker 2: go to the state their station. I think I've made mistake.
- 22:00Speaker 2: My wife said, we're bringing him home. So it was
- 22:06Speaker 2: just that's when Zach was there and we could say,
- 22:09Speaker 2: let's meet your brother. And it was just the most
- 22:12Speaker 2: specialist day. But also we were on edge, like we
- 22:17Speaker 2: were on edge, but we didn't have to really do anything.
- 22:20Speaker 2: Just we were just like, is he drinking but we didn't.
- 22:22Speaker 2: He wasn't doesn't need happings to change because he wasn't poohing.
- 22:26Speaker 2: And then he went back to hospital. But that's when
- 22:29Speaker 2: it started to slowly get a bit easy, well I
- 22:32Speaker 2: say easier. We then learned how to do the irrigation.
- 22:36Speaker 2: We knew if we had a bad wash out in
- 22:40Speaker 2: the morning, and we knew if the one in the
- 22:42Speaker 2: evening wasn't good, we were back in hospital right so
- 22:48Speaker 2: there was a lot of tin and throwing. Most of
- 22:51Speaker 2: the time, it all did go well, but it was
- 22:54Speaker 2: very They they I think that hospital they use a
- 22:57Speaker 2: lot more saline, a lot more equipment, and they go
- 23:00Speaker 2: where we were it too scared to go as high
- 23:02Speaker 2: as they do. They just do it, and they can
- 23:04Speaker 2: do it really forceful and give them a real good
- 23:06Speaker 2: flash out. But are the medical the medical equipment in
- 23:13Speaker 2: the house, the set up for it the height, you know,
- 23:17Speaker 2: keep Zach was just out. We did it when Zach
- 23:19Speaker 2: shaving his breakfast, so he was just in front of
- 23:21Speaker 2: a telly, so he didn't he would never let anyone
- 23:24Speaker 2: see it.
- 23:25Speaker 1: It was.
- 23:26Speaker 2: It was just really, really hard. And then I started
- 23:29Speaker 2: doing things with with Zach with Cody, and I'd get asked,
- 23:34Speaker 2: do you think he's going to live? Do you think
- 23:37Speaker 2: he'll die? And there were literally ask him to my face.
- 23:41Speaker 2: Some people were like he's really poorly, like do do
- 23:43Speaker 2: you think he's going to make it? It was it
- 23:47Speaker 2: was really it was just awful. And then then we
- 23:51Speaker 2: had a couple of intracolitises, so another more hospital stays,
- 23:57Speaker 2: but we knew what to do. The first time he dentricalitis,
- 24:00Speaker 2: we took him to a local hospital because we thought
- 24:03Speaker 2: we can't waste time, but they didn't understand we were
- 24:07Speaker 2: talking about or what he had or what's going to happen,
- 24:10Speaker 2: So we just learned to go straight to the main hospital.
- 24:15Speaker 2: They've been absolutely fantastic. They've got four months. He had
- 24:18Speaker 2: his full through. I keep it. I've never been told
- 24:25Speaker 2: if he has short segment or long segment. I think
- 24:27Speaker 2: that is I don't know if it's They've never actually
- 24:29Speaker 2: told me and I've never actually asked, but I believe
- 24:32Speaker 2: it's going to be short because it was. They told
- 24:35Speaker 2: me it was a third of his colon, and I
- 24:37Speaker 2: think it was twenty two centimeters that was removed.
- 24:42Speaker 1: That sounds about right. I mean I have spoken to
- 24:45Speaker 1: people before who when I say, oh, is it short,
- 24:49Speaker 1: is it long? Is it you know? Whatever, they go,
- 24:52Speaker 1: I don't because I don't think. I mean, the hospital
- 24:57Speaker 1: might be slightly different, but I don't think hospitals necessarily
- 25:01Speaker 1: close it as short or long. They just say X
- 25:05Speaker 1: amount has well, yeah it was.
- 25:08Speaker 2: It was twenty two centimeters and he was in there
- 25:10Speaker 2: for nine hours, which was an awful, awful, awful, awful weight.
- 25:19Speaker 2: But yeah, he had the surgery and brilliant. You can
- 25:24Speaker 2: prove it was. I mean it was. It was amazing.
- 25:27Speaker 2: It was amazing. But then I kind of relied so
- 25:30Speaker 2: heavily on the support groups on Facebook. I kind of
- 25:35Speaker 2: then had to mute everything because I then had the
- 25:38Speaker 2: fear of people are still having doing was shouts. Right,
- 25:43Speaker 2: they've had the surgery, but washouts are still being done,
- 25:46Speaker 2: or they're using equipment where they have to stretch or
- 25:50Speaker 2: and it kind of just scared me too much, so
- 25:53Speaker 2: I had to kind of as much as I relied
- 25:56Speaker 2: on all that information, I now couldn't see it. I
- 25:59Speaker 2: kind of like locked, Okay, this is going to be
- 26:03Speaker 2: clearly our journey. But his bomb was just so sore
- 26:07Speaker 2: and we had to When they released us, we were
- 26:11Speaker 2: then straight back to hospital because there were staples in
- 26:14Speaker 2: his nappy, which apparently can happen just from the surgery.
- 26:20Speaker 2: Just he was passing the staples. But that going with
- 26:24Speaker 2: us the flight of our life, and then then everything
- 26:30Speaker 2: seemed apart from getting the bar under control, we were hospital.
- 26:37Speaker 2: I think he's had about six admissions since his surgery,
- 26:41Speaker 2: but we're a year where we haven't been in now.
- 26:44Speaker 2: I don't know if it's at because he's getting older.
- 26:47Speaker 2: His diet is shocking. I think he's kind of borderline vegetarian.
- 26:52Speaker 2: It's like he knows meat, what foods agree with him,
- 26:56Speaker 2: and what meats doesn't agree. Like he won't actually eat
- 26:58Speaker 2: sweets because they say they had give him upset stomach.
- 27:02Speaker 2: So is very so we're going with it. But luckily
- 27:05Speaker 2: it's a lot of fruit, veg and cereal. He has
- 27:08Speaker 2: like six bowls a day. But he is going to
- 27:13Speaker 2: the toilet. We have enemis We use enemous again, awful.
- 27:18Speaker 2: Shouldn't not something that I never thought we'd be doing,
- 27:22Speaker 2: but we do just to avoid I think that has
- 27:25Speaker 2: actually kept us out of the hospital. Yeah, so we
- 27:30Speaker 2: do have the enemas. Potty training is fun. But he's
- 27:35Speaker 2: potty trained, he's clean, so he's doing really, really well.
- 27:40Speaker 2: It wasn't easy. It was not easy at all, but
- 27:43Speaker 2: he can't. I'm a bit worried. He starts scored in September,
- 27:48Speaker 2: but he can't clean himself. And the only reason we're
- 27:51Speaker 2: on top his bomb doesn't get sore is because we're
- 27:54Speaker 2: using tastes from the hospital that we go and collect
- 27:59Speaker 2: and we use the wipes for his sort of using
- 28:05Speaker 2: toilet paper. We use the wet the wet ones that
- 28:07Speaker 2: you can flush and it's just keeping for But he's
- 28:11Speaker 2: miss We've identified that it could be some if he
- 28:15Speaker 2: drinks juice, that could have some impact. But there's still
- 28:19Speaker 2: quite a lot of smearing. There's good days, bad days.
- 28:23Speaker 2: But it's now just him trying to clean himself because
- 28:27Speaker 2: I don't know how that's going to look at school
- 28:29Speaker 2: look like at school for him and I worry. There's
- 28:32Speaker 2: a lot kids. Kids can be mean, and I think
- 28:37Speaker 2: they call each other poy pants and things like that.
- 28:41Speaker 2: But I hope he takes on a chin. But if
- 28:44Speaker 2: someone calls kindly that I hold his dout and we
- 28:47Speaker 2: will ask. You know, it's not nice. But it was
- 28:50Speaker 2: with Cojing a bit like let's let's not.
- 28:55Speaker 1: Yeah, yeah that makes that makes sense, Yeah.
- 28:59Speaker 2: It's yeah, it's done amazing. I just if anyone is listening.
- 29:06Speaker 2: It isn't always easy, and I know everyone every every journey,
- 29:11Speaker 2: hushbrung journey is completely different, and but I just I
- 29:18Speaker 2: was the one wanting all the reassurance and asking so
- 29:22Speaker 2: many questions. And since Cody's surgery, I feel really bad
- 29:27Speaker 2: because I go on with the groups and I can
- 29:29Speaker 2: see people are asking questions similar questions that I asked.
- 29:33Speaker 2: I can't reply. I don't know what it is, but
- 29:35Speaker 2: I just can't. I can't do it. But if anyone's
- 29:39Speaker 2: listening and wants maybe you know a positive as positive
- 29:45Speaker 2: as it can be an art situation story. And he's
- 29:49Speaker 2: he's great, he's crazy, he's a really literally you would
- 29:54Speaker 2: go to you'd put ten four year olds in a
- 29:59Speaker 2: room together that you would not know Cody has Hirshbrungs at.
- 30:02Speaker 1: These Yeah, that's the the interesting thing about Hirshbrungs that
- 30:07Speaker 1: by and large, you know obviously that this son that
- 30:09Speaker 1: you maybe have chu fed or whatever it may be.
- 30:12Speaker 1: But by and large, if you were to, you know,
- 30:15Speaker 1: walk down the street and say pick the person with hirshbrungs,
- 30:19Speaker 1: you couldn't. You just couldn't. And that's that's a good thing,
- 30:24Speaker 1: I think in my opinion.
- 30:26Speaker 2: It just it just makes it. It sometimes makes it
- 30:29Speaker 2: harder when he is having a bad phase or a
- 30:31Speaker 2: bad day. You just like it's a hard reminder you
- 30:37Speaker 2: know of actually he does have a disease, and it is. Yeah,
- 30:44Speaker 2: it's been horrendous.
- 30:47Speaker 1: You can you can sort of have that those times
- 30:52Speaker 1: where you just forget that you have Hirshbrungs. I've been
- 30:55Speaker 1: through that yourself, where most of the time you go
- 30:58Speaker 1: through your day and you don't sort of register that
- 31:02Speaker 1: you've got it, or you don't think anything about it,
- 31:05Speaker 1: and you just get on with whatever you get on with,
- 31:08Speaker 1: and then there are some some slight reminders. You might
- 31:11Speaker 1: have an off day, you might feel not so well,
- 31:12Speaker 1: and you go, I've got Hirshbrums and that's kind of
- 31:16Speaker 1: might be that's why I feel like this, But i'd
- 31:22Speaker 1: just I'd just go back a little bit and ask
- 31:25Speaker 1: you a couple of couple of things with when it
- 31:28Speaker 1: came to the the sort of sticking up, it sounds
- 31:36Speaker 1: again like a few stories I've heard where didn't pass
- 31:40Speaker 1: Maconia and the sick. Was it sort of like a
- 31:44Speaker 1: greedy color?
- 31:46Speaker 2: Yeah, so the beginning that was orange, oh, really orangely
- 31:53Speaker 2: a little bit brown the orange, and then it went
- 31:56Speaker 2: grey and I didn't know.
- 31:57Speaker 5: What what it was.
- 31:59Speaker 2: They that told me that that's his pieces.
- 32:02Speaker 1: Yeah, it's kind of like so it'd be sort of
- 32:05Speaker 1: like a brown color and then sort of like a green,
- 32:08Speaker 1: kind of bile type. Orange is one I've not heard though.
- 32:12Speaker 2: Yeah, it was a bit of orange brown.
- 32:16Speaker 1: That's interesting, I've not I've not heard of this. Well,
- 32:21Speaker 1: this is why I do these and this is why
- 32:23Speaker 1: you just said it a moment ago, that everybody's story
- 32:27Speaker 1: is different, and this is what every single we were
- 32:30Speaker 1: talking a little bit about this off air that every
- 32:33Speaker 1: single episode I do, I learned something and I've learned
- 32:36Speaker 1: something again today, especially with the I know we talked
- 32:40Speaker 1: about passing Staples as well. I didn't know that was
- 32:44Speaker 1: even possible. What did that was a shock at a half.
- 32:50Speaker 1: But what did the the hospital? Was that sort of
- 32:53Speaker 1: something they saw before or was.
- 32:54Speaker 2: It just that I had this slape in my hand,
- 32:59Speaker 2: I had the nappy and I was.
- 33:01Speaker 6: Like, this is like yeah, normal, mum, wow, I just
- 33:09Speaker 6: I don't I've never I've never heard of that before
- 33:13Speaker 6: at all, never never ever heard.
- 33:16Speaker 1: I don't know if anyone listening has gone, yeah, that's
- 33:18Speaker 1: totally normal. But I, yeah, we're eighty eight episodes in
- 33:21Speaker 1: and I haven't heard that's Moore, but that is Yeah,
- 33:26Speaker 1: that's that's incredible. And I imagine that must have heard
- 33:30Speaker 1: as well.
- 33:31Speaker 2: Well. He was I don't know if we got released
- 33:35Speaker 2: from the hospital too early because it was only within
- 33:39Speaker 2: forty hours and him having that surgery. Did they say
- 33:42Speaker 2: you can go home because he was drinking and going
- 33:45Speaker 2: to the load, but that it was our first night
- 33:48Speaker 2: home and it was just we were on edge. We
- 33:51Speaker 2: were really worried and we didn't know what to expect
- 33:54Speaker 2: and we didn't know, well, he just comparing him to
- 34:01Speaker 2: pause that all the time. What did Zach do?
- 34:03Speaker 5: What was it?
- 34:04Speaker 2: What was that we forgot? What it was like to
- 34:06Speaker 2: have a baby and or not a normal baby because
- 34:12Speaker 2: he is good, but you know what I mean, we
- 34:14Speaker 2: just got what's baby and what's what's hirshprung related?
- 34:18Speaker 1: Right?
- 34:18Speaker 2: So youd With Zach we had the witch an hour
- 34:22Speaker 2: between five and six where every night he would just
- 34:24Speaker 2: scream the house down when he was a baby, just
- 34:26Speaker 2: just cry and cry and crying, really grumpy, really unhappy.
- 34:30Speaker 2: If Cody did that, we wouldn't think that's just him
- 34:34Speaker 2: being an unhappy baby. Well, he's in pain. There's something wrong.
- 34:39Speaker 2: And because you could always see him well using a
- 34:42Speaker 2: next to me, and you could just know when he
- 34:46Speaker 2: needed to go to the loop because the noises throughout
- 34:51Speaker 2: the night and you could see him tense his body
- 34:53Speaker 2: and it was just it was just so different. And
- 34:58Speaker 2: I'm not having, we're not having. They need more children,
- 35:01Speaker 2: and they said that we were really lucky. That normally
- 35:04Speaker 2: happens with the boys, but there is surprise that Zach didn't.
- 35:10Speaker 2: It doesn't have Hirshbrung disease because it should be the
- 35:13Speaker 2: first boy or something that we're right is here Okay.
- 35:16Speaker 2: I'm like, yeah, he's fine, but they have said that
- 35:19Speaker 2: if I if we do have wanted more children, it'd
- 35:23Speaker 2: been like I think they said something like a ninety
- 35:27Speaker 2: nine percent chance that that baby would have hirshbrong disease.
- 35:33Speaker 1: Really, that's that's interesting because I one thing that fascinates
- 35:38Speaker 1: me is genetics, and you know why people get hirshbrungs,
- 35:42Speaker 1: why they don't, why they're you know, all of this stuff.
- 35:46Speaker 1: And I think over the last eighteen months, I've interviewed many,
- 35:50Speaker 1: many different scenarios where it's the second born, it's the
- 35:54Speaker 1: third born, it's the Yeah, sometimes there's people who have
- 35:59Speaker 1: a boy, for obviously boys are more susceptible to hirshbrungs.
- 36:02Speaker 1: Then they have a girl and the girl has hirshbrugs.
- 36:04Speaker 1: So I'm the lord had a loss. Really, so when
- 36:08Speaker 1: they're saying ninety was it ninety eight?
- 36:10Speaker 2: You I might have it robbed, but I know it
- 36:13Speaker 2: was a really high percentage that the gene is now
- 36:18Speaker 2: in me and that will be passed on. But then
- 36:21Speaker 2: I see so many amazing stories online where they've gone
- 36:25Speaker 2: on to have three, four, five children and maybe two
- 36:27Speaker 2: of the five only have hirshbrun the zoo it's not
- 36:32Speaker 2: it's all so different, but it's not a risk that
- 36:35Speaker 2: we're willing.
- 36:36Speaker 1: That's fair enough. Yeah, he could not go.
- 36:39Speaker 2: I think that my family and I just yeah, no,
- 36:43Speaker 2: it's completely I think. Okay, we're we're very lucky, We're fortunate.
- 36:49Speaker 2: That's just how that is. Yeah.
- 36:52Speaker 1: I mean, bearing in mind what you've you've said at
- 36:54Speaker 1: the last sort of a half hour or so, and
- 36:56Speaker 1: everything you've been through and and and it's not just
- 37:01Speaker 1: the physical stuff, is it. It's not just you know,
- 37:06Speaker 1: getting Cody well again and finding out what might be wrong,
- 37:09Speaker 1: and it's all of everything that goes with it, the
- 37:12Speaker 1: emotional stress, the mental stress, everything you know, as you said,
- 37:17Speaker 1: coming home, going back again, coming home, doing shifts, you know,
- 37:21Speaker 1: all of that is imagine, incredibly tiring and stressful.
- 37:28Speaker 5: We live of.
- 37:31Speaker 2: A system at home. Amber. We have green. Everything's fine,
- 37:36Speaker 2: We're not worried about Cody. Cody's eating, drinking, going to
- 37:39Speaker 2: the loo. Everything's okay. Amber slight constipation or really gassy,
- 37:45Speaker 2: there's the smell, or we're just something's the miss and
- 37:49Speaker 2: read we're going to hospital.
- 37:52Speaker 1: Right.
- 37:53Speaker 2: So I would say I would say about four times
- 37:57Speaker 2: a month we have we we both met my husband
- 38:01Speaker 2: both say I think we're on Amber Okay, I think
- 38:06Speaker 2: they're going to red you know, you just have that's
- 38:09Speaker 2: an amber is when the enema is basically going to
- 38:12Speaker 2: save the day or not. Yeah, and then Cody, you
- 38:16Speaker 2: say good bum day, and he's like, yeah, good bum day,
- 38:19Speaker 2: or I know he's struggling or something's not right, or
- 38:22Speaker 2: even he'll just come back to me and say, I
- 38:24Speaker 2: think it's going to be a bad bum day. And
- 38:26Speaker 2: that's what we just have constant smearings. So he's throughly
- 38:30Speaker 2: learning as well. So we have good days, bad good
- 38:33Speaker 2: bum days, bad bum days, and we have we're liter
- 38:36Speaker 2: on a red light traffic traffic lights system.
- 38:39Speaker 1: I like that system.
- 38:40Speaker 2: I like that.
- 38:41Speaker 1: But it's interesting as well that Cody knows his own
- 38:44Speaker 1: body a lot more and says, all right, I think
- 38:46Speaker 1: this is like this, So I think this is like that.
- 38:48Speaker 1: That's that's really good to see as well.
- 38:50Speaker 5: Yeah, but yeah it's and I just my I've got
- 38:57Speaker 5: a little nephew and he's one, and I was really
- 39:01Speaker 5: really worried because we again looking at jeans and it
- 39:06Speaker 5: was obviously over the moon when we found out that
- 39:09Speaker 5: who's going to be at the boy, I was I
- 39:12Speaker 5: hope he's hope everything is going to be okay, And
- 39:15Speaker 5: I was like, if it's unluckily, everything is beautiful, healthy
- 39:18Speaker 5: little boy.
- 39:19Speaker 2: But I thought, if they do need help with the
- 39:22Speaker 2: irrigations or wash outs, like I would do that. Now
- 39:25Speaker 2: I now know what to do. And I couldn't believe
- 39:27Speaker 2: it the first time I saw it, and I kind
- 39:29Speaker 2: of want if there was anyone in my neighborhood, someone
- 39:33Speaker 2: could be going through something, and I just I kind
- 39:37Speaker 2: of wanted someone else to tell to be there or
- 39:40Speaker 2: showing me. So I kind of just, yeah, I thought
- 39:45Speaker 2: that there should be a lists somewhere of people host
- 39:47Speaker 2: to you that can help them.
- 39:48Speaker 1: Do these things would be great, great, like a like
- 39:52Speaker 1: a wash out list.
- 39:53Speaker 2: Yeah, just make someone who can, yeah, lend a hand.
- 39:58Speaker 2: It was so awful though, but yeah, it's just it's hard.
- 40:01Speaker 2: We have to go to the Our children's hospital is
- 40:05Speaker 2: an hour and a half away from us.
- 40:06Speaker 1: Yeah, that's not the easiest thing. But that's such a
- 40:12Speaker 1: kind thing as well, though, that you can go right,
- 40:14Speaker 1: I went through this. I had no idea, you know,
- 40:18Speaker 1: four years ago, I had no idea these things even existed.
- 40:21Speaker 1: And it's amazing what you learn because you have to. Yeah,
- 40:25Speaker 1: you don't have a choice, you know, and that's such
- 40:28Speaker 1: a great thing.
- 40:30Speaker 2: Well people say they're pregnant. I just say, yeah, obviously
- 40:33Speaker 2: made up. I'm like, do not leave the hospital until
- 40:35Speaker 2: they passed that maconium, even if they want you to.
- 40:37Speaker 2: Because if if it was the other way around, and
- 40:41Speaker 2: Cody had been my first baby and they let us
- 40:44Speaker 2: go home and he hadn't passed the maconium, we we wouldn't.
- 40:50Speaker 2: He wouldn't be here.
- 40:52Speaker 1: No, no, And as I as I say, probably more
- 40:56Speaker 1: often now than I ever have done, mother's intuition is invaluable,
- 41:03Speaker 1: you know, it's huge. And then I know you said
- 41:05Speaker 1: you went to and from the counter eleven times.
- 41:11Speaker 2: I think is meant to give me those notes. But
- 41:13Speaker 2: they did. And it's like my mum spoke to us again,
- 41:17Speaker 2: a very anxious because there's there's being sick after milk,
- 41:23Speaker 2: and then there's this colored sick and it's just there's
- 41:26Speaker 2: just too many signs not adding up.
- 41:29Speaker 1: Yeah, yeah, exactly. And just as we sort of come
- 41:34Speaker 1: towards the end here the future for Cody, I know
- 41:39Speaker 1: you said a little bit about this starting school soon,
- 41:42Speaker 1: and there's obviously excitement and nervousness and worry a little
- 41:45Speaker 1: bit about that, but kind of medically and non medically,
- 41:50Speaker 1: what do you see for him in the future.
- 41:54Speaker 2: Cody go We have yearly checks check ups at the
- 41:57Speaker 2: hospital with the surgical team. We go on what they say,
- 42:01Speaker 2: they're the experts. He has had botox. Sorry I didn't
- 42:04Speaker 2: mention that, so we'll see if he might need that
- 42:07Speaker 2: again in the future. We haven't left the country. We've
- 42:11Speaker 2: actually been too scared to leave the country. But I'm
- 42:15Speaker 2: hoping another year if everything's okay and when he starts
- 42:20Speaker 2: understanding his body more, we'll all have the confidence to
- 42:24Speaker 2: go abroad. I have a family holiday. I don't with
- 42:31Speaker 2: this disease. I always know that we don't actually know
- 42:36Speaker 2: what the future is going to hold and how quickly
- 42:41Speaker 2: things can happen and change. So it's literally day by
- 42:47Speaker 2: day just hoping we can master his hygiene at the
- 42:53Speaker 2: moment with wiping his own bottom for school more importantly,
- 42:58Speaker 2: But just I think if we're going on aiming at
- 43:01Speaker 2: what we want, just for him to keep living like happy,
- 43:07Speaker 2: happy little boy, living his life to the full with
- 43:10Speaker 2: the odd bad day. But yeah, I think our main
- 43:13Speaker 2: goal would be getting away on a nice family holiday.
- 43:16Speaker 2: It's just finding now that that thing that that hotel
- 43:21Speaker 2: that will have a special specialist hospital there, because if
- 43:24Speaker 2: it's in the middle of nowhere, we're not going that.
- 43:27Speaker 1: It's not going camping anytime soon.
- 43:30Speaker 2: Oh no, I hate that. Well.
- 43:35Speaker 1: Fantastic. Well, thank you so so much for coming on.
- 43:39Speaker 1: It's been a been a pleasure to chat to you.
- 43:41Speaker 1: And just very quickly before we do, where can people
- 43:44Speaker 1: find you on social media and to keep up to
- 43:47Speaker 1: date with with everything.
- 43:48Speaker 2: I will open my account because it's locked at the minute,
- 43:52Speaker 2: but I will definitely unlock and my Instagram and there's
- 43:57Speaker 2: lots of pictures. I'm obsessed with my children. But my
- 44:02Speaker 2: Instagram handle is said Sade gold g O L D
- 44:08Speaker 2: T h O r p E and his journey is
- 44:12Speaker 2: on there. Really I post the highs and the lows.
- 44:17Speaker 2: But yeah, just to document everything really and just if
- 44:20Speaker 2: it might help someone if they're in a similar position.
- 44:23Speaker 1: Yeah, exactly. Fantastic. Well, thank you. We wish you obviously
- 44:27Speaker 1: all the very very best for the future, and thanks
- 44:30Speaker 1: for coming on.
- 44:31Speaker 2: Amazing.
- 44:32Speaker 1: Thank you, Thank you for listening and being part of
- 44:37Speaker 1: this growing community. If you have enjoyed the episode, don't
- 44:40Speaker 1: forget to subscribe, leave a review, and share it. With
- 44:44Speaker 1: someone who might need it. You can connect with us
- 44:46Speaker 1: on social media via Instagram, Facebook, and TikTok under the
- 44:50Speaker 1: name Tom's Hirshprung's Podcast.
- 44:53Speaker 6: See you next week.