Latest / Tom's Hirschsprung's Podcast / Episode 41 - With Georgina Merckel

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Episode 41 - With Georgina Merckel · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode forty one of Tom's Hirshprung's podcast. I bring to
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Speaker 1: you again today another fascinating Hirshbrung's story by what I
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Speaker 1: believe to be is probably the youngest youngest child will
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Speaker 1: talk about on the podcast so far, just around about
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Speaker 1: five months old with me today to share her sons.
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Speaker 1: Freddie's story is Georgina. Georgina, welcome to the podcast.
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Speaker 2: Hello, thanks for having me.
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Speaker 1: My pleasure. Thank you so much for coming along. And
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Speaker 1: as I mentioned, Freddy is only five months old. And
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Speaker 1: I think, as I said to my message, I said,
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Speaker 1: you must be really, really busy, so don't worry if
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Speaker 1: you don't want to come on the podcast. But you
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Speaker 1: were like, no, no, it's good, we'll go for it.
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Speaker 1: So thank you so so much for being here, because
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Speaker 1: you must be rushed off your feet with a five
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Speaker 1: month old.
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Speaker 2: Oh you're welcome. No, I felt like it was. It's
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Speaker 2: super important, isn't it to capture the information where you're
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Speaker 2: at because in a few months time things could change again.
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Speaker 2: So it was really nice when you reached out to
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Speaker 2: me because I thought it's really great time to share
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Speaker 2: a story.
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Speaker 1: Fantastic timing. Thanks for so much for coming along, and
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Speaker 1: just on, Freddie will start from the very beginning, if
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Speaker 1: we may, so, Freddie was born in April of this year,
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Speaker 1: and then would you like to take it from there?
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Speaker 2: Yeah, so Freddie was born back in April. He was
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Speaker 2: born absolutely find no problems, and we went onto the
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Speaker 2: ward and I mean, he was a little bit sicky,
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Speaker 2: as babies are, and the midwife said to me, oh,
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Speaker 2: we're not quite sure how much sick is the right amount,
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Speaker 2: so we're going to call a pediatric doctor to come down.
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Speaker 2: And the piece doctor came down, She's like, oh, he's
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Speaker 2: a bit more sick than i'd expect. I'll call another doctor.
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Speaker 2: And another doctor came and said, this is really normal.
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Speaker 2: Babies be sick when they've been born. So that was
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Speaker 2: like the first the first ever sign I guess of Hirshbrung's.
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Speaker 2: But we went through another day and pretty similar. He
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Speaker 2: was a big, chunky baby. He was absolutely fine, well colored,
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Speaker 2: like they seemed like there was nothing wrong with him.
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Speaker 2: And on his second day, I was really pushing for
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Speaker 2: us to go home because he'd passed his baby check
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Speaker 2: and the only thing that he hadn't passed was that
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Speaker 2: he'd passed any maconium. And they told me not to
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Speaker 2: worry about it because you know it'll happen. Some babies
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Speaker 2: take longer than usual, and we'll just go with it.
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Speaker 2: So I was pushing because every time I mentioned, ah,
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Speaker 2: well he still hasn't done it or he's still a
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Speaker 2: bit sticky, they said, that's normal. He looks well, he
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Speaker 2: seems well, he's feeding. We've got no worries. So that
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Speaker 2: was kind of the start, and then on that second
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Speaker 2: day I really pushed. I said, you know, I'm not
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Speaker 2: an irresponsible person. If we go home and he's still
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Speaker 2: not pass any mcconian by tomorrow, we can come back
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Speaker 2: and you can see him then and we can make
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Speaker 2: a plan. Like you're not worried, then, I'm not worried.
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Speaker 2: And they said no, you have to stay in and
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Speaker 2: they said, oh, we'll do a give him a suppository
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Speaker 2: and see what happens. And I said to the doctor, great,
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Speaker 2: So I'm like, what's the chances that this will work,
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Speaker 2: and she went one hundred percent. You know, fifteen minutes,
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Speaker 2: you'll you'll definitely pass my cone. You can go home.
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Speaker 2: So I find my husband. I said, come back, because
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Speaker 2: we're going to go home. And they came and did
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Speaker 2: the suppository and an hour later, two hours later, nothing
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Speaker 2: and so I was really frustrated. And another doctor came
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Speaker 2: and he said, we have the same conversation again, and
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Speaker 2: he just said, I'm going to go and speak to
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Speaker 2: the consultant in charge, but I'm pretty sure she's gonna
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Speaker 2: ask you to stay, but I think you're quite responsible.
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Speaker 2: I'll try and back for you to go home. So
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Speaker 2: at this point I had no idea about hirshbrungs. I'd
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Speaker 2: never even heard the word. And the doctor came back,
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Speaker 2: he said, no, consultant says she'll have to stay. She'll
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Speaker 2: come and see you tomorrow and make a plan from there.
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Speaker 2: So it's like fine. My husband left, and about eleven
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Speaker 2: o'clock a doctor arrived and he took a look at
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Speaker 2: Freddie and he said he's got a bit of a
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Speaker 2: big tummy. It's been a while since he was born.
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Speaker 2: We haven't seen any maconium. We'll do another suppository in
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Speaker 2: about two hours, we'll do an next RAYE no sign.
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Speaker 2: And I was like, great, we have a plan, Like
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Speaker 2: something's happening. And as he walked out the room, we
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Speaker 2: came back and he went actually an hour, do the oppository,
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Speaker 2: wait an hour x ray. That was like great, So
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Speaker 2: he left. They did the suppository, no sign, and then
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Speaker 2: an hour later came and we went down to the
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Speaker 2: x ray, and just as they were about to x
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Speaker 2: ray him, I got call from the doctor and he said, actually,
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Speaker 2: I want to put an MG tube down his nose
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Speaker 2: and then we'll do the x ray. So we went
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Speaker 2: all the way back up. They put the NG tube
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Speaker 2: down his nose, and then they said, right, go for
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Speaker 2: the x ray. I went by downstairs for the x
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Speaker 2: ray and I could see on the x ray be
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Speaker 2: cause I was stood behind the screen. That's something wasn't
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Speaker 2: quite right. There were just these big I can know
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Speaker 2: them now is what they call looped bowl. But it
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Speaker 2: was just like everything didn't seem in the right proportion
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Speaker 2: that you imagine it should be when you've watched TV
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Speaker 2: medical TV. And so we went back upstairs and the
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Speaker 2: loxor came and took us to a treatment room. And
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Speaker 2: this is like the middle of the night. Now it's
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Speaker 2: at one o'clock in the morning, and he said, I'm
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Speaker 2: not quite sure with the x ray. The radiology radiographer
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Speaker 2: is just doing like a report to see what happens,
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Speaker 2: but it doesn't look quite right. So my plan is
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Speaker 2: to get you back to bed. I'm going to call
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Speaker 2: the surgeons out All the Hay because that's our closest
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Speaker 2: surgical center for babies, and depending on what they say,
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Speaker 2: will probably pop them in Skaboo so special Care baby
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Speaker 2: in it overnight and then tomorrow will transfate to All
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Speaker 2: the Hay and an ambulance. It's like it might not
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Speaker 2: be anything to worry about, but I'm not sure and
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Speaker 2: I don't want to do anything. And I said, no problem,
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Speaker 2: that sounds good to me. Like I was quite calm
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Speaker 2: at this point because I felt like things were actually
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Speaker 2: happening and we were being looked after. And at that
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Speaker 2: same time, one of the nurses popped through who'd been
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Speaker 2: done the suppositories, and she said, I'm glad you're getting
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Speaker 2: sorted because I thought there was quite a lot of
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Speaker 2: sick on the sheet, which he said, what's sick? And
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Speaker 2: I said, always been being sick since like he was
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Speaker 2: sort of born but and he's like, yeah, normal, and
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Speaker 2: I was like, yeah, everyone says it's normal. And then
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Speaker 2: he just looked at the other nurse and he was like,
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Speaker 2: I'm not really sure. Let's go straight to special care
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Speaker 2: baby in it. So off we went, and that was
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Speaker 2: kind of where like the wheel started turning in terms
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Speaker 2: of the motion of the Hirshprungs diagnosis. Nobody said anything
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Speaker 2: to me about Hirshprungs then, but they sort of settled him,
7:21
Speaker 2: put him on a drip. There was like some sort
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Speaker 2: of multi team phone call going on with the consultants
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Speaker 2: at home, the seem older Hay, some paramedics in Warrington
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Speaker 2: or trying to work out what was happening next. And
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Speaker 2: about four five o'clock in the morning, an ambulance came
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Speaker 2: and took us to all older Hay. So it was
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Speaker 2: happening much quicker than I thought I believed. And then
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Speaker 2: give it a few hours and we were older Hay.
7:48
Speaker 2: We were seeing the consultant and he said, I'm going
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Speaker 2: to do some washouts. He's very backed up, and they
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Speaker 2: started doing what we now know are like irrigate, so
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Speaker 2: washing out his bow, trying to get as much as
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Speaker 2: whatever was stuck in there out and he said, we've
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Speaker 2: got some things to look at about what it could be,
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Speaker 2: but I want to do some biopsies and that will
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Speaker 2: take us a few days to get him settled enough
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Speaker 2: to do them. And so we spent eight days at
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Speaker 2: all the hay and on our last day was when
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Speaker 2: we got the Hirshbungs diagnosis. So they did some suction
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Speaker 2: biopsies and the first one, which was like one centimeter,
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Speaker 2: was inconclusive, but the second, the two centimeter and three
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Speaker 2: centimeter ones were Hirshbung's A ganglamic cells. And then they
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Speaker 2: sort of said, we're talking taught how to do washouts,
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Speaker 2: and they sort of said, you're going to go home.
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Speaker 2: You're going to do the washouts, and you're going to
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Speaker 2: we're going to go into a caseload of as surgeon
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Speaker 2: whose expertise is Hirshbrungs, and then you'll probably need an
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Speaker 2: operation and that's it, and off we went home. So
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Speaker 2: that is literally like the first, you know, the nine
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Speaker 2: days of his life.
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Speaker 1: Soon So the first time you mentioned that it maybe
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Speaker 1: Hirshbrngs was just sort of a couple of days before
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Speaker 1: you left.
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Speaker 2: Yeah, so on the day we arrived, one of the
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Speaker 2: doctors had a student in. The consultant who's looking after
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Speaker 2: us had a consultant in, and he said to the student,
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Speaker 2: what am I looking for for hirshbruns? What's indicative? And
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Speaker 2: he said, sorry, mum. He says, we go through all
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Speaker 2: sorts of diagnoses to get to what we're looking at.
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Speaker 2: And it's a teaching hospital, right, So that word was mentioned. Obviously,
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Speaker 2: I googled it. I goggled everything under the sun to
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Speaker 2: find out what we were there for and what it
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Speaker 2: could be, and so I'd read about it by the
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Speaker 2: time we got the diagnosis, so we weren't surprised. I
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Speaker 2: think we were sort of expecting that maybe, you know,
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Speaker 2: there's lots of babies who I've read about now on
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Speaker 2: the internet who have are the same symptoms and then
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Speaker 2: they get told it's not hirshbrongs and they're not sure
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Speaker 2: what it is. And I thought maybe we were going
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Speaker 2: to be one of them, and actually felt quite relieved
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Speaker 2: when we got the diagnosis because it meant at least
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Speaker 2: we had something, we knew what it was, and we
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Speaker 2: knew what was going to happen sort of. So yeah,
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Speaker 2: but it wasn't really sort of described in much detail
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Speaker 2: like that. Last day, I was like, this is hirshbrngs.
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Speaker 2: This is what it is, and.
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Speaker 1: Yeah, fantastic. So but originally as well, I imagine we'll
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Speaker 1: move on to this shortly. But originally diagnosed with short
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Speaker 1: segment hirshbrungs.
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Speaker 2: Yeah, so they didn't give us a specific like diagnosis
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Speaker 2: of short segment hirshbrungs. They didn't do a contrast enema
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Speaker 2: when he was in neonatal. They talked about doing one
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Speaker 2: and then they didn't. And when we met our consultant
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Speaker 2: in person, she said, there's like, you know, sometimes they'll
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Speaker 2: do one, sometimes they don't, just depends on how you
10:46
Speaker 2: respond into the washouts, which he was responding well to.
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Speaker 2: So because of that, they presumed that it was short
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Speaker 2: segment Hirshbrungs disease, and that because he was he did
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Speaker 2: well with the washouts and we actually puoed on his
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Speaker 2: own few times. We just sort of assumed, and so
11:03
Speaker 2: did the doctors, that that was a really good sign
11:06
Speaker 2: that you know, he'd got some ganglon excels somewhere that
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Speaker 2: were causing this, and so that's just what we assumed
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Speaker 2: so we did four months of washouts, presuming that it
11:18
Speaker 2: was going to be short segment. Hirshprungs. We were going
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Speaker 2: for a pull through surgery and it was going to
11:22
Speaker 2: be a couple of centimeters, I guess, and that was
11:25
Speaker 2: what we were expecting.
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Speaker 1: And then it didn't turn out to be short segments.
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Speaker 1: So were you explained that the possibility that there might
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Speaker 1: be long segment or short segment and they weren't sure
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Speaker 1: or did they tell you it's definitely short segment then
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Speaker 1: it turned out to be long segment.
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Speaker 2: No, they didn't say it was definitely one thing. When
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Speaker 2: when we asked, when we met our consultant, we asked,
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Speaker 2: you know, presuming that it's you know fairly what I
11:53
Speaker 2: would say, you know, when you don't really have the
11:55
Speaker 2: terms until someone gives you them. So like mild, I
11:58
Speaker 2: guess is like one of the words I might have used.
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Speaker 2: And she said, we can assume that, but we can
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Speaker 2: never say because we don't know until we get in there.
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Speaker 2: And that's why we go in and we do the biopsies.
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Speaker 2: And he was going to have laparoscopic biopsies and a
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Speaker 2: transa in or pull through. So that was the plan
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Speaker 2: and we between going home from the washouts and the surgery,
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Speaker 2: we met with the nurse practitioner every month or twice
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Speaker 2: a month to check that the washouts were going well,
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Speaker 2: that his tommy wasn't distended, and although we had a
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Speaker 2: bigger tummy, we didn't really have sort of any signs
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Speaker 2: that there was anything not quite right there.
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Speaker 1: So pretty was fitted with or had surgery for stoma. Yes, well,
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Speaker 1: you explained to what type of stoma he was going
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Speaker 1: to have.
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Speaker 2: So we went into the surgery thinking it was pulled
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Speaker 2: through surgery, and that's exactly what everybody else thought. And
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Speaker 2: we went off into Liverpool for shopping and sort of
13:07
Speaker 2: distract us from the fact that he was under general
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Speaker 2: and anesthetic, and we got a phone call from the
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Speaker 2: surgeon to say she'd gone in, she'd done the biopsies.
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Speaker 2: It was six hours in and she still hadn't started
13:18
Speaker 2: the surgery because every biopsy was coming back with any
13:21
Speaker 2: ganga on it cells and it affected almost all of
13:24
Speaker 2: his large in testing. So she explained on the phone
13:27
Speaker 2: that she was going to remove a large chunk of
13:32
Speaker 2: his large intestine, and that was because where we'd been
13:35
Speaker 2: washing out wasn't clear but above that, so across the
13:39
Speaker 2: top and down to where his appendix is. That was
13:42
Speaker 2: all this tended and swollen and basically full like a
13:47
Speaker 2: bowel obstruction. So she was going to take out that,
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Speaker 2: and she'd got about fifteen centimeters of bowel left, she thought,
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Speaker 2: and that she was going to give him an ily
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Speaker 2: asked me, and at the point on the phone call,
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Speaker 2: she said she hadn't decided between a colostomy or an iliostomy.
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Speaker 2: It depended on the biopsy on this last fifteen centimeters,
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Speaker 2: whether it was like transitional zone where it had like
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Speaker 2: a mix of cells, or whether it was she felt
14:15
Speaker 2: that it was it had lots of ganglion cells. So
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Speaker 2: she said she hoped that we trusted her to make
14:22
Speaker 2: the decision that was invest Freddy's best interest, because she said,
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Speaker 2: I want to preserve if it works as much as
14:28
Speaker 2: this fifteen centimeters as possible to use it in the future.
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Speaker 2: So that was sort of the phone call we had,
14:35
Speaker 2: and then we got back to the hospital and a
14:38
Speaker 2: couple of hours later it came out of surgery and
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Speaker 2: she explained that she'd given him an aliostomy out of
14:44
Speaker 2: his small intestine, so he's got that, and then this
14:49
Speaker 2: fifteen centimeters of bowel has been turned into a mucus
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Speaker 2: fistula and a chronic blowhole. So he's got three stonmers
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Speaker 2: like in a row, and this becaus vistula starts off
15:01
Speaker 2: small and testine where she's cut it for the iliostomy,
15:03
Speaker 2: and then it goes into the pouch between the small
15:06
Speaker 2: intestine and the large intestine, and then it becomes the
15:09
Speaker 2: large intestine and that's where the blowhole is. And the
15:11
Speaker 2: idea of that between being any mucus can run out
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Speaker 2: so it stays alive and stays healthy. That sort of
15:19
Speaker 2: gives it a chance to rest because it's obviously been
15:21
Speaker 2: like the end of this completely distended in testing, and
15:25
Speaker 2: that if it did get infected, it could be flushed
15:27
Speaker 2: out and cleaned with antiseptic solution or antibiotic solution and sort
15:32
Speaker 2: of go from there. So and that can she said,
15:37
Speaker 2: this solution that he's got now is obviously temporary, what
15:39
Speaker 2: could be years, so there's no rush to make any
15:43
Speaker 2: decisions going forward.
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Speaker 1: Fantastic, So you've got plenty of options then.
15:50
Speaker 2: Yeah, So we're going to sit down with the Hirshbrings panel,
15:53
Speaker 2: so our surgeon and probably a couple of other consultants
15:57
Speaker 2: who've seen long segment hirshbrings disease, and some researchers that
16:03
Speaker 2: work on the team that are doing research into hashbrungs
16:06
Speaker 2: as well, and trainees and things like that. Wants the
16:10
Speaker 2: pathologist has seen all the biopsies and review all of
16:12
Speaker 2: it because that will indicate how much of this fifteen
16:15
Speaker 2: centimeters works properly, and then they'll sort of come up
16:19
Speaker 2: with some solutions and plans in the future, whether that's
16:22
Speaker 2: waiting a long time before we do something, whether it's
16:24
Speaker 2: doing something sooner rather than later. But also, she explained,
16:28
Speaker 2: is how well the stone's settled. So depending on how
16:31
Speaker 2: much output he had and if he was getting on
16:33
Speaker 2: with it okay, would indicate whether we needed to make
16:35
Speaker 2: a quicker decision or we've got time. So at the moment,
16:40
Speaker 2: like he's quite settled with the stone, Mary has to
16:42
Speaker 2: take low paramide and sodium in order to balance like
16:48
Speaker 2: his electrolyte balance, and because he had a lot of
16:51
Speaker 2: output in the beginning. But it seems to have settled
16:54
Speaker 2: down now, so it doesn't look like there'll be any
16:56
Speaker 2: rush to do anything, but we will have options for
16:58
Speaker 2: sort of reconstruction at some point and they do. From
17:02
Speaker 2: what I've read and people's stories, they do all sorts
17:06
Speaker 2: of weird and wonderful things to try and give you
17:11
Speaker 2: the best opportunity to be able to go to the toilet.
17:15
Speaker 2: And whether we keep the stone or not is something
17:17
Speaker 2: that we all decide in the future. I guess.
17:20
Speaker 1: Yeah, across that bridge from when you come to it,
17:22
Speaker 1: I take it. I'm guessing possibly by the time this
17:27
Speaker 1: podcast episode is out in well a month's time as well,
17:31
Speaker 1: just before a month start, three weeks time from when
17:33
Speaker 1: we're recording, we might know. You might know more in
17:37
Speaker 1: terms of answers.
17:38
Speaker 2: Amazing. I think they said it could be a couple
17:41
Speaker 2: of three or four months because they're going to get
17:43
Speaker 2: that pathologist to look through and then we'll sit down
17:46
Speaker 2: and have a chat. But I can't imagine that we'll
17:48
Speaker 2: do anything for the next seven eight months anyway, So
17:51
Speaker 2: they'll be like a nice lull where we just sort
17:54
Speaker 2: of settle into Stonma life and then go from there afterwards.
17:59
Speaker 1: Nice to stay out of hospitals for a while.
18:01
Speaker 2: Yeah, I know. I counted at the other day and
18:04
Speaker 2: out at the time when he was four months old,
18:07
Speaker 2: we'd spent thirty one days in hospital, So that was
18:11
Speaker 2: like a quarter of his life, which is just we
18:15
Speaker 2: should just crazy. That doesn't even count, Like the appointments
18:17
Speaker 2: that don't take place in hospital. That which that's just
18:20
Speaker 2: like all you know, all the home visits and the
18:22
Speaker 2: doctor's appointments and all the clinic appointments. No, that's just
18:25
Speaker 2: hospital stuff. So yeah, that's quite it feels like quite
18:28
Speaker 2: a lot. And you know, Freddy has been remarkably well
18:32
Speaker 2: through the whole experience. You know, he's a well baby.
18:35
Speaker 2: He doesn't look on well, you know, have had like
18:38
Speaker 2: little blips where he is dehydrated or he looks poorly,
18:41
Speaker 2: but he really recovers well. And I think that's probably
18:43
Speaker 2: why everyone thought he was it was short segment Hirshbrong's
18:47
Speaker 2: because he you know, really never had any sort of
18:49
Speaker 2: indication that he was quite poorly. So you know, there's
18:54
Speaker 2: lots of babies out there that have a different experience
18:56
Speaker 2: and a quite unwell for a long time. So you know,
18:59
Speaker 2: I feel like quite you with that.
19:01
Speaker 1: No, that's really really good to hear. And just told
19:04
Speaker 1: me to me a little bit just about Freddy as
19:06
Speaker 1: a person over the last five months. How has he changed?
19:11
Speaker 2: I mean, he's growing like any baby. He is noisy
19:16
Speaker 2: and happy and expressive, and you know, it's quite deceiving
19:22
Speaker 2: that he has been so unwell. You know. The consultant
19:25
Speaker 2: said to me, it's just a miracle that you've made
19:27
Speaker 2: it through four months of washouts, because she's like, we
19:29
Speaker 2: should have seen you in like inclinic complaining that you
19:33
Speaker 2: were struggling, that he would seem in pain, because you know,
19:36
Speaker 2: he had like such a large bowel obstruction, so much
19:39
Speaker 2: dissension that he should have just been really not well.
19:43
Speaker 2: And we only had one instance of entrocolitis and caught
19:46
Speaker 2: it super early. So like I've felt quite fortunate with that.
19:52
Speaker 2: And that's hard as well, because when people see you
19:54
Speaker 2: look well, it's that hidden disabilities thing. People assume your well.
19:57
Speaker 2: So people look at him and think he's a weld baby.
20:00
Speaker 2: You know, there's sort of nothing wrong with him, and
20:03
Speaker 2: it's sort of an adjustment to remember or remind people
20:06
Speaker 2: or as particularly close people in our lives or ourselves,
20:10
Speaker 2: that he hasn't quite been, you know, one well, even
20:13
Speaker 2: though he looks like it and he seems very happy.
20:15
Speaker 1: Yeah, I think so. I think that's something that's really
20:17
Speaker 1: important to remember. And I have this obviously first hand
20:21
Speaker 1: with having all manner of scars, but if you look
20:24
Speaker 1: at me just normally, you'd never you'd never know the difference.
20:27
Speaker 1: And I think that's the same with a lot of
20:29
Speaker 1: Hirschfrung's people. They've had multiple operations more than likely, some
20:35
Speaker 1: have only a few, some have quite a few. And
20:40
Speaker 1: I had a guest on the other week he's had
20:41
Speaker 1: one hundred and forty eight, as she mentioned on the podcast,
20:44
Speaker 1: But I think that's a little bit out of the ordinary,
20:48
Speaker 1: but you would never know, And that is something that
20:52
Speaker 1: I really wanted from the podcast as well, is to
20:55
Speaker 1: show people that you can go and do you know,
20:58
Speaker 1: so many things, and hirshbrungs, yes, there'll be difficult times
21:02
Speaker 1: here and there, of course, but there are so many
21:06
Speaker 1: things that you can go and do and it shouldn't
21:10
Speaker 1: it shouldn't stop you. I mean, the twenty five I
21:14
Speaker 1: believe guests have had on this podcast all do so
21:17
Speaker 1: many different things. And there are people who haven't had
21:21
Speaker 1: on this podcast, as people who a man I'm hopefully
21:24
Speaker 1: having on soon who's a professional boxer with Hirshbrung's, so
21:29
Speaker 1: you know, I've had actors, actresses, all sorts, so it
21:33
Speaker 1: shouldn't it shouldn't hopefully shouldn't stand in your way at all,
21:39
Speaker 1: and I'd like to as well just move onlo to
21:42
Speaker 1: where I found your story social media, Instagram and Facebook.
21:48
Speaker 1: And you started the or Freddie's story very early into
21:53
Speaker 1: his life. And as you said when we were talking
21:56
Speaker 1: off their most people wait sort of eight months to
21:59
Speaker 1: a year before before starting. Why did you think, right,
22:02
Speaker 1: I'm going to start sort of pretty much straight away.
22:06
Speaker 2: I think it was so hard in the beginning. For
22:09
Speaker 2: the first months and a half, I didn't even know
22:14
Speaker 2: that there were groups on Facebook. And my consultant recommended it,
22:17
Speaker 2: she said. We went in to see her and she said,
22:20
Speaker 2: you know that, have you joined any of the family groups?
22:23
Speaker 2: And I was like, family groups? What are they? And
22:27
Speaker 2: I think it's really normal and you're going through something
22:30
Speaker 2: like this to not want to share because it's scary
22:34
Speaker 2: and you don't know what's going to happen, and people
22:37
Speaker 2: ask questions. But I've got such a big family and
22:41
Speaker 2: we were updating everybody through WhatsApp constantly, you know, people
22:44
Speaker 2: were and at the beginning, through my dad, I would
22:47
Speaker 2: update him and he would update everybody else. And then
22:49
Speaker 2: I started doing it myself, and it's really it was
22:52
Speaker 2: really cathartic writing the updates, you know, the daily updates
22:55
Speaker 2: about what had happened, and trying to explain it. And
23:01
Speaker 2: I was searching just Instagram mostly. I didn't really start
23:05
Speaker 2: with Facebook and tell me about he was about six
23:06
Speaker 2: weeks old, but right from that first ten days Instagram
23:10
Speaker 2: searching for people hirshbrungs, looking for the word and struggling
23:15
Speaker 2: to find a lot of people, and particularly struggling to
23:20
Speaker 2: find anybody in that baby stage, like that really early
23:22
Speaker 2: baby stage, because obviously that's when you're just new to
23:25
Speaker 2: it and you don't know. So I decided and I
23:28
Speaker 2: talked to my husband quite a bit about sharing some
23:30
Speaker 2: parts of the story with people, and then I did
23:34
Speaker 2: it a few times, and actually it was really helpful
23:37
Speaker 2: for me, but also for the people and people who
23:40
Speaker 2: don't know anything about hirshbrungs learning something new and also
23:43
Speaker 2: meeting others who've got experience of hirshprungs or other conditions,
23:47
Speaker 2: you know. So that was, yeah, that's where it all started,
23:52
Speaker 2: and I've just sort of carried on connecting with people
23:56
Speaker 2: and sharing what we're experiencing as we're going through it
23:59
Speaker 2: rather than sort of as much as I can do
24:03
Speaker 2: while also protecting Freddy's identity, because I felt like it
24:07
Speaker 2: was really important that this is his story and that
24:10
Speaker 2: he shares it when, if, and when he's ever ready to.
24:13
Speaker 2: You know, right now, I doesn't have any choice in that,
24:15
Speaker 2: But what I could do is share my experience of this,
24:21
Speaker 2: and if and when he ever is old enough to
24:24
Speaker 2: and decides to share, then he can do that. But
24:28
Speaker 2: more about like the experience that we've been through as parents,
24:31
Speaker 2: because you know, you don't don't you don't expect to
24:34
Speaker 2: have a baby or a child he's got any sort
24:36
Speaker 2: of medical needs or additional needs. You don't expect this
24:40
Speaker 2: to be the experience that you have when you have
24:42
Speaker 2: a baby, so and that can be quite a lonely one.
24:46
Speaker 2: So I felt like I felt like it was helpful
24:49
Speaker 2: for me and for other people if I started sharing
24:51
Speaker 2: what was going on with us.
24:53
Speaker 1: Yeah, yeah, I mean your your Instagram reels videos posts
24:58
Speaker 1: for anybody who hasn't seen, they're fantastic. They explain Hirshbrun's
25:03
Speaker 1: disease so scinc succinctly, and there's just little little tips
25:12
Speaker 1: and helpful tricks. And I love there's a little glossary
25:16
Speaker 1: on there as well about you know, what's a stoma,
25:18
Speaker 1: what's Hirshbun's, what to expect from this, what to expect
25:21
Speaker 1: from that? Because there are so many things, and you've
25:24
Speaker 1: obviously recently gone through it, and a lot of people
25:26
Speaker 1: listening to this have gone through as well, where you
25:29
Speaker 1: are bombarded with all of these words that you may
25:33
Speaker 1: or may not have ever heard before, you know, I mean,
25:36
Speaker 1: ganglion cells and all of these things that you know
25:40
Speaker 1: when I do my research on this, And I'll be
25:44
Speaker 1: totally honest, I was before starting this podcast. I was
25:46
Speaker 1: quite ignorant to my own condition. It took me probably
25:51
Speaker 1: thirty years to start talking about it. Beforehand, it was
25:54
Speaker 1: just a part of my life, so I didn't know,
25:58
Speaker 1: I mean, men if any of the words really associate it,
26:03
Speaker 1: obviously knowing what stoma is and what Hirshmung's disease is roughly,
26:06
Speaker 1: but having all of these words bombarded to you, it's
26:10
Speaker 1: just so helpful sometimes because I think we all but
26:14
Speaker 1: it's eighty percent of the world are visual learners. So
26:19
Speaker 1: I think having a lot of words or written down
26:22
Speaker 1: on a bit of paper, or a lot of words
26:24
Speaker 1: said to you isn't necessarily always the best way of
26:27
Speaker 1: getting information across. So just having a real or a
26:31
Speaker 1: post or something that says this is this, and this
26:35
Speaker 1: is that and this is what I'm going through and
26:37
Speaker 1: et cetera, et cetera. That's why I love it as well.
26:42
Speaker 1: And something else you post on there is just what
26:45
Speaker 1: you do in terms of every day, everyday life and
26:48
Speaker 1: some of your hobbies as well, and one of them
26:50
Speaker 1: is wild swimming as well. How did you kind of
26:53
Speaker 1: get into that?
26:55
Speaker 2: Yeah? Do you know? I started while swimming during COVID.
26:58
Speaker 2: I had a friend that did it. I'd I was
27:01
Speaker 2: I wasn't really a massive outdoors girl, so I was
27:04
Speaker 2: a bit like, oh, I don't really want to do that,
27:06
Speaker 2: but totally fascinated at the same time. And I've always
27:09
Speaker 2: been a swimmer. So when I did it the first time,
27:11
Speaker 2: it was pouring with rain and I just the thrill
27:14
Speaker 2: from it is unbelievable. So I just I just carried on.
27:18
Speaker 2: I stopped when I got pregnant with Freddie and just
27:22
Speaker 2: on some advice that I hadn't as we know, you know,
27:24
Speaker 2: there's lots of medical advice out there, and I spoke
27:27
Speaker 2: to a Midby afterwards, who said you shouldn't stop swimming,
27:31
Speaker 2: you should do what you know, it's everyone's going to
27:33
Speaker 2: tell you something different that my professional opinion is it's fine.
27:36
Speaker 2: So I didn't swim while I was pregnant with Freddie,
27:40
Speaker 2: and then I started again after he was born, and yeah,
27:44
Speaker 2: it's just it's just just an exhilliary, exhilarating experience. I
27:48
Speaker 2: don't get it as much as i'd like, but it's
27:51
Speaker 2: definitely one of those things that I enjoy doing, and
27:55
Speaker 2: all of us are are just more than a small
27:58
Speaker 2: part of our story. So yeah, ready's got hirshbrongs. But
28:01
Speaker 2: you know, I also run my own business, I've got
28:05
Speaker 2: you know, I've got great friends. I I've got a
28:09
Speaker 2: beautiful family. I love wild swomen. I like reading like
28:12
Speaker 2: there's so much more to a person than just like
28:15
Speaker 2: a smallest part of the story. So although I'm sharing
28:18
Speaker 2: as much as I can about our experience right now
28:21
Speaker 2: because we're living in it and this is what we're
28:24
Speaker 2: going through on a day to day, I think it's just, yeah,
28:28
Speaker 2: what I've been posting is more of a whole experience
28:31
Speaker 2: of what's going on in life rather than just yeah,
28:34
Speaker 2: just one.
28:34
Speaker 1: Thing absolutely, and that's why I really really wanted you
28:37
Speaker 1: on the show as well, because there is it's not
28:40
Speaker 1: just this is a Hirshprung story end of that. There's
28:44
Speaker 1: so so much more as well. And to your point
28:47
Speaker 1: as well, you've recently done another reel where you talked
28:50
Speaker 1: about how to look after yourself because it's it's something
28:55
Speaker 1: that is so neglected, I think, and I think many
29:00
Speaker 1: many parents will have gone through this where you are
29:04
Speaker 1: so so focused on your child being well, doing the washouts,
29:10
Speaker 1: trying to get your head around the condition, the terminology
29:15
Speaker 1: and your routine, that you just completely forget that actually
29:19
Speaker 1: in order to do all of that stuff, you need
29:23
Speaker 1: to be looking after yourself as well, and there's beers
29:26
Speaker 1: as close to one hundred percent as possible.
29:28
Speaker 2: Yeah, totally, And I think it took me about three
29:34
Speaker 2: weeks after we came home before it really hit me
29:37
Speaker 2: that what we've been through and all the adrenaline that
29:39
Speaker 2: sort of carries you through, but also the responsibility because
29:43
Speaker 2: I talk about medical adamin so much, because there is
29:45
Speaker 2: just such an extra load of stuff you have to do,
29:49
Speaker 2: and right now, because we're settling in to Stona life, particularly,
29:53
Speaker 2: there's just so much stuff. I think I went for
29:56
Speaker 2: a walk through the day and I think I made
29:58
Speaker 2: five medical called related phone calls while I was on
30:02
Speaker 2: that walk, And that's just like an hour out of
30:04
Speaker 2: a day. And there's just so much paywork to feel
30:07
Speaker 2: in and care plans on all of that stuff. And
30:10
Speaker 2: I think there was like the end of the week
30:12
Speaker 2: and I was just really flagging and I actually thought
30:15
Speaker 2: I have not done anything for me for ages. So
30:19
Speaker 2: I was like, right, let's do some stuff for you.
30:21
Speaker 2: And then, like I said, I'm just living in the
30:24
Speaker 2: moment and posting about it as it happened. So then
30:27
Speaker 2: I just did a reel about it, made it real
30:29
Speaker 2: yesterday and posted it today that just said what I've
30:33
Speaker 2: been doing. And there's just no yeah, no strategy behind it.
30:37
Speaker 2: It's literally just what's going on in our life. Like
30:39
Speaker 2: I'll just post about that tomorrow. And what people ask
30:42
Speaker 2: is really helpful, Like people have asked questions that have
30:44
Speaker 2: been helpful for me to ask because I didn't know.
30:47
Speaker 2: And also every time I write something and someone clarifies
30:51
Speaker 2: something or I read it back and I'm like that
30:52
Speaker 2: doesn't make sense, it makes me learn to explain things
30:55
Speaker 2: better or more clearly. So the definitions. One was totally
30:59
Speaker 2: true because when you're in the hospital and you hear
31:01
Speaker 2: these words all the time, they just become part of
31:03
Speaker 2: your language and then you just start using them. And
31:07
Speaker 2: then I said something about Freddie being an ostimate once
31:09
Speaker 2: and someone said what does that mean? And I was like, oh,
31:12
Speaker 2: I haven't even explained that to somebody I'm talking to
31:14
Speaker 2: every day. So that's why I did the definitions. And
31:18
Speaker 2: I'm still learning loads more definitions every day. And like
31:22
Speaker 2: different products and stuff, and it's a real whirlwind the
31:26
Speaker 2: whole experience SOTMA, particularly because there is different products out
31:30
Speaker 2: there and you sort of get set up with your
31:32
Speaker 2: stuff and sent home, and then it's sort of off
31:36
Speaker 2: and down to you to find out what works. And
31:38
Speaker 2: that's really hard because you don't know what's out there.
31:40
Speaker 2: So social media is great for that because other people
31:42
Speaker 2: post what they use, and then you can sort of
31:44
Speaker 2: get samples and try them out and request stuff. That's
31:48
Speaker 2: really helpful. And yeah, and just tons of reading. I've
31:53
Speaker 2: read so many like medical journals. Don't really know what
31:58
Speaker 2: some of the stuff is, but it's really helpful for
32:01
Speaker 2: me just to have a bit a bigger understanding of
32:03
Speaker 2: what our experience is, and everybody tells you something different.
32:07
Speaker 2: One medical professional tie something different to another one. Even
32:10
Speaker 2: people who are at the you know, the top of
32:12
Speaker 2: their you know, sort of the field, will ti you
32:14
Speaker 2: two different things. And yeah, so just being able to
32:19
Speaker 2: like sit and process that and learn a bit more
32:21
Speaker 2: about it and talk about what other people's experiences are
32:24
Speaker 2: is super helpful. So hopefully for other people going through
32:28
Speaker 2: it at the earlier stage that they'll find my account
32:32
Speaker 2: and not feel so lonely about it because they'll they'll
32:36
Speaker 2: be seeing us living in the moment, like when he's
32:38
Speaker 2: months old, rather than me sort of telling the story
32:40
Speaker 2: but later on in his life.
32:43
Speaker 1: Absolutely, And again that was that was another reason I
32:46
Speaker 1: really wanted to on as well, because I get messages
32:49
Speaker 1: almost weekly from people who have either had just been
32:54
Speaker 1: diagnosed or maybe their child's sort of a month or
32:58
Speaker 1: somewhere between sort of six months a year, and they're saying, oh,
33:02
Speaker 1: I didn't know that this person had hirsprungs and that
33:04
Speaker 1: person had hersprungs. And I know I'm not. This isn't
33:07
Speaker 1: a medical podcast, and you know, I'm nowhere near qualified
33:11
Speaker 1: to talk about any kind of medical information. I just
33:14
Speaker 1: share experiences, but I think that type of media can
33:20
Speaker 1: be really beneficial, and I've had loads of messages, as
33:22
Speaker 1: I said, from people who do find it beneficial and
33:26
Speaker 1: people who will find your account and say, oh, actually,
33:29
Speaker 1: I didn't know that there was this type of ostereme
33:33
Speaker 1: bag or that's another thing that I'd imagine you found
33:37
Speaker 1: as well, in the fact that there are different types
33:40
Speaker 1: of osteme bags. I mean I had somebody on, well,
33:46
Speaker 1: this will be going out in October, so it'd been
33:48
Speaker 1: a few weeks ago, maybe a month ago, Tony Schneider
33:51
Speaker 1: from Ostigue who they make aste me bags. I had
33:55
Speaker 1: absolutely no idea they existed beforehand, and you.
33:59
Speaker 2: Don't know one someone tells you, two you see it anywhere,
34:03
Speaker 2: or three year research it yourself. So that's why social
34:06
Speaker 2: media is brilliant, because you can learn from other people
34:09
Speaker 2: about what they're using or what they're trying out. But also,
34:13
Speaker 2: like I had no idea what a stonma was, and
34:16
Speaker 2: before we had already surgery, I did start looking at
34:19
Speaker 2: accounts and following people just just in case, because we've
34:22
Speaker 2: been told it as a possibility. So I've quite relieved
34:25
Speaker 2: I've done that. When we heard that he was having
34:28
Speaker 2: one because I'd already seen what one looked like and
34:31
Speaker 2: I could show my husband and say, like, this is
34:33
Speaker 2: what a stonma looks like, because you just don't know.
34:35
Speaker 2: People ask us about like wires, and you know there's
34:40
Speaker 2: nobody knows, like you don't know it unless you've experienced it.
34:42
Speaker 2: And I posted on my story last week about what
34:45
Speaker 2: a stone bag looks like and what it does, and
34:48
Speaker 2: I had like twelve messages straight away within an hour,
34:51
Speaker 2: being like I had no idea that it sticks on
34:53
Speaker 2: your skin and this kind of thing. And that's super
34:57
Speaker 2: helpful to know that because what it opens up a discussion,
35:02
Speaker 2: and you know, you might see someone with wearing one
35:05
Speaker 2: and you see that picture, but you don't really know
35:07
Speaker 2: the ins and outs of like what it looks like,
35:08
Speaker 2: or the windows, or that you have to empty them
35:11
Speaker 2: and some don't need emptying, some just get changed. So
35:14
Speaker 2: like the whole of that is just a big learning curve.
35:18
Speaker 2: And also you don't always know what's an offer for you.
35:21
Speaker 2: So I did a real and posted it on TikTok
35:24
Speaker 2: as well about Ron McDonald house Charities, and that is
35:28
Speaker 2: my most reached TikTok because I posted about, like where
35:33
Speaker 2: do you stay when you're child's in hospital. And I
35:38
Speaker 2: think it's just really resonating with people because everyone knows McDonald's,
35:40
Speaker 2: they've all heard of it, they've all when they've been
35:43
Speaker 2: through the drive through. There's little penny boxes you can
35:46
Speaker 2: put your coins in, and then now it asks you
35:48
Speaker 2: on that digital screen do you want to round up
35:50
Speaker 2: and donate? And so many people replied and said I've
35:53
Speaker 2: always donated and never known why. Some people said, I'm
35:57
Speaker 2: donating now because I know what it means, and then
36:00
Speaker 2: other people said that it opened a conversation for them
36:03
Speaker 2: in terms of what would they do if their child
36:06
Speaker 2: was in hospital, like where would you stay? Like you
36:08
Speaker 2: just don't think of that. And I know not all
36:11
Speaker 2: hospitals have run on McDonald's house connected to them, but
36:14
Speaker 2: all the hateres and we've stayed there twice now and
36:19
Speaker 2: as many surgeries or long term longer than a night
36:23
Speaker 2: days that Freddie's going to have in hospital will be
36:25
Speaker 2: entitled to stay at mack House, which is just incredible
36:29
Speaker 2: that that's there. Because there's lots of research well there's
36:33
Speaker 2: not lots, but there's some research into parents and the
36:35
Speaker 2: cost of having a child that goes to hospital and
36:37
Speaker 2: it's something you just don't think about. So I had
36:41
Speaker 2: no idea when to posted that one that that was
36:43
Speaker 2: going to be something that touched people really importantly, but
36:46
Speaker 2: it really did. And I think it's just those basic
36:48
Speaker 2: things that you don't think about that you're living that
36:51
Speaker 2: people want to know about because they not experienced that before,
36:54
Speaker 2: They've not thought about it. It's not till your child's
36:56
Speaker 2: poorly you need to find out where you're going to stay,
36:59
Speaker 2: or you know what to pack to go to hospital,
37:02
Speaker 2: or what do you do when you get there, or
37:04
Speaker 2: who do you see. Yeah, you never know any of
37:07
Speaker 2: that stuff until until you're in it. So I'm a preparer.
37:11
Speaker 2: I like to know in advance. I want to know.
37:13
Speaker 2: I say this to the doctors. You can tell me anything, everything,
37:16
Speaker 2: all of it. That's what I need to know because
37:19
Speaker 2: that helps me think about like everything. I love reading
37:22
Speaker 2: journals and stuff like that. But but yeah, you don't
37:25
Speaker 2: know about it, so you're in it.
37:26
Speaker 1: Fantastic. Yeah, No, that's such an important point because I think,
37:29
Speaker 1: as again as we were mentioning off air, Ronald McDonald,
37:33
Speaker 1: is something I need to be talking more about on
37:35
Speaker 1: the podcast. It's so so important that I do miss
37:39
Speaker 1: it occasionally and I think, oh, I should have said that,
37:42
Speaker 1: and I should have done this, or I should have
37:44
Speaker 1: made a post about that or whatever. So I'm really
37:46
Speaker 1: really glad you brought that up because they are they
37:49
Speaker 1: are so so important, and I know that you've done
37:53
Speaker 1: a real as well, as we've spoke about about sometimes
37:58
Speaker 1: you're just having to sleep on so for or a
38:01
Speaker 1: floor like my mom did all those years ago, and
38:05
Speaker 1: having somewhere where you can actually get I mean, you're
38:08
Speaker 1: probably never going to sleep particularly well while whilst your
38:11
Speaker 1: child in hospital is still going to be things running
38:14
Speaker 1: through your head. But the fact that you can actually
38:16
Speaker 1: sleep into a bed that is going to be comfortable
38:20
Speaker 1: and you can actually get some decent sleep, and it's
38:21
Speaker 1: like what we talked about before about taking care of yourself. Yeah,
38:25
Speaker 1: you know that that becomes really important. Obviously wrong with
38:27
Speaker 1: Dodd's ours has become very very important as well, And.
38:32
Speaker 2: I think that's really important because you know, I all
38:36
Speaker 2: the nights I've been in the hospital with Freddie, I've
38:37
Speaker 2: sort away stayed with him in the same room, and
38:39
Speaker 2: we're you know, you're offered that as an experience, like
38:42
Speaker 2: to stay with your child, and for example, our local hospital. Yeah,
38:45
Speaker 2: I can stay with him. But what it means is
38:48
Speaker 2: for us is that my husband isn't traveling two and
38:50
Speaker 2: a half hours to come every day and he gets
38:53
Speaker 2: to stay nearby, that he gets to go somewhere. But
38:58
Speaker 2: even more importantly than that, they offer facilities that you
39:01
Speaker 2: wouldn't get, so washing machines and tumble dryers. They have
39:04
Speaker 2: a shop. It's not even a shop, you don't pay,
39:06
Speaker 2: just food that you can take like cereal and snack
39:10
Speaker 2: bars and stuff like that. There's paces to cook and
39:14
Speaker 2: and that's a really important thing as well. And if
39:16
Speaker 2: you're not entitled to stay that you don't qualify, you
39:19
Speaker 2: can still get a day pass and go and use
39:20
Speaker 2: their space. So having that option, it's just it's so
39:25
Speaker 2: much deeper than just somewhere to put your head. It's
39:27
Speaker 2: it's really about having somewhere to go with people that
39:31
Speaker 2: care where you, where you can be that isn't the hospital,
39:35
Speaker 2: but is just offering you that extra space. So they're
39:39
Speaker 2: just incredible.
39:41
Speaker 1: Definitely like that community feel that we talked about earlier, Yeah,
39:45
Speaker 1: and had gathering people who are going through sort of
39:46
Speaker 1: similar experiences to you at the time, can be can
39:51
Speaker 1: be so beneficial. And just just before we sort of
39:54
Speaker 1: wrap up here, I want to ask one more one
39:57
Speaker 1: more thing that you mentioned on your Instagram, something that
40:00
Speaker 1: I hadn't heard before about weekend leave. Do you like
40:04
Speaker 1: to talk a little bit about that.
40:06
Speaker 2: I hadn't heard of this either, And we were offered this,
40:09
Speaker 2: so right towards the end of Freddie's stay where he
40:11
Speaker 2: was doing better but still needed tests and replacement fluid
40:15
Speaker 2: because we had a lot, a lot of oustromy output,
40:19
Speaker 2: we were allowed to go home for a weekend for
40:21
Speaker 2: a trial. And you know, they said it's not something
40:23
Speaker 2: they normally do, but I've heard from other parents now
40:25
Speaker 2: they've been offered it as well, where we could go home,
40:29
Speaker 2: stay at home for a night or two nights, try,
40:33
Speaker 2: and then come back and at any point could return
40:35
Speaker 2: if he wasn't well, so we could go straight back
40:38
Speaker 2: and have our bed back and everything. But when we
40:41
Speaker 2: returned they did tests and things to see how we'd gone.
40:44
Speaker 2: And that was just so nice because we'd been in
40:49
Speaker 2: for a while, being able to come home and just
40:52
Speaker 2: be at home and have him back home and my
40:54
Speaker 2: dogs missed me, and just like all that stuff that
40:56
Speaker 2: you miss about being at home, having the opportunity to
41:00
Speaker 2: be at home and then knowing you've got the safety
41:03
Speaker 2: to go back just in case, and to go back
41:06
Speaker 2: and complete whatever treatment you need, or to be checked
41:09
Speaker 2: and looked after without being a full out patient. That
41:13
Speaker 2: was such a good experience and I'm so glad that
41:16
Speaker 2: we were offered that, because that day that we were
41:18
Speaker 2: offered it, I was really like fed off and I
41:20
Speaker 2: really wanted to come home. So to be offered that
41:22
Speaker 2: knowing we could come back was just amazing.
41:25
Speaker 1: It's brilliant, And thank you so much for highlighting that
41:27
Speaker 1: as well, because I think there's so many people that
41:32
Speaker 1: wouldn't know that would necessarily exist. But we also, I
41:36
Speaker 1: know you mentioned your dogs as well. We won't get
41:38
Speaker 1: on to dogs otherwise we will be here another hour
41:40
Speaker 1: and a half because I can talk dogs all day,
41:45
Speaker 1: But just very quickly, what dogs do you have?
41:47
Speaker 2: I have a ten year old jat Russell Cross corgy.
41:52
Speaker 2: She's called Mazy, and I have a big on. She's
41:55
Speaker 2: nearly three, and she's wild, fantasting.
41:59
Speaker 1: I think all beagles are, are they?
42:01
Speaker 2: Yeah, apparently they calmed down around this aide, but we
42:04
Speaker 2: yet to see that. But she's amazing.
42:06
Speaker 1: Yeah, I don't think I've seen a single beagle that
42:08
Speaker 1: has ever calmed down at any time, so that I
42:11
Speaker 1: know a few.
42:13
Speaker 2: Yeah, we love them both.
42:15
Speaker 1: They're great, great dogs, fantastic and just very quickly in
42:20
Speaker 1: terms of the future for you, Freddie, if your family,
42:25
Speaker 1: what do you see in the future, Well, we know
42:28
Speaker 1: that he'll have.
42:28
Speaker 2: Probably at least two more surgeries whatever reconstruction is tried.
42:33
Speaker 2: And then I asked me a reversal. So even if
42:37
Speaker 2: he says and has the stonema forever, he'll need the
42:41
Speaker 2: two stoners taking out at some point and it's turning
42:44
Speaker 2: into a permanent solution if that's the way we go.
42:48
Speaker 2: If we go ahead of the reconstruction, it'll just be see.
42:51
Speaker 2: We know, we saw a pediatric pediatrician in the day
42:54
Speaker 2: who said it's better to go for one operation when
42:57
Speaker 2: they're well and bigger and get it right than have
42:59
Speaker 2: to do lots and lots, So you know, that's what
43:03
Speaker 2: we've heard most recently. But yeah, well, we're going to
43:06
Speaker 2: see what happens, go with the flow there, and then
43:09
Speaker 2: I think for now I'm just going to keep sharing
43:10
Speaker 2: about what the experience looks like and what happens and
43:15
Speaker 2: all of the challenges you encounter as you do. But
43:19
Speaker 2: but yeah, that's that's as far as I'm looking forward
43:21
Speaker 2: at the moment, I think just settling into this life,
43:24
Speaker 2: watching them grow and be happy and thrive, and then
43:28
Speaker 2: make a decision when we get there, which is very
43:30
Speaker 2: unlikely because I like plans, but maybe I won't go
43:33
Speaker 2: with that plan.
43:35
Speaker 1: Sounds fantastic And just also, very quickly, where can people
43:39
Speaker 1: keep up with you? Keep up with Freddie's story?
43:42
Speaker 2: Yeah, so I'm on Instagram at Live with Georgina, so
43:47
Speaker 2: you can search for me on there and you'll find everything.
43:49
Speaker 2: Same on TikTok as well. And yeah, I hang out
43:55
Speaker 2: in all the Hirshebrongs groups on Facebook too and are
43:57
Speaker 2: not in the stonewalls now as well, like babies with
44:01
Speaker 2: is one of my favorite hashtags at the moment, so
44:03
Speaker 2: I hang out there as well, so you can find
44:05
Speaker 2: me around.
44:07
Speaker 1: Fantastic. Well, thank you ever so much for joining me,
44:10
Speaker 1: and I wish you and Freddie and the rest of
44:12
Speaker 1: your family very successful future. Thank you so much for
44:17
Speaker 1: having us on my pleasure. Thank you for listening to
44:22
Speaker 1: the podcast. Find us on Instagram, Tom's Underscore Hirshbrung's Underscore
44:27
Speaker 1: podcast Listen to previous episodes on Spotify by searching Tom's
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