Latest / Tom's Hirschsprung's Podcast / Episode 129 - With Jodie Mulrainey

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Episode 129 - With Jodie Mulrainey · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
• 0:15
  Speaker 1: Each episode, we will explore real stories and honest conversations
• 0:19
  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in.
• 0:46
  Speaker 2: Hello, and welcome to episode one hundred and twenty nine
• 0:50
  Speaker 2: of Tom's Hirshbrungs Podcast. I am delighted this morning to
• 0:54
  Speaker 2: be joined by Jody. Jody, welcome to the podcast.
• 0:57
  Speaker 3: Thanks for having me, Thank you, Oh.
• 0:59
  Speaker 2: Thank you so much for coming on. Now we're here
• 1:02
  Speaker 2: to chat about your son who has hirsh brands. I
• 1:08
  Speaker 2: guess would you like to take us well, start from
• 1:11
  Speaker 2: wherever you like.
• 1:13
  Speaker 3: Yeah, I can start from the beginning. When Ollie was born.
• 1:18
  Speaker 3: He was it was nine days late, but that wasn't
• 1:21
  Speaker 3: anything like wasn't hausing any of the problems when he
• 1:26
  Speaker 3: got let out of hospital that night. But he hadn't
• 1:30
  Speaker 3: Pud hadn't passed the new hiss plug or wasn't really
• 1:33
  Speaker 3: drinking any of his milk. But the NURST season midwives
• 1:37
  Speaker 3: didn't think there was any problem with that. So he
• 1:39
  Speaker 3: got home that day and the midwives came out on
• 1:43
  Speaker 3: the second day at home and did a visit and
• 1:47
  Speaker 3: explained to her that he wasn't drinking his milk. He
• 1:49
  Speaker 3: still hadn't put on day two. We thought maybe it
• 1:54
  Speaker 3: was the milk and the bottles that might have been
• 1:56
  Speaker 3: the problem, so we changed milk several times, changed bottles
• 2:02
  Speaker 3: maybe three or four different times, thinking that that would
• 2:05
  Speaker 3: help in it and never So then she left and
• 2:09
  Speaker 3: says we'd keep an eye on it again, and instead
• 2:12
  Speaker 3: of leaving it until the week to come back to visit,
• 2:14
  Speaker 3: she came out on day five. By day five he
• 2:19
  Speaker 3: was sleeping literally like twelve hours. You had to wake
• 2:23
  Speaker 3: them and try and get them to feed. Still wouldn't feed.
• 2:27
  Speaker 3: He was being sick, but it was like electric green
• 2:32
  Speaker 3: and it was just it was everywhere. But I was like,
• 2:35
  Speaker 3: I don't understand how you can be being sick when
• 2:37
  Speaker 3: there's nothing going in So once we spoke to the midwife,
• 2:42
  Speaker 3: she said you need to go back to the hospital
• 2:45
  Speaker 3: just to get them checked. It might not be anything serious,
• 2:49
  Speaker 3: which obviously escalated. So we went to the Glasgow Oyl
• 2:55
  Speaker 3: infirmary to the maternity wards where they took him into
• 2:58
  Speaker 3: her room sorts of blood tests and not When babies
• 3:03
  Speaker 3: are born, they can lose maybe five or ten percent
• 3:06
  Speaker 3: of their average birth weight. When their born giver take that,
• 3:09
  Speaker 3: they're allowed to do that. Ollie had lost maybe about
• 3:13
  Speaker 3: thirty percent of that, so he had gone down a
• 3:17
  Speaker 3: space had all drawn in but obviously he wasn't drinking
• 3:22
  Speaker 3: any mill, he wasn't getting anything any system and everything
• 3:25
  Speaker 3: was coming out through sick. So we then got transferred
• 3:30
  Speaker 3: to it would have been the Glasgow, York Hill that's
• 3:33
  Speaker 3: not there now, and he got put right in to
• 3:37
  Speaker 3: nick Yure and blood tests, contrast tests, everything, all the
• 3:43
  Speaker 3: symptoms and some of the tests that were coming back
• 3:46
  Speaker 3: Hush Sprungs disease insisted. Vibross are kind of are quite
• 3:49
  Speaker 3: close together, so it was either going to be one
• 3:53
  Speaker 3: or the other. So they then did the contrast test
• 3:57
  Speaker 3: that came back as negative for system fibrosis, and on
• 4:02
  Speaker 3: day eight of all his life, he was diagnosed with
• 4:06
  Speaker 3: Harshbung's disease.
• 4:08
  Speaker 2: On day eight, Wow, I mean that's that's quite quite
• 4:13
  Speaker 2: a light diagnosis, really amazing.
• 4:16
  Speaker 3: Really really really intense.
• 4:18
  Speaker 2: Yeah, I imagine. So, I mean that's because usually it's
• 4:23
  Speaker 2: I mean by light diagnosis. I was about three weeks,
• 4:26
  Speaker 2: but the usual sort of around maybe forty eight hours roughly.
• 4:32
  Speaker 3: Yeah, And I think I think he maybe would have
• 4:35
  Speaker 3: got it sooner if maybe the midwives had took me
• 4:39
  Speaker 3: more serious when he was in the hospital when he'd
• 4:41
  Speaker 3: been born, that he hadn't took any milk. It maybe
• 4:44
  Speaker 3: they took I don't know, two miles of milk or
• 4:47
  Speaker 3: something in the whole time. He was born at seven
• 4:49
  Speaker 3: o'clock in the morning and we got like about half
• 4:52
  Speaker 3: ten that night, and he'd maybe only taken about two
• 4:54
  Speaker 3: miles of milk, And to them they said that that
• 4:58
  Speaker 3: was fine. Of it's not. And it hadn't passed the
• 5:03
  Speaker 3: meconium plug or anything either, and they were quite happy
• 5:06
  Speaker 3: to send them home. So I think if they maybe
• 5:08
  Speaker 3: took that a little bit more serious, then maybe weould
• 5:12
  Speaker 3: have got diagnosed within that forty hour time frame.
• 5:16
  Speaker 2: Yeah, definitely. I mean it's one of the one of
• 5:20
  Speaker 2: the classic signs, isn't it of Hirshbrung's the bile. Yeah,
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  Speaker 2: lack of passing of maconium. But again, it's.
• 5:29
  Speaker 3: So swollen, like he looked like he had like a
• 5:33
  Speaker 3: pregnancy bump. Both they say, the way is adamant. And
• 5:37
  Speaker 3: because they'd lost so much weight, you could see these
• 5:40
  Speaker 3: ribs around where's abdomen was. Obviously this ended.
• 5:46
  Speaker 2: So all all the classic signs really.
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  Speaker 3: Literally every symptom probably in the book.
• 5:52
  Speaker 2: Yeah, yeah, well it definitely sounds like it. I mean,
• 5:55
  Speaker 2: it sounds like all all of the classic symptoms. But
• 5:57
  Speaker 2: it's one of those things again, is it the awareness
• 6:02
  Speaker 2: and sometimes and it shouldn't be this way, but sometimes
• 6:06
  Speaker 2: it depends on what hospital you're at. You know, there
• 6:09
  Speaker 2: will be some hospitals that will spot Hirshprung's disease straight
• 6:14
  Speaker 2: away and say, well, I know exactly what that is,
• 6:17
  Speaker 2: and then they'll test for it and all of that stuff.
• 6:20
  Speaker 2: And there will be some that will sort of, maybe
• 6:24
  Speaker 2: in this case, sort of go well, we'll see how
• 6:26
  Speaker 2: it goes. But hirsh Bringez doesn't really, it doesn't get
• 6:30
  Speaker 2: better on its own. You need to do something.
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  Speaker 3: And I think as we and what as his parents
• 6:38
  Speaker 3: had never ever heard of hush Fung's disease. We'd never
• 6:42
  Speaker 3: heard of it. We had heard at Baboresis. So we'll
• 6:44
  Speaker 3: work kind of a like right, Okay, if it's that,
• 6:47
  Speaker 3: we kind of anno what to do and what can
• 6:51
  Speaker 3: happen and that with hush funs. As soon as they
• 6:53
  Speaker 3: said that, we were like not got actly what that
• 6:57
  Speaker 3: in tears? What's going to happen? What is going to
• 7:00
  Speaker 3: be like? And what a journey it's sundate to be?
• 7:05
  Speaker 3: Matt's for sure.
• 7:06
  Speaker 2: No, we will definitely definitely get into that. But it's
• 7:11
  Speaker 2: interesting you mentioned there was two things. One the cystic fibrosis.
• 7:15
  Speaker 2: I've I've heard that one before where people have said, well,
• 7:17
  Speaker 2: it's either one or the other, yea or cat. Well,
• 7:22
  Speaker 2: sometimes it can be neither, but usually you're not going
• 7:24
  Speaker 2: to get both together. So I have heard that quite
• 7:27
  Speaker 2: a few times from people who've been diagnosed with Hirschmungs
• 7:30
  Speaker 2: that they said, well it could be cystic fibrosis. Yeah,
• 7:35
  Speaker 2: also or as well as but also the another interesting
• 7:40
  Speaker 2: point that you made, which I haven't heard before, but
• 7:44
  Speaker 2: is the constant changing of milk and thinking, right, well,
• 7:48
  Speaker 2: it could be because most most times people are just
• 7:51
  Speaker 2: kind of going right, whether not taking milk, Oh, maybe
• 7:54
  Speaker 2: we'll try again later or whatever it might be. But
• 7:59
  Speaker 2: actually changing milk was what was the kind of what
• 8:04
  Speaker 2: was the thought behind all of that.
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  Speaker 3: I think he was Olie was my second and I
• 8:10
  Speaker 3: just think, obviously, I know there's different milks, there's different
• 8:13
  Speaker 3: formulas and stuff, and I was thinking, maybe the one
• 8:17
  Speaker 3: that he's drinking just isn't agree with him, or he
• 8:19
  Speaker 3: doesn't like the taste. So I was like, we'll change
• 8:23
  Speaker 3: it up a bit. So then we bought another formula
• 8:26
  Speaker 3: and it's still was the exact same. It wasn't taking it,
• 8:30
  Speaker 3: and I was like, right, there's only so much milk
• 8:32
  Speaker 3: that you can buy and trial and error, and if
• 8:35
  Speaker 3: he doesn't take it, I'm like, I don't know what
• 8:37
  Speaker 3: else this child is supposed to have. So then we
• 8:41
  Speaker 3: changed bottles so that the teats were different, the flow
• 8:45
  Speaker 3: was different, thinking maybe that's something. So everything I was
• 8:49
  Speaker 3: trying at home, I was thinking that that was genuinely
• 8:53
  Speaker 3: just it and there wasn't anything significantly wrong with them.
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  Speaker 2: Yeah, I mean, obviously was yeh know what the issue was,
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  Speaker 2: But at the time that sounds perfectly logical, and I
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  Speaker 2: just haven't heard that before, but actually it sounds, you know,
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  Speaker 2: maybe the taste is different, maybe the way it gets
• 9:10
  Speaker 2: into the body is slightly different.
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  Speaker 3: Saying that, I thought I wasn't thinking, oh my goodness,
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  Speaker 3: you've got something wrong with them, like, are there something
• 9:19
  Speaker 3: happened on it, and say there was just like maybe
• 9:22
  Speaker 3: as the milk, so let's try it, Tod. It wasn't.
• 9:26
  Speaker 3: It was dinner with the milk. The milk was pain.
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  Speaker 2: Yes, But then if you'd guessed Hirshbrung's disease at that stage,
• 9:34
  Speaker 2: then yeah, I don't think that was the first thing
• 9:37
  Speaker 2: that was rubbing through the definitely not. But yeah, so
• 9:43
  Speaker 2: it's it sounds perfectly perfectly a logical step to me.
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  Speaker 2: But then so you said all these diagnosed with Hirshbrung's
• 9:52
  Speaker 2: day eight. Yeah, from that point on because sometimes, again
• 9:59
  Speaker 2: depending on where you are, sometimes nurse and doctors will say, well,
• 10:03
  Speaker 2: this is the diagnosis, but don't google it or don't
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  Speaker 2: whatever we discouraged from googling or was it. Just find
• 10:11
  Speaker 2: out as much as you can.
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  Speaker 3: So I kind of admitted that I am a serial
• 10:16
  Speaker 3: googler when it got up his diagnosis, and I was
• 10:20
  Speaker 3: told try and stay away from it because sometimes Google
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  Speaker 3: gives you obviously all the horror stories and everything, and
• 10:28
  Speaker 3: try and stay away from it. So I got given
• 10:32
  Speaker 3: this spicular I've actually still kept up. That's what I
• 10:37
  Speaker 3: was given and it just basically told you what harshprungs was,
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  Speaker 3: told you the symptoms, what can happen, how it's diagnosed,
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  Speaker 3: and like all the surgeries and everything else that comes
• 10:51
  Speaker 3: along with it. And they gave me that with so
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  Speaker 3: much detail for the purpose so that I don't google it. Wow,
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  Speaker 3: they're thinking, was everything that's in this booklet would take
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  Speaker 3: me away from Google?
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  Speaker 2: Yeah, that's so. That's so helpful. Again, something I haven't
• 11:12
  Speaker 2: said or very rarely see. Yah, hospitals kind of having
• 11:18
  Speaker 2: some sort of resource leaflet. Yeah, Piper or whatever, that's
• 11:24
  Speaker 2: that's it.
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  Speaker 3: Yeah, there's quite a few pages in it, and it's
• 11:27
  Speaker 3: basically tells you obviously what hashbrungs is, all the surgeries
• 11:32
  Speaker 3: that you can have, the treatments if there's how long
• 11:35
  Speaker 3: term it will be, the initial treatments and things, which
• 11:39
  Speaker 3: did help because Hashprungs disease obviously is ridiculously there, so
• 11:45
  Speaker 3: not everybody's heard of it and even knows what it is,
• 11:49
  Speaker 3: so we were completely in the dark with the whole diagnosis.
• 11:53
  Speaker 3: I'd never heard of it before, didn't know anybody else
• 11:56
  Speaker 3: that had it. That it definitely did help it was
• 12:00
  Speaker 3: an eye opener and scary at the same time, but
• 12:03
  Speaker 3: it definitely was an eye opener.
• 12:05
  Speaker 2: Yeah, definitely, I mean, so good that they gave you
• 12:08
  Speaker 2: some some more info. But you're absolutely right that it is.
• 12:12
  Speaker 2: It is incredibly rare. Yeah, but obviously there's always well
• 12:16
  Speaker 2: there's several different types as well as at least six,
• 12:19
  Speaker 2: and then there's sort of total colonic plus, which could
• 12:22
  Speaker 2: be a manner of different things. But yeah, so he's
• 12:26
  Speaker 2: incredibly rare, and there's no reason why you would have
• 12:29
  Speaker 2: heard of it. I mean, there's so many people, myself included,
• 12:34
  Speaker 2: who have no history of hirshprungs at all, even though
• 12:37
  Speaker 2: we're told obviously it comes through genes and all of
• 12:40
  Speaker 2: that stuff. But that's also not to say that it
• 12:43
  Speaker 2: will be passed through the family, because I've known plenty
• 12:46
  Speaker 2: of people, have interviewed plenty of people who have hirshprungs
• 12:49
  Speaker 2: go on to have children who don't have hushprungs. So
• 12:52
  Speaker 2: it shan just be you know, one of those things. Yeah, yeah,
• 12:59
  Speaker 2: there's still you know that there's no rhyme or reason.
• 13:04
  Speaker 2: It's not anything that anyone's done in pregnancy or anything.
• 13:07
  Speaker 2: It's just that there's no, that's.
• 13:09
  Speaker 3: One of the I thinks I was a mom. That's
• 13:11
  Speaker 3: one of the first things as soon as you get
• 13:13
  Speaker 3: told at your tales got something wrong method, essentially your
• 13:17
  Speaker 3: first thought as, oh my god, what what have I done?
• 13:21
  Speaker 3: If I messed something? Have I done something wrong? Like
• 13:24
  Speaker 3: could have prevented that? That was one of my first
• 13:26
  Speaker 3: questions as well, And it was like, it's not anything
• 13:30
  Speaker 3: to do with pregnancy, the mom anything. It just it
• 13:33
  Speaker 3: can run and the jeans.
• 13:36
  Speaker 2: Yeah, I guess that can be possibly reassuring in a way,
• 13:41
  Speaker 2: but it's yeah, that again, that's totally logical. We go,
• 13:45
  Speaker 2: oh did I did I eat something? Did I not
• 13:48
  Speaker 2: do something that I was supposed to do or whatever
• 13:51
  Speaker 2: it might be. The natural thing is sort of to
• 13:53
  Speaker 2: look at yourself and go, what have I done? But yeah,
• 13:56
  Speaker 2: didn't like it is it is honestly just a roll
• 14:03
  Speaker 2: of the dice. I don't. Yeah, it is just it
• 14:07
  Speaker 2: is just OLI is one of those one in five thousand,
• 14:11
  Speaker 2: like myself, you know, in no family history or anything.
• 14:14
  Speaker 3: When was the lucky ones that was chosen? The lucky
• 14:18
  Speaker 3: is a term, yeah, never not the eight one.
• 14:22
  Speaker 2: It's definitely a term, but yeah, it is. It isn't
• 14:28
  Speaker 2: for anyone listening who maybe has just had a child
• 14:32
  Speaker 2: diagnosed with with Hirsprungs. It is one of those things.
• 14:35
  Speaker 2: It's not your fault, you know, it's it is just
• 14:39
  Speaker 2: it's nothing you've done. It's all research will point to
• 14:43
  Speaker 2: the fact that it is just a random game of chance.
• 14:47
  Speaker 3: I guess as it definitely is.
• 14:51
  Speaker 2: So with that being said, Olli being now eight days old,
• 14:56
  Speaker 2: just diagnosed with Hirsprungs, thankfully you've been given quite a
• 15:00
  Speaker 2: bit of info on sort of what to look for,
• 15:05
  Speaker 2: what to do. I'm guessing things like entracolitis was mentioned
• 15:09
  Speaker 2: in the.
• 15:10
  Speaker 3: Entroclitis was mentioned yet we hadn't came across it just yet.
• 15:18
  Speaker 3: But once he had his diagnosis, we were then introduced
• 15:22
  Speaker 3: to rectal washouts where obviously you have your catheter and
• 15:29
  Speaker 3: your sailine and things and you flush them out essentially
• 15:32
  Speaker 3: that way for anything that's blocked and he's boot we
• 15:35
  Speaker 3: can remove it, because obviously essentially he can't. That's the
• 15:39
  Speaker 3: whole problem. So with that we did the rector flush outs.
• 15:45
  Speaker 3: Doctors and surgeons did them first, and then we got
• 15:48
  Speaker 3: shown how to do it so that we could get home.
• 15:51
  Speaker 3: Ollie was he's been diagnosed. It's long segment hushbuns that
• 15:55
  Speaker 3: he has, and the surgeon that he was given at
• 15:59
  Speaker 3: the start was more than happy to do it. He
• 16:03
  Speaker 3: knew what hrshpruings was and knew everything about it until
• 16:08
  Speaker 3: they investigated Olie a little bit further and realized he
• 16:12
  Speaker 3: was a little bit more advanced than an average child
• 16:16
  Speaker 3: with hushprungs. So we had to change surgeons to a
• 16:20
  Speaker 3: surgeon that had just come back from Australia, and essentially
• 16:25
  Speaker 3: he is he was now our surgeon for the whole
• 16:28
  Speaker 3: of Ollie's life up until now. But basically everything at
• 16:32
  Speaker 3: the top half of Olli, everything had to get spun
• 16:35
  Speaker 3: round because he had long segment harshprungs, So everything essentially
• 16:40
  Speaker 3: inside him all got removed and turned upside down. Essentially
• 16:49
  Speaker 3: when he had his first operation and it'll make more
• 16:53
  Speaker 3: stents with more up to date information.
• 16:57
  Speaker 2: Would that be the pull through then?
• 16:59
  Speaker 3: Yeah, So when when he was diagnosed eight days old,
• 17:04
  Speaker 3: we were then told then that essentially he would need
• 17:08
  Speaker 3: bibble pull through surgery. It was set for he would
• 17:13
  Speaker 3: have been two months old when that was put in
• 17:16
  Speaker 3: place to do. And then when all they went into
• 17:20
  Speaker 3: the hospital to get it. Then he went into hospital
• 17:24
  Speaker 3: maybe the week before with suspected eNTRI colitis. Oh no, ready, yes,
• 17:32
  Speaker 3: that was what our first kind of a insight into
• 17:36
  Speaker 3: what intriclitis was. And it's it's not pretty.
• 17:40
  Speaker 2: It really isn't.
• 17:41
  Speaker 3: No, it's not and it's not your average sickness and
• 17:47
  Speaker 3: diaryar bug. Because even now, like all explained to all
• 17:51
  Speaker 3: the things and how he can be found just now
• 17:55
  Speaker 3: and within half an hour, it could change because inter
• 18:00
  Speaker 3: hits so fast and it's probably one of the most
• 18:04
  Speaker 3: dangerous infections that you can have if you don't catch
• 18:09
  Speaker 3: it very quickly.
• 18:12
  Speaker 2: It is most definitely, yeah, it is definitely, but like
• 18:16
  Speaker 2: you say, it is very fast acting and it can
• 18:20
  Speaker 2: be very sudden, and it's again it's that awareness, and
• 18:25
  Speaker 2: it doesn't have a huge amount of symptoms from what
• 18:28
  Speaker 2: I'm aware, but there are certain signs that you can
• 18:33
  Speaker 2: say anything, yeah, actually, something's not quite right here.
• 18:38
  Speaker 3: And it's a little bit annoying as well, because even
• 18:41
  Speaker 3: still now, when you get the blood tests and the
• 18:45
  Speaker 3: steel samples and things like that, it never ever comes
• 18:49
  Speaker 3: back completely positive for entricolitis. They just automatically treat it
• 18:56
  Speaker 3: as entricolitis because it has got the symptoms. It could
• 18:59
  Speaker 3: be another bug, but they'll always go and treat it
• 19:03
  Speaker 3: as entercolitis, just to keep it on the safe side
• 19:07
  Speaker 3: of things.
• 19:08
  Speaker 2: Yeah, I think it's it's always always best to on
• 19:10
  Speaker 2: the on the side of caution at that's point, especially
• 19:15
  Speaker 2: with hirsh brings in, especially with what inprocolitis can do.
• 19:20
  Speaker 2: If he's obviously not not treated, but excellent that you
• 19:25
  Speaker 2: kind of caught it quickly.
• 19:26
  Speaker 3: I guess it's it's a very isolating infection because when
• 19:32
  Speaker 3: Olie gets taken into the hospital with entricolitis, because it
• 19:37
  Speaker 3: is obviously an infection, it gets put into source. He's
• 19:41
  Speaker 3: not allowed to any visitors. He's not allied. He's not
• 19:44
  Speaker 3: allied anything. But he's had maybe and his life is
• 19:53
  Speaker 3: maybe had about five or six episodes where it's been
• 19:58
  Speaker 3: suspected entricolitis that he's been impossible with. He's had about
• 20:03
  Speaker 3: five or six, but quite a lot of them where
• 20:07
  Speaker 3: before he had he's pulled through and after after he's
• 20:13
  Speaker 3: had his reversal.
• 20:15
  Speaker 2: Right, See, yeah, I mean that's still it's still quite
• 20:20
  Speaker 2: a lot.
• 20:20
  Speaker 3: For it is quite a lot. He's now eleven and
• 20:24
  Speaker 3: he's not had it for I don't know, maybe about
• 20:28
  Speaker 3: four years maybe he's not had a symptom of enricolitis
• 20:33
  Speaker 3: or anything. But when he was about four months old
• 20:40
  Speaker 3: he then got the green light to get is pulled
• 20:45
  Speaker 3: through surgery.
• 20:48
  Speaker 2: But I mean, it's good good to know that that
• 20:51
  Speaker 2: hasn't had anything for the last four or four years
• 20:54
  Speaker 2: or so, But there has there been anything within that
• 20:57
  Speaker 2: time that you've done differently to try sort of.
• 21:01
  Speaker 3: So the only the only thing differently he has is
• 21:06
  Speaker 3: there's been different medications, is that he's tried to try
• 21:10
  Speaker 3: and sick and poor. There's been the probiotic jobogurts, He's
• 21:16
  Speaker 3: had botox injections. But when he had his Bible pull through,
• 21:23
  Speaker 3: they told us that it would be pretty straightforward and
• 21:29
  Speaker 3: it would we would only be away for a few
• 21:31
  Speaker 3: hours and the worst case scenario he would come back
• 21:36
  Speaker 3: with a stoma, but they would really really try and
• 21:40
  Speaker 3: not make that be the case. So on the day
• 21:45
  Speaker 3: of oli surgery, he went down to theater. Everything was fign.
• 21:50
  Speaker 3: After the kind of a four hour mark, alarm bell
• 21:53
  Speaker 3: started dringing because I was like, why is he not
• 21:56
  Speaker 3: back yet? Then a six hour mark went past. It
• 22:02
  Speaker 3: was very very slowly starting to freak out and we
• 22:06
  Speaker 3: were in a four bedbay in the hospital, and in
• 22:11
  Speaker 3: our hospital they've got like hospital clowns and things. So
• 22:15
  Speaker 3: there was another baby on this four bed by I'll
• 22:17
  Speaker 3: always remember it. And they came in and they were
• 22:20
  Speaker 3: blowing bubbles and they had their tambourines and they were
• 22:24
  Speaker 3: singing and dancing, and I was sitting next to an
• 22:26
  Speaker 3: empty bed, slowly losing the will to live, and I
• 22:31
  Speaker 3: was like, please just leave, with all due respect, please
• 22:35
  Speaker 3: just go just now. So then about eight and a
• 22:40
  Speaker 3: half hours had gone and he surgeon walked towards me
• 22:46
  Speaker 3: and I was like, oh no. And basically they had
• 22:51
  Speaker 3: said that he was more advanced, there was a lot
• 22:53
  Speaker 3: more to remove, and so he's had to come back
• 22:58
  Speaker 3: with a stag at the same time, so we were trying,
• 23:05
  Speaker 3: we were trying to prepare for the stoma bag, but
• 23:07
  Speaker 3: at the same time they did say if it wasn't needed,
• 23:10
  Speaker 3: if they could get away with not, then that would
• 23:14
  Speaker 3: be fine. So that as much as he's just went
• 23:18
  Speaker 3: for life saving change in surgery, he's now then came
• 23:22
  Speaker 3: back with something else that we didn't think he was
• 23:26
  Speaker 3: going to have. And if you haven't ever saw a
• 23:31
  Speaker 3: stomach before, it's it's quite scary looking. Yeah, it's it's bizarre.
• 23:38
  Speaker 3: It's not the nicest. It freaked me out a little bit,
• 23:43
  Speaker 3: but it seemed to work, and it seemed. He had
• 23:47
  Speaker 3: his stoma bag for maybe about six months and what
• 23:52
  Speaker 3: a distance that madet with. There was no infections, there
• 23:57
  Speaker 3: was no he didn't have any symptom was an eventriclitis,
• 24:02
  Speaker 3: and from that point I was thinking, maybe our stoma
• 24:05
  Speaker 3: bag is actually the right thing for him, because up
• 24:09
  Speaker 3: until the point of him being born, to get in
• 24:11
  Speaker 3: the stoma bag, it was constantly. It was in the
• 24:14
  Speaker 3: hospital every month, maybe twice every month, for a week
• 24:18
  Speaker 3: at a time. With intricolitis. It was a lot on him.
• 24:24
  Speaker 3: But Olli being Ollie, it's a standing joke now that
• 24:29
  Speaker 3: if it wasn't for bad luck, we wouldn't have any
• 24:32
  Speaker 3: He caught a wound infection ground his stoma and on
• 24:41
  Speaker 3: Mother's Day, which was maybe two or three days later,
• 24:45
  Speaker 3: his storma collapsed and that was something else.
• 24:52
  Speaker 2: With the prolapse. I've had this from from several people before,
• 24:58
  Speaker 2: but do they they gave you the sugar trick? Yes,
• 25:03
  Speaker 2: did it work?
• 25:05
  Speaker 3: It did? It took a while to go back in
• 25:08
  Speaker 3: so if nobody has saw us my prolapse before. The
• 25:12
  Speaker 3: only way that I could describe it, it's like an
• 25:15
  Speaker 3: octopus tentacle, like that's the only way that I can
• 25:19
  Speaker 3: describe it to anybody. So that they realized, like what
• 25:22
  Speaker 3: it looks like. So it came out, so we had
• 25:25
  Speaker 3: to cover them and hold it in and the surgeons
• 25:28
  Speaker 3: came and it eventually went back in, which was fine.
• 25:33
  Speaker 3: It was perfect. So then we were told that if
• 25:39
  Speaker 3: it happens again, we might need to go back to
• 25:42
  Speaker 3: theater because they might need to kind of a put
• 25:44
  Speaker 3: it back in and stitch it kind of on the sides.
• 25:49
  Speaker 3: So we had left and went home that night. We
• 25:52
  Speaker 3: had the auction to staying ron A McDonald house, but
• 25:54
  Speaker 3: we stay literally fifteen minutes from the hospital, so we
• 25:58
  Speaker 3: were like, we're close enough to get there, and because
• 26:01
  Speaker 3: he was in intensive care, you're not allowed to stay
• 26:04
  Speaker 3: in the hospital anyway. So we had gone home and
• 26:09
  Speaker 3: the hospital had phoned through the night and it had
• 26:12
  Speaker 3: rollapped again, so I really okay, So we took ourself
• 26:17
  Speaker 3: to the hospital. They managed to put it back in
• 26:19
  Speaker 3: again and it stayed back in, but he was on
• 26:25
  Speaker 3: very close watch for needing to go back to theater again,
• 26:30
  Speaker 3: but it never never came back again. Everything was fine,
• 26:35
  Speaker 3: and then he then had reversal, which went swimmingly. Nothing
• 26:44
  Speaker 3: really happened in the run up to that. He got
• 26:48
  Speaker 3: his reversal, everything was fine. The only problem he had
• 26:53
  Speaker 3: when they reversed it he then had another winding section.
• 26:57
  Speaker 3: But I think because his whole sister, he doesn't have
• 27:02
  Speaker 3: an immune system in there or anything that he gets
• 27:06
  Speaker 3: at taxi his bible. So I think anytime he gets
• 27:10
  Speaker 3: anything done, any surgeries or anything, he gets some form
• 27:13
  Speaker 3: of infection. But I think it's just a really run
• 27:16
  Speaker 3: down area which you've got to take the good with
• 27:21
  Speaker 3: the bads, and like, I'll take a wound infection over
• 27:26
  Speaker 3: ento clias rather than do you know what I mean,
• 27:30
  Speaker 3: I would rather have that. So the only thing that
• 27:32
  Speaker 3: he had was he had a wounding section and then
• 27:38
  Speaker 3: the vomiting in the diary a started a couple of
• 27:41
  Speaker 3: days later, so I was like, right, Okay, wasn't enter clias.
• 27:50
  Speaker 3: He had neuro virus that he's caught while being in
• 27:55
  Speaker 3: the huff. So Allie's maybe had He's maybe had neuro
• 27:59
  Speaker 3: virus h three times and every time it puts him
• 28:04
  Speaker 3: into the hospital because obviously, as you know, everything just
• 28:09
  Speaker 3: goes for your Bible. It goes for your Bible. And
• 28:13
  Speaker 3: because Ollie only has a fifth of his Bible left,
• 28:19
  Speaker 3: and because of that, it doesn't really hold absorption of
• 28:24
  Speaker 3: water or anything, so he dehydrates really quickly. So obviously
• 28:30
  Speaker 3: sickness and diarrhea you do dehydrate anyway, but with a
• 28:34
  Speaker 3: child of harsh springs and only a fifth of his
• 28:36
  Speaker 3: Bible left, it's on another level. So it always puts
• 28:41
  Speaker 3: them into the hospital, put on fluid to bring his
• 28:44
  Speaker 3: hydration and things back up and then start again. So
• 28:49
  Speaker 3: he's been every time he's been in, he's been brought
• 28:52
  Speaker 3: home with and to be atted. So he's either had
• 28:56
  Speaker 3: met andides old or comoxiclav or always the two that
• 29:00
  Speaker 3: he gets given. But again to me, when all this
• 29:06
  Speaker 3: kind of I started in the neuro virus and all
• 29:08
  Speaker 3: that obviously isn't a bill related necessarily infection, but the
• 29:14
  Speaker 3: infections and the entercolitis and things seemed to come back
• 29:19
  Speaker 3: when he had his Stowa reversal. So from then I
• 29:23
  Speaker 3: had in my head and I had tops with these
• 29:25
  Speaker 3: surgeons and I was like, I think a Stowa bag
• 29:29
  Speaker 3: is the way forward. For Aly, it seemed to be
• 29:31
  Speaker 3: when he had that stoma bag, and that whole time
• 29:34
  Speaker 3: before he got his reversal, he was never in the hospital,
• 29:38
  Speaker 3: he never had an infection, he was doing well in
• 29:41
  Speaker 3: his sell everything seemed to have changed. And then when
• 29:46
  Speaker 3: he got the reverse so it was as if we
• 29:49
  Speaker 3: went back the way, as if it gave you that
• 29:53
  Speaker 3: little glumps of hot that that's what life could be like.
• 29:56
  Speaker 3: But then it took away and go, no, it's it's
• 29:59
  Speaker 3: not that's not for you, which obviously wasn't the greatest.
• 30:05
  Speaker 3: And I get sometimes with harsh sprungs and the treatments
• 30:08
  Speaker 3: and things, that trial and error, which is annoying in
• 30:14
  Speaker 3: itself because you obviously want what I thought was best
• 30:18
  Speaker 3: for Ollie was a stoma bag. But it's obviously not
• 30:22
  Speaker 3: always the answer. Surgeries aren't always the answer because after
• 30:26
  Speaker 3: they've had surgery so many times, they kind of I
• 30:28
  Speaker 3: don't want to put them through that again, or put
• 30:32
  Speaker 3: them through the trauma or anything. So I get that,
• 30:36
  Speaker 3: and I get there's always another option, a less invasive
• 30:40
  Speaker 3: option or anything like that. So once he'd had a
• 30:45
  Speaker 3: store reverseal, we then had to do richel washouts with
• 30:51
  Speaker 3: the anal dilations with the rod. It was a ten
• 30:57
  Speaker 3: millimeter metal rod to open up as bump and then
• 31:02
  Speaker 3: do the washer. It's like we did when he was
• 31:04
  Speaker 3: a brand new baby, and we did them, but we
• 31:07
  Speaker 3: had to do it twice a day every day, which
• 31:12
  Speaker 3: is quite a lot, and it's a lot of pressure.
• 31:15
  Speaker 3: I think. Obviously as a parent, you do it. It's
• 31:18
  Speaker 3: your child, you do it. If it's going to help them,
• 31:20
  Speaker 3: you do it. But mentally it's a lot. It's a
• 31:24
  Speaker 3: lot to try and master, get to terms with it
• 31:29
  Speaker 3: and realize that you then have to do this on
• 31:31
  Speaker 3: your child, but you're doing it on your child to
• 31:33
  Speaker 3: give them the best possible outcome and the best possible life.
• 31:39
  Speaker 3: But I think the whole process with hir spruings is
• 31:42
  Speaker 3: a very very mentally challenging one, like ridiculously mentally challenging.
• 31:49
  Speaker 2: Yeah, And I think that that it is on everyone
• 31:54
  Speaker 2: errents and people with hir sprungs, And I think that's
• 31:58
  Speaker 2: something that I have I've talked to parents about a
• 32:03
  Speaker 2: little bit, but probably not as often as I would
• 32:05
  Speaker 2: like that there's a lot of invasive procedures when it
• 32:11
  Speaker 2: comes to hirsprungs, and I think that has a huge
• 32:17
  Speaker 2: toll mentally, especially if you are the person who is
• 32:22
  Speaker 2: performing the procedures as well. Yeah, you know, and I
• 32:25
  Speaker 2: think this is always going to be the thing of
• 32:28
  Speaker 2: young Am I doing this one hundred percent correctly? Am I?
• 32:31
  Speaker 2: You know all of that stuff? And I think same
• 32:34
  Speaker 2: with people with hirsprungs. Having a lot of invasive procedures,
• 32:38
  Speaker 2: especially within the stomach area as well, is very mentally draining.
• 32:45
  Speaker 2: And especially with the lot of research that I've read
• 32:51
  Speaker 2: in terms of the gut health and mental health being
• 32:56
  Speaker 2: hugely linked, I think it's not a surprise that hush
• 33:02
  Speaker 2: springs is quite a mentally draining, can be quite a
• 33:07
  Speaker 2: mentally draining condition.
• 33:09
  Speaker 3: Yeah, No, definitely, I do think, and I think sometimes
• 33:13
  Speaker 3: as well. I always thinking to myself, God, would I
• 33:16
  Speaker 3: like someday to be doing that to me all the time?
• 33:19
  Speaker 3: Do you know? And obviously it was a lot younger then,
• 33:23
  Speaker 3: but it seems to be harder the older he got.
• 33:28
  Speaker 3: All his thing was he loved going to the hospital
• 33:31
  Speaker 3: as soon as he took not well, loved loved it
• 33:35
  Speaker 3: the only child and a loved going to the hospital,
• 33:38
  Speaker 3: loved seeing everybody in the hospital. It was on first
• 33:42
  Speaker 3: name terms with all the doctors and nurses. We would
• 33:45
  Speaker 3: go up every single morning. We would be there from
• 33:48
  Speaker 3: like seven o'clock in the morning for the nurse change
• 33:50
  Speaker 3: over to see what happens through the night, and we
• 33:52
  Speaker 3: would be there the whole night until it got to
• 33:55
  Speaker 3: a point where it was on a ward where we
• 33:57
  Speaker 3: could stay, and we would go up and all he
• 34:01
  Speaker 3: would be sitting in his pam out at the nurses station,
• 34:04
  Speaker 3: just making pals, making friends with everybody. And that was
• 34:08
  Speaker 3: his thing, is if and a very stranger roundabout, where
• 34:13
  Speaker 3: as if that was a safe space being there because
• 34:17
  Speaker 3: he knew all the nurses, they knew who was looking
• 34:20
  Speaker 3: after them, and he got testede where in the hospital
• 34:23
  Speaker 3: if he had a candler or anything in literally struggled
• 34:28
  Speaker 3: massively with him. Eventually if he had them in his feet.
• 34:32
  Speaker 3: They would keep his socks on for him to go
• 34:35
  Speaker 3: to bed. And it seems to be that even now
• 34:38
  Speaker 3: he's a living he won't go to bed unless he's
• 34:40
  Speaker 3: got his socks on. It's like little things like that,
• 34:44
  Speaker 3: And I'm like, they obviously go in and they stay
• 34:46
  Speaker 3: in there because that's his normal. Yeah, that's his normal,
• 34:51
  Speaker 3: and he thinks it's not any different. But the older.
• 34:55
  Speaker 3: The older he got to take him to hospital, he
• 34:58
  Speaker 3: would know he wasn't well, But then it would be
• 35:02
  Speaker 3: the don need to get a drag? Don need to
• 35:04
  Speaker 3: get my bloods done? Do we need to touch my bum?
• 35:08
  Speaker 3: Do they need to put anything? And it was all
• 35:10
  Speaker 3: the kind of questions and all the questions sometimes I
• 35:13
  Speaker 3: didn't have the answer to. But then that made me
• 35:17
  Speaker 3: a bad person because I couldn't tell him, because me
• 35:20
  Speaker 3: then saying I don't know didn't help him in his
• 35:24
  Speaker 3: head come to terms with what was going to happen
• 35:27
  Speaker 3: when he got in there. At the same time, that.
• 35:32
  Speaker 2: Doesn't make you a bad person.
• 35:36
  Speaker 1: I do.
• 35:37
  Speaker 3: The whole time, I always somehow had an answer for him.
• 35:41
  Speaker 3: And then when he got older and he could ask questions,
• 35:44
  Speaker 3: and I was like, I'm not really the person but
• 35:48
  Speaker 3: to give you the answer to that question. But even now,
• 35:52
  Speaker 3: like when he's in hospital and then the older he's
• 35:55
  Speaker 3: got us as if it becomes a little bit more
• 35:57
  Speaker 3: reserved and shy and doesn't want to ask. If a
• 36:02
  Speaker 3: sudden speaking to him, it won't ask, it will look
• 36:05
  Speaker 3: at me as if do you ask? Or he'll say
• 36:10
  Speaker 3: it once they've walked away, and I'm like, you are
• 36:12
  Speaker 3: a bigger person now, you need to be the person
• 36:15
  Speaker 3: to ask the questions because I don't know, I don't
• 36:18
  Speaker 3: know what it feels like inside, I don't know. It
• 36:21
  Speaker 3: needs to come from him. He's the best person to
• 36:24
  Speaker 3: tell anybody.
• 36:26
  Speaker 2: Yeah, yeah, it's It's a tricky one, isn't it. It's
• 36:30
  Speaker 2: a really tricky one because yes, absolutely, you know he's
• 36:34
  Speaker 2: the one who knows how he's feeling. That would be
• 36:37
  Speaker 2: the best best place to ask those questions. But also,
• 36:41
  Speaker 2: I guess, being the age he is now, it can
• 36:44
  Speaker 2: sometimes be a bit tricky to talk about certain things
• 36:48
  Speaker 2: with hirshprungs. So it's that really tricky balancing act. I guess.
• 36:52
  Speaker 3: I think with obviously certain areas of hush sprungs, it's
• 36:57
  Speaker 3: a little bit private. It can be embarrassing. And I
• 37:01
  Speaker 3: get that. I do get that, and I'm like, you
• 37:04
  Speaker 3: need to Obviously, the older he's got and he's had,
• 37:09
  Speaker 3: he said, four rounds of the botox injections, which are
• 37:15
  Speaker 3: there essentially the TV train the brain to the Bible
• 37:19
  Speaker 3: on how to work and how to let go. Because
• 37:21
  Speaker 3: all these things the older he was getting, not even
• 37:26
  Speaker 3: the older he was getting, he seemed to have more
• 37:28
  Speaker 3: accidents at nighttime through the night, but obviously essentially everything's
• 37:34
  Speaker 3: more relaxed at night time. But on the same hand,
• 37:40
  Speaker 3: Ollie wasn't letting fully go during the day, so there
• 37:45
  Speaker 3: was too much at nighttime. So the boatox and injections
• 37:49
  Speaker 3: seemed to be the next option for him that weren't
• 37:52
  Speaker 3: necessarily invys of surgery related. Yeah, you got taken to
• 37:57
  Speaker 3: theater and put to sleep. We girl were only there
• 38:00
  Speaker 3: for about forty minutes and it was pretty straightforward and
• 38:04
  Speaker 3: everything was fine. So he had them four times. He's
• 38:09
  Speaker 3: had them now. The first three times didn't see any change,
• 38:14
  Speaker 3: but they do say it can work, it might not work,
• 38:18
  Speaker 3: but you need to try it. So the first three
• 38:21
  Speaker 3: times there was no significant change. Everything kind of has
• 38:24
  Speaker 3: stayed the same or in the fourth everything started to
• 38:29
  Speaker 3: change after the first week for maybe about four weeks
• 38:35
  Speaker 3: and then it went y back to normal again where
• 38:39
  Speaker 3: he was managing. He could tell you that he needed
• 38:41
  Speaker 3: to go to the toilet, whereas obviously with a child
• 38:45
  Speaker 3: of harsh spruings, depending on the form that you have,
• 38:50
  Speaker 3: you don't know that youth went to the toilet, which
• 38:53
  Speaker 3: was all the's thing that he struggled with massively and
• 38:55
  Speaker 3: we were trying to get it under control for going
• 38:59
  Speaker 3: to school. So when he started school, I had several
• 39:05
  Speaker 3: meetings with the school to obviously explain the situation and
• 39:08
  Speaker 3: that if all he needs to go to the toilet,
• 39:11
  Speaker 3: he needs to go there, and then he can't wait
• 39:15
  Speaker 3: three minutes until the teacher's done talking to somebody, because
• 39:18
  Speaker 3: in that three minutes everything can change. And I had
• 39:23
  Speaker 3: a bit of trouble with the school. I had taken
• 39:28
  Speaker 3: everything in from the care package and things that they
• 39:31
  Speaker 3: had from nursery, all who are letters and everything and
• 39:35
  Speaker 3: took it to the school and essentially the head teacher
• 39:38
  Speaker 3: at the school just said that I hadn't toilet trained
• 39:42
  Speaker 3: them and that I was lazy and I had taught
• 39:48
  Speaker 3: him how to go to the toilet for a pee,
• 39:49
  Speaker 3: that hadn't taught him how to go to the toilet
• 39:52
  Speaker 3: to go for a pair, and that's what the problem was.
• 39:57
  Speaker 3: So when he was at school, I was fighting a
• 40:02
  Speaker 3: losing battle. Didn't think that it would ever be a thing.
• 40:05
  Speaker 3: I didn't think I would then be questioned or meant
• 40:09
  Speaker 3: to feel that size with my child's disability. But I
• 40:13
  Speaker 3: was lazy and hadn't toilet trend him what was it?
• 40:18
  Speaker 2: I mean, I kiss the question would be today even
• 40:23
  Speaker 2: though what hirshprungs.
• 40:24
  Speaker 3: Was, so that was me. I took my little booklet
• 40:29
  Speaker 3: for all in and I asked her very politely if
• 40:33
  Speaker 3: she could have a read of it and then come
• 40:36
  Speaker 3: back to me if she still felt the same. So,
• 40:40
  Speaker 3: with that being said, and obviously them not really thinking
• 40:45
  Speaker 3: that there was anything wrong with Ollie, there was several,
• 40:49
  Speaker 3: very very several occasions Ollie would come home and he'd
• 40:52
  Speaker 3: had an accident, a significant accident. He was soiled. He
• 40:58
  Speaker 3: then I picked him up one day from school and
• 41:01
  Speaker 3: he had soiled and I could smell it when I
• 41:05
  Speaker 3: got him. So I was like, how could nobody else?
• 41:09
  Speaker 3: Surely somebody else, And then my thinking was he was
• 41:13
  Speaker 3: only in primary one, Primary two maybe, And I was like,
• 41:16
  Speaker 3: kids can be horrible, and with harsh springs especially. It's
• 41:22
  Speaker 3: always been my fear on how horrible kids can be.
• 41:25
  Speaker 3: And essentially it is probably the first pick to be
• 41:30
  Speaker 3: bullied if it's not under wraps and you don't take
• 41:34
  Speaker 3: care of it and have everything in place. So I
• 41:37
  Speaker 3: had got allway from school one day and he was soiled.
• 41:41
  Speaker 3: His bum was red raw and Essentially it turned into
• 41:47
  Speaker 3: a bacterial infection that he had because he had sat
• 41:52
  Speaker 3: and it was every single day it was happening and
• 41:55
  Speaker 3: he's been sitting for six hours and couldn't get it
• 42:01
  Speaker 3: under control. So I had to fight until he was
• 42:05
  Speaker 3: maybe in Primary three, primary four, and then eventually he
• 42:09
  Speaker 3: was given a one to one teacher for going to
• 42:14
  Speaker 3: the toilets and she did her research on HRS springs.
• 42:17
  Speaker 3: And I know not everybody knows about hush sprungs. There's
• 42:20
  Speaker 3: not going to be a teacher support out there that
• 42:23
  Speaker 3: knows essentially what it is. But ideally I wasn't asking
• 42:28
  Speaker 3: her to do anything related to hush sprungs. It was
• 42:31
  Speaker 3: just a case of please make sure he goes to
• 42:34
  Speaker 3: the toilet if he soiled, there's a bag of clothes
• 42:39
  Speaker 3: to change on, He's got wipes, he's got his creams,
• 42:42
  Speaker 3: he's got everything there to try and prevent that from
• 42:45
  Speaker 3: happening again. That happened for maybe six months, and then
• 42:51
  Speaker 3: that teacher left and they never told me all. He
• 42:57
  Speaker 3: came home one day and told me she had we
• 43:00
  Speaker 3: had a big daughter, but stayed in his bag and
• 43:02
  Speaker 3: she would fill it in and write if she had
• 43:05
  Speaker 3: to change them if she had to put his creams on,
• 43:07
  Speaker 3: what time and all that, so I could keep track
• 43:10
  Speaker 3: of it at school. Essentially more soft and he's surgeon
• 43:12
  Speaker 3: at the hospital who asks how he gets on at school,
• 43:16
  Speaker 3: and then I would do the same. So if he
• 43:19
  Speaker 3: had an extra source stomach or his bum had more
• 43:23
  Speaker 3: broke out, I would write it in the drawer and
• 43:24
  Speaker 3: then that would be fine. And then that was took
• 43:26
  Speaker 3: away without anybody telling me. So then we were right
• 43:31
  Speaker 3: back to square one again. Even now it's it's probably
• 43:37
  Speaker 3: fighting a losing battle. So then the teachers were like,
• 43:41
  Speaker 3: what if he has a toilet card? And I was like,
• 43:45
  Speaker 3: well that he should have had that from the beginning.
• 43:48
  Speaker 3: It took for him to get to primary five primary
• 43:50
  Speaker 3: six for us to realize or hang on a second
• 43:54
  Speaker 3: tier that is actually something. The amount as school that
• 43:57
  Speaker 3: he missed. He still missed his school, to be fair,
• 44:00
  Speaker 3: maybe not so much a lot now, but the amount
• 44:05
  Speaker 3: of school that he missed, and they still couldn't see
• 44:09
  Speaker 3: what the problem was or what was actually going on.
• 44:15
  Speaker 3: I think sometimes people are quite naive with it and
• 44:18
  Speaker 3: they just think it's just a source of work and
• 44:23
  Speaker 3: he all they could get up and they'd be like,
• 44:24
  Speaker 3: my stomachs really sore. You can hear it grumbling, you
• 44:28
  Speaker 3: can hear it gurgling, and you think it's happening, which
• 44:33
  Speaker 3: is what happened last week when I was supposed to
• 44:35
  Speaker 3: come on here. He got up that morning and you
• 44:38
  Speaker 3: could hear him gambling, and I was like, oh, here
• 44:41
  Speaker 3: we go, this is and he was. He was in
• 44:44
  Speaker 3: and out of the toilet all day. So I'm like,
• 44:46
  Speaker 3: it just literally can happen so quickly. He was fine
• 44:52
  Speaker 3: the night before, got up that morning and it was
• 44:56
  Speaker 3: it was their pain relief. Col Paul Britain. Everything seems
• 45:01
  Speaker 3: to be work. We'll go to there's mornings that he'll
• 45:05
  Speaker 3: get up and he needs to take it before he
• 45:07
  Speaker 3: goes to school. There's mornings he'll get up and it
• 45:10
  Speaker 3: gets hisself upset because he hates having hush sprugs. I've
• 45:15
  Speaker 3: had that on several occasions. I've had why was it
• 45:18
  Speaker 3: me that had to have hushprungs? Why could somebody else
• 45:22
  Speaker 3: not have it? And sometimes when he's in that frame
• 45:25
  Speaker 3: of mind, if I then try and help, it's there,
• 45:29
  Speaker 3: but you don't know what it feels like to have hushprungs.
• 45:32
  Speaker 3: And I'm like he's right, I don't. I can just
• 45:35
  Speaker 3: see him from the outside and know everything that he's
• 45:38
  Speaker 3: had done and everything he can do to help it,
• 45:41
  Speaker 3: but I physically don't know what it feels like, and
• 45:45
  Speaker 3: I never ever will.
• 45:48
  Speaker 2: No. I gether. I've been there, I've been there with
• 45:53
  Speaker 2: you know, why was I the one in five thousand?
• 45:55
  Speaker 1: You know?
• 45:56
  Speaker 2: Well I was only the one in five thousand, and unfortunately,
• 46:00
  Speaker 2: as we sit here, both of us don't have the answers.
• 46:04
  Speaker 2: You know, we can't say, well, actually it was because
• 46:07
  Speaker 2: of there isn't an answer.
• 46:10
  Speaker 3: And that I guess there isn't a definitive this is
• 46:13
  Speaker 3: the reason why you've got it or there's nothing. And
• 46:16
  Speaker 3: I obviously it's that I find more emotionally draining and
• 46:21
  Speaker 3: mentally draining now that he's at that stage in life
• 46:24
  Speaker 3: where he's like, well, why was it me? Why was
• 46:27
  Speaker 3: it not? And also he's not being diagnosed as of yet,
• 46:36
  Speaker 3: but there's an undiagnosis of ADHD to Allie, which is
• 46:42
  Speaker 3: surgeon actually picked up on a few years ago. A
• 46:46
  Speaker 3: few years ago, and then his uptician had kind of
• 46:48
  Speaker 3: picked up on. We have always thought it, but a
• 46:51
  Speaker 3: surgeon did say, obviously it's trauma related and the amount
• 46:57
  Speaker 3: of trauma that he's been through. He did say there
• 47:01
  Speaker 3: is a number of folk that do have harsh strungs
• 47:06
  Speaker 3: and ADHD or autism or because it is trauma related.
• 47:12
  Speaker 3: And when you think back to them being obviously newborns
• 47:16
  Speaker 3: up until now, that's a lot of trauma for one
• 47:18
  Speaker 3: person to deal with, and it's a lot.
• 47:23
  Speaker 2: It makes absolute sense. And also it's a lot of
• 47:27
  Speaker 2: trauma that we can't get out either because we can't
• 47:31
  Speaker 2: most of the time when everything's happening, we can't communicate,
• 47:35
  Speaker 2: never mind torks. So there's there's that as well.
• 47:40
  Speaker 3: I guess yeah, And we seem to notice that that
• 47:45
  Speaker 3: didn't really help the older he goot with hospitals and
• 47:50
  Speaker 3: the procedures and things to get done, because he then
• 47:54
  Speaker 3: gets an a zone head and it kicks it in
• 47:57
  Speaker 3: and he's like, well, I don't want to do that.
• 48:00
  Speaker 3: It's not he knows it's going to make him better,
• 48:03
  Speaker 3: but in that frame of mind, he's like, no, it's
• 48:07
  Speaker 3: too much. There's too much going on. And I get
• 48:10
  Speaker 3: that with them. So more recently, maybe I was say
• 48:17
  Speaker 3: August of last year, we were back in talks again
• 48:21
  Speaker 3: with the surgeon and it was the still the smearing
• 48:26
  Speaker 3: through the night seemed to be the problem essentially, and
• 48:31
  Speaker 3: it was it was more what works for us as
• 48:36
  Speaker 3: a family now more than it just being about Olie.
• 48:39
  Speaker 3: All he's obviously older, but it's what's going to help
• 48:44
  Speaker 3: He's bum his dad, his sister in this whole process,
• 48:48
  Speaker 3: because there's times that you've had to get up with
• 48:51
  Speaker 3: all that two, three, four, five in the morning, You've
• 48:54
  Speaker 3: had a stippy's bed, You've had to run in my bath,
• 48:56
  Speaker 3: everybody's up, the whole house is and turmoil. He's having
• 49:00
  Speaker 3: a broken slate. Everybody's having a broken slate, and it's
• 49:03
  Speaker 3: not helping any situation. Then he's missed in school because
• 49:07
  Speaker 3: he's at through the night, and then I can't get
• 49:08
  Speaker 3: him up in the morning because he's been awake for
• 49:11
  Speaker 3: four hours through the night. And I always, even still
• 49:18
  Speaker 3: now until then, I was always saying a stoma bag,
• 49:22
  Speaker 3: a stowa bag is definitely it worked. Then I don't
• 49:27
  Speaker 3: understand why it wouldn't work now he's older. So we
• 49:32
  Speaker 3: were then then spot to it and a surgeon obviously
• 49:35
  Speaker 3: didn't want another invasive surgery, which is fine. I get that.
• 49:40
  Speaker 3: I get that if there's not us. If you don't
• 49:42
  Speaker 3: need surgery, don't do it, that's fine. But they then
• 49:48
  Speaker 3: wanted us to try and director flush outs again at
• 49:54
  Speaker 3: the age of ten, and obviously with that diagnosis of ADHD,
• 50:02
  Speaker 3: I was like, mentally, it's just not going to work
• 50:07
  Speaker 3: for him. And then it would be he would have
• 50:10
  Speaker 3: to get it done. He could either get it done
• 50:13
  Speaker 3: every morning or every night. They gave us the stuff
• 50:18
  Speaker 3: home to try and I don't even think I can't
• 50:24
  Speaker 3: even remember the name of it. And we had the
• 50:31
  Speaker 3: little I don't even have one that I could Troy,
• 50:33
  Speaker 3: I can't even remember the name of it. And that
• 50:36
  Speaker 3: essentially would go in to taste bump and then you
• 50:39
  Speaker 3: would fill it with saline that way. But we stood
• 50:43
  Speaker 3: in the toilet, got him into the possession that needed
• 50:47
  Speaker 3: to be in and it wasn't even improperly and he
• 50:52
  Speaker 3: was screaming the place down, and right away, within that
• 50:55
  Speaker 3: thirty seconds, I was like, this is not going to work.
• 50:59
  Speaker 3: Before when the surgeon even gave it as an option,
• 51:02
  Speaker 3: right away, in my head, I'm like, no, I know, Ollie,
• 51:06
  Speaker 3: and I'm not being funny, but any child at age
• 51:09
  Speaker 3: of ten is not going to want to let you
• 51:11
  Speaker 3: do that. Let's be honest, that's too invasive. Yeah did
• 51:16
  Speaker 3: when he was a baby, but he was a newborn baby,
• 51:18
  Speaker 3: couldn't walk, couldn't talk, didn't really know what was happening.
• 51:22
  Speaker 3: Whereas now I'm like, mentally for me, I don't think
• 51:25
  Speaker 3: I could put them through that. And then he obviously
• 51:29
  Speaker 3: would need it done every single day, and with all
• 51:32
  Speaker 3: his frame of mind, he could have it done today,
• 51:35
  Speaker 3: book tomorrow. It could be like, I'm not Donner, I'm
• 51:39
  Speaker 3: not getting that done every single day, and then it
• 51:41
  Speaker 3: would be fighting a losing battle, and then we would
• 51:44
  Speaker 3: be right back to square one again. So then there
• 51:49
  Speaker 3: was talks of I'm getting a lap I'm I'm reading
• 51:53
  Speaker 3: this off my bit of paper because I don't know
• 51:55
  Speaker 3: how it was there at laproscopic appended a pendecost to.
• 52:00
  Speaker 2: Me, sounds good to be.
• 52:04
  Speaker 3: Bibeia is right? Is a sorry right there? I do apologiss.
• 52:09
  Speaker 3: But it shortened down as an ACE, so we'll call
• 52:12
  Speaker 3: it an S. So in November of twenty twenty five,
• 52:17
  Speaker 3: that's when you got that given and it's essentially it
• 52:21
  Speaker 3: is a still astoma, but it gets connected onto your appendix.
• 52:27
  Speaker 3: But because of Olie's previous reversal and pull through surgery.
• 52:35
  Speaker 3: Everything had turned upside down. So with that, your appendix
• 52:41
  Speaker 3: is essentially on your right hand side. When the surgeons
• 52:47
  Speaker 3: went to do Ollie's, Ollie's was on the left hand side.
• 52:52
  Speaker 3: Everything had moved right over. So I've still I've kept
• 52:57
  Speaker 3: this letter here because this is essentially everything that he
• 53:01
  Speaker 3: got done just in November there, so this is his
• 53:03
  Speaker 3: most recent and up to date hospital letter. So he
• 53:11
  Speaker 3: so everything was over just underneath the splen on his
• 53:15
  Speaker 3: left hand side, so his ace should essentially have been
• 53:20
  Speaker 3: on the right hand side, but everything was stuck to
• 53:24
  Speaker 3: his left and there was no way of moving anything.
• 53:26
  Speaker 3: So he now has he's a fitted on the left
• 53:29
  Speaker 3: hand side which is connected into his appendix. But it
• 53:33
  Speaker 3: kind of a it looks like a pigstail on the
• 53:38
  Speaker 3: end of it and it wraps it wraps round there.
• 53:43
  Speaker 3: So he's had that since November, and wow, what a difference.
• 53:51
  Speaker 3: We just do. He's flush outs through that with the bag,
• 53:56
  Speaker 3: hook them all on together, clean it all and he's
• 53:59
  Speaker 3: there and it takes about forty five minutes and he's done.
• 54:04
  Speaker 3: And he's now got to the stage where he does
• 54:07
  Speaker 3: it hisself. He's comfortable enough to do it hisself, and
• 54:11
  Speaker 3: he even said after the first few the first few weeks,
• 54:14
  Speaker 3: he was kind of really mm, obviously it's a foreign
• 54:18
  Speaker 3: object on you again, and it's quite a big thing,
• 54:22
  Speaker 3: and he wouldn't look at it or anything like that
• 54:25
  Speaker 3: to start with. But now he's more than comfortable. Won't
• 54:28
  Speaker 3: show anybody. It doesn't tell anybody, not a lot of people.
• 54:32
  Speaker 3: If you're family and very very close friends, you would
• 54:34
  Speaker 3: know only has hush burns because he would tell you.
• 54:37
  Speaker 3: But when he was younger, when after he had his reversal,
• 54:42
  Speaker 3: he had a big scar on his stomach and he
• 54:44
  Speaker 3: would go out and play with his friends and they
• 54:46
  Speaker 3: would notice the scar and he would tell them that
• 54:48
  Speaker 3: I'd been a bit bi a shark. He won't tell
• 54:52
  Speaker 3: them that he's got actually something wrong with him. So
• 54:56
  Speaker 3: now we've got the ace and that's been nowhere disembra
• 55:02
  Speaker 3: Jenny Veegue mark six months he's had it, and what
• 55:05
  Speaker 3: a difference that's meant, Yeah, to get them to where
• 55:09
  Speaker 3: he is now with the ice.
• 55:14
  Speaker 2: Yes, that's one thing I can talk about that I
• 55:16
  Speaker 2: do know about that I had done twenty five years ago.
• 55:23
  Speaker 2: It might be a little bit different then than it
• 55:26
  Speaker 2: is now. But in terms of obviously the ice itself
• 55:31
  Speaker 2: and where the size is. Is there anything put over
• 55:35
  Speaker 2: the ice so.
• 55:38
  Speaker 3: You don't have to you can go without, But because
• 55:43
  Speaker 3: it's connected to your attend it's quite a wet it's
• 55:49
  Speaker 3: quite a wet area with mucus and things because of
• 55:52
  Speaker 3: where it is will always be wet. So all he
• 55:55
  Speaker 3: just puts her dress and over the top of hers image,
• 55:59
  Speaker 3: just changed dressing every day along with when he gets
• 56:02
  Speaker 3: he's flush. He's had trial and error with dressing and things.
• 56:06
  Speaker 3: He's took an allergic reaction to the initial dressing, and
• 56:10
  Speaker 3: then I don't think he's skin just now will ever
• 56:13
  Speaker 3: really be completely clear because you're covering that piece of
• 56:18
  Speaker 3: skin with addressing every single day. It's going to dry up,
• 56:21
  Speaker 3: but it's going to be read and inflamed and things.
• 56:24
  Speaker 3: We've got several creams and things to put over the
• 56:27
  Speaker 3: top of it. If he's in the house, he's comfortable
• 56:30
  Speaker 3: enough to go without addressing. But if he's out and
• 56:32
  Speaker 3: about or anything, no, he needs to have a dressing on.
• 56:36
  Speaker 3: But I had found a page when he had a stoma.
• 56:39
  Speaker 3: He used to have stoma coverings and it would have
• 56:42
  Speaker 3: like Batman, Spyder Rank anything like that on it. But
• 56:45
  Speaker 3: I've found a page I don't know where their base,
• 56:49
  Speaker 3: but was on Facebook and they do little coverings and
• 56:52
  Speaker 3: things for it, so they're not that expensive. So I
• 56:55
  Speaker 3: think I'm going to get them a couple of them,
• 56:57
  Speaker 3: just so that he can keep the dressing off so often,
• 57:00
  Speaker 3: because his skin as obviously quite bad, but it's what's
• 57:06
  Speaker 3: keeping them going. And it's definitely done the track.
• 57:09
  Speaker 2: No, that's really really good to hear, really really dear.
• 57:12
  Speaker 2: I think I see it going back to my one.
• 57:15
  Speaker 2: I just I think I had what's called a tegaderm,
• 57:17
  Speaker 2: like a clear plaster essentially over the top, So I
• 57:22
  Speaker 2: think he's kind of similar, similar thing, but it's sort
• 57:24
  Speaker 2: of moved on a little bit, which is really really
• 57:27
  Speaker 2: good to hear. Yeah, but yeah, I think it's so
• 57:32
  Speaker 2: good to hear that the ACE is doing. He's doing
• 57:35
  Speaker 2: what it's what it's supposed to do. And yes, it's
• 57:38
  Speaker 2: really really improved his his quality of life, which is fantastic.
• 57:43
  Speaker 3: It's like a big never ending circle. You need to
• 57:45
  Speaker 3: try everything and go around every single option before you
• 57:49
  Speaker 3: find the one that's right for you. And now we're
• 57:53
  Speaker 3: just thinking why he could not I found the ACE sooner. Yeah,
• 57:58
  Speaker 3: but he's got it now. He's got it now, and
• 58:00
  Speaker 3: that's just the way it is now.
• 58:02
  Speaker 2: And then speaking of now, I know you talked about
• 58:05
  Speaker 2: the ICE, You've talked about how how well that ALIAS
• 58:08
  Speaker 2: gets gone. Yep, in terms of all him sell, how
• 58:13
  Speaker 2: how's he now and what do you sort of hope
• 58:16
  Speaker 2: for the future.
• 58:18
  Speaker 3: It is absolutely fine est though obviously has the odd
• 58:23
  Speaker 3: flair up so to say that will never ever go away,
• 58:26
  Speaker 3: regardless of whether he's got an ACE or not. Within
• 58:30
  Speaker 3: the year, they'll do an ACE update and he'll go
• 58:34
  Speaker 3: in and they'll have a check of it because he
• 58:35
  Speaker 3: has the child one. Just now, If when he goes
• 58:38
  Speaker 3: back into hospital within the year they think that he
• 58:41
  Speaker 3: still needs they can then change the ACE to then
• 58:46
  Speaker 3: I'm sure it's a button and it's just a bigger
• 58:49
  Speaker 3: one for him because obviously he's grown with it. But
• 58:53
  Speaker 3: that would obviously be up to the surgeons and whether
• 58:55
  Speaker 3: or not they think if it's been beneficial for this
• 58:58
  Speaker 3: length of time, then they might just be like, right,
• 59:01
  Speaker 3: that needs to be a thing that he does have
• 59:04
  Speaker 3: for another while and then review it all again and
• 59:06
  Speaker 3: then see what's what when needs to be a bit
• 59:09
  Speaker 3: older but it's not stopped him doing anything. He's a
• 59:11
  Speaker 3: football he doesn't he's wild. He's absolutely wild. You would
• 59:15
  Speaker 3: never ever think, like even when we're talking to some
• 59:18
  Speaker 3: people and that you would never think he had anything
• 59:21
  Speaker 3: wrong with him. But it's because it's what's on then side.
• 59:24
  Speaker 2: Yeah, yeah, exactly. But that's that's so good to hear
• 59:27
  Speaker 2: that it hasn't you know, it hasn't stopped him from
• 59:29
  Speaker 2: playing football or running around or anything like that. That's
• 59:33
  Speaker 2: that is is so good to hear, especially people think, oh,
• 59:36
  Speaker 2: I've got a stormer and I might not be able
• 59:38
  Speaker 2: to do this. That the other but really really really
• 59:40
  Speaker 2: good one.
• 59:42
  Speaker 3: Before he got easy, it was the first thing that
• 59:44
  Speaker 3: he asked was would they still be able to play football?
• 59:47
  Speaker 3: And as surgeon luckily the surgeon that we had was
• 59:51
  Speaker 3: very sporty, was very sports orientated, and it was like,
• 59:54
  Speaker 3: I would never take it away. It was like, so
• 59:56
  Speaker 3: I know that if you have this, it's not going
• 59:58
  Speaker 3: to stop you, and it's not. It really really hasn't.
• 1:00:01
  Speaker 3: And it's amazing to see how fat he's come from
• 1:00:04
  Speaker 3: being a really really poorly baby. Touch and go to
• 1:00:08
  Speaker 3: now is eleven. Yeah, he's got an ace and it's there,
• 1:00:13
  Speaker 3: but it's doing.
• 1:00:14
  Speaker 2: It job brilliant. No, it's so good to hear. But
• 1:00:17
  Speaker 2: thank you so so much coming on. This has been
• 1:00:20
  Speaker 2: an episode and I wish, obviously you'll ee yourself and
• 1:00:24
  Speaker 2: the rest of the family all the very best for
• 1:00:25
  Speaker 2: the future.
• 1:00:26
  Speaker 3: Thank you so that. Thank you for having me, Thank
• 1:00:32
  Speaker 3: you for.
• 1:00:33
  Speaker 1: Listening and being part of this growing community. If you
• 1:00:36
  Speaker 1: have enjoyed the episode, don't forget to subscribe, leave a review,
• 1:00:40
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• 1:00:42
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  Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast. See you
• 1:00:50
  Speaker 1: next week.