Latest / Tom's Hirschsprung's Podcast / Episode 78 - With Taylor Lammonds

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Episode 78 - With Taylor Lammonds · Tom's Hirschsprung's Podcast

• 0:05
  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 seventy eight of Tom's Hirshprung's Podcast. I am delighted
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  Speaker 1: to be joined by Taylor this afternoon or this morning
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  Speaker 1: where you are, and we are going to discuss your
• 0:58
  Speaker 1: son Bowen and we are going to discuss us his
• 1:01
  Speaker 1: diagnosis and how he is now with hirsh proNT disease.
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  Speaker 1: And welcome to the podcast, Taylor.
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  Speaker 2: Yes, thank you so much. I am super happy to
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  Speaker 2: be here and happy to share my story. Hopefully I
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  Speaker 2: can get it out in a concise and manner that
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  Speaker 2: makes sense. But honestly, a lot of these I feel
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  Speaker 2: like roads to these diagnoses don't make sense.
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  Speaker 1: So I've never seen a straightforward turned off to hospital
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  Speaker 1: diagnosed with Hirschbrungs and then see you go home, never
• 1:32
  Speaker 1: need to visit a hospital again. It'd be great if
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  Speaker 1: it was. Yeah, yeah, I've never seen it. And we're
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  Speaker 1: seventy eight episodes in and I don't think we're going
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  Speaker 1: to see it today.
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  Speaker 2: Are we no, no, not really.
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  Speaker 1: So with that being said, I guess we'll start sort
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  Speaker 1: of from the beginning. And I know you've shared your
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  Speaker 1: story on TikTok in of eight different parts and they're
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  Speaker 1: really really good videos, very informative as well, and we'll
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  Speaker 1: get to those bits in a moment, but I guess, yeah,
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  Speaker 1: if you'd like to start from the beginning.
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  Speaker 2: Okay, yes, I will do that. I yeah, I shared
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  Speaker 2: those TikTok videos when I was still everything was just
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  Speaker 2: as it was happening. So I'm hoping by now maybe
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  Speaker 2: I've gotten my story a little bit more condensed, but
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  Speaker 2: we'll see. So I feel like whenever I was in
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  Speaker 2: the hospital and they if you've ever been in the
• 2:24
  Speaker 2: hospital with a baby and there's something wrong with them,
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  Speaker 2: they're always like, how is your pregnancy? Was it normal?
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  Speaker 2: Did anything weird happen? So I'll just start there briefly,
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  Speaker 2: pregnancy was normal. I had a little bit of high
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  Speaker 2: blood pressure problems, and that's why I went to get
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  Speaker 2: induced on the day that I did, because my blood
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  Speaker 2: pressure was kind of high. So they were like, let's
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  Speaker 2: just go ahead and get you in. And it was
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  Speaker 2: only one week before I was supposed to go in anyways.
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  Speaker 2: So I was like, okay, well, let's just do it.
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  Speaker 2: So we go in the labors. Honestly, it was easy.
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  Speaker 2: I've never had a baby before, by the way, this
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  Speaker 2: was my first, so I was terrified. I don't know
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  Speaker 2: if I just got lucky, but for me, it was
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  Speaker 2: not too terrible. So he came out, he was great.
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  Speaker 2: We were in the hospital for a couple of days,
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  Speaker 2: and then you know, on the day we're supposed to
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  Speaker 2: go home, the pediatrician comes in. He looks at him,
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  Speaker 2: he says, he looks great. He had passed. This is
• 3:16
  Speaker 2: important for a Hirschbrunks podcast. He passed his first poop
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  Speaker 2: and there was a lot of it. It was that maconium,
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  Speaker 2: I think it's how you say it. He passed it,
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  Speaker 2: and we were like, okay. The weird thing now, in hindsight,
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  Speaker 2: is that he wasn't eating a lot when we were there,
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  Speaker 2: Like he just didn't seem interested. But they were like,
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  Speaker 2: you know, he's brand new, he's been through a lot.
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  Speaker 2: He's probably just not very hungry. And I was like, okay,
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  Speaker 2: I've never had a baby before, I'll trust you. But
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  Speaker 2: when the pediatrician released him, this is the part that
• 3:46
  Speaker 2: kind of. It's the crazy one of the craziest parts
• 3:49
  Speaker 2: about our story because it's just I don't even know
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  Speaker 2: how it happened. There was a little green spot on
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  Speaker 2: a blanket he was laying on when the pediatrician was
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  Speaker 2: looking at him, and the spot was I don't know
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  Speaker 2: what it was. It wasn't like a part of the blanket.
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  Speaker 2: It was just spite. And the doctor was like, is
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  Speaker 2: that spit up? And I was like, no, it's not
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  Speaker 2: spit up, and he said, okay, good. He was like,
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  Speaker 2: if you ever see spit up green, spit up that color,
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  Speaker 2: you need to bring him back immediately. And I was like, okay.
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  Speaker 2: He was like, you know, it could be I think
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  Speaker 2: it's called like intestinal malrotation or some sort of blockage
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  Speaker 2: that would mean that you need like media surgery. But
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  Speaker 2: I obviously was like, well that's that's not gonna be
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  Speaker 2: a problem. But okay, anyways, we get released, we go home.
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  Speaker 2: We're home. Like I said, he hadn't eaten much, so
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  Speaker 2: when we got home, I had pumped some colostrum, and colostrum,
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  Speaker 2: if you don't know, it's just like the very beginning
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  Speaker 2: of your breast milk, and it's super like yellow, and
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  Speaker 2: so we fed it to him in the tiniest syringe.
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  Speaker 2: I'm talking one millimeter of milk. We fed it to
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  Speaker 2: him and then he spit it up and I was like, hmmm.
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  Speaker 2: We waxed this spit up with like a white paper
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  Speaker 2: towel and we saw a little green speck and I
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  Speaker 2: was like, oh, I was like, well, you know, the
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  Speaker 2: milk's yellow, it's probably just that. So my husband and
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  Speaker 2: I were kind of like, this is like, one are
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  Speaker 2: the odds that we're gonna see the green spit up?
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  Speaker 2: So also, sorry if you hear him screaming in the background.
• 5:19
  Speaker 2: Baby left his baby's left to scream. Uh So where
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  Speaker 2: we take him into our living room. We bundle him
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  Speaker 2: up in his swaddle. We're just laying there and he
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  Speaker 2: spits up again, and he's wearing like a white outfit,
• 5:30
  Speaker 2: and this spit up is clearly green. So we were like,
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  Speaker 2: uh oh, what are the odds? So we decide at
• 5:38
  Speaker 2: first we're like this, We're just this, We're just going crazy,
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  Speaker 2: like we're seeing stuff. We're new parents. But we keep
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  Speaker 2: we kind of google it for a second, and then
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  Speaker 2: we're like, you know what, let's just take him back.
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  Speaker 2: We literally we'd been home for maybe thirty minutes, like
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  Speaker 2: literally thirty minutes, and so I was like, we just left,
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  Speaker 2: like the mother baby flo at the hospital. Surely they'll
• 6:01
  Speaker 2: let us just come back up there. We just left.
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  Speaker 2: So we're on our way and we call them and
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  Speaker 2: I was like, hey, we just left, We literally just
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  Speaker 2: got discharged. Can we please come back to the mother
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  Speaker 2: baby floor And they're like, no, you're gonna have to
• 6:13
  Speaker 2: go to the emergency room and I was like, oh,
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  Speaker 2: in the emergency room is just a regular emergency room
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  Speaker 2: for adults. There's a children's hospital. So I live in Wilmington,
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  Speaker 2: North Carolina, and there is a children's hospital, but they
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  Speaker 2: don't have a children's emergency room. So we take our
• 6:30
  Speaker 2: two day old to the emergency room, which the emergency
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  Speaker 2: room workers were freaked out because they don't get too
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  Speaker 2: many two day olds because they usually go to the
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  Speaker 2: Nike you they don't make it out and then come
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  Speaker 2: back that quickly. So they get us back pretty much immediately,
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  Speaker 2: thank goodness. They check his vitals, they check his temperature,
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  Speaker 2: and he's pretty cold, and I don't know if that's
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  Speaker 2: because he was a brand new baby and he hadn't
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  Speaker 2: been swallowed up, so he was colder than they wanted.
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  Speaker 2: And then they checked his glue coat levels, and since
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  Speaker 2: it was just a regular emergency room, his glucose levels
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  Speaker 2: were normal for a baby, but ab normal for an adult.
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  Speaker 2: So they freaked out because I guess they didn't know
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  Speaker 2: the difference, and they freaked us out. So they send
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  Speaker 2: us right back to a room, throw them in a
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  Speaker 2: little incubator thing, and immediately start trying to prick him
• 7:19
  Speaker 2: to take his blood. Meanwhile, I have just had a baby.
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  Speaker 2: I'm super hormonal, obviously. I mean, this is a little TMI,
• 7:26
  Speaker 2: but if you're a mom, this is what happens. I
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  Speaker 2: had on a diaper, just like my new baby, and
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  Speaker 2: I was bleeding. I had nothing. I could barely walk.
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  Speaker 2: I was supposed to be wheeling in a wheelchair, but
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  Speaker 2: it didn't have one, so I was just waddling through
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  Speaker 2: the emergency room.
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  Speaker 1: That's tough. That's tough.
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  Speaker 2: Yeah. Yeah. And at this point I was like kind
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  Speaker 2: of crying, but I also was kind of dissociating because
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  Speaker 2: I was like, what is going on? So we're sitting
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  Speaker 2: in the er room, I'm crying, my husband's watching whatever
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  Speaker 2: they're doing. I'm like, I don't even I can't do anything.
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  Speaker 2: I'm not a doctor. I don't know. So they'd take
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  Speaker 2: an X ray up his abdomen because they think something's
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  Speaker 2: going on in there because of the green throw up,
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  Speaker 2: So they take an X ray. They bring in a
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  Speaker 2: bunch of people in there. I guess they bring in
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  Speaker 2: the people who they think are going to be best
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  Speaker 2: to work on a tiny little baby, because they want
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  Speaker 2: to take his blood too, because they're gonna test it
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  Speaker 2: for infections and all sorts of stuff. And while they
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  Speaker 2: are I guess some of the people didn't know why
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  Speaker 2: we were there. And while we were in there, I
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  Speaker 2: didn't see this. My husband saw it. He threw up again.
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  Speaker 2: This time it was like a hunter green and a
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  Speaker 2: lot of it, and so the nurse was like, just
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  Speaker 2: a question, why did you bring him in? And I
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  Speaker 2: was like, he had some green spit up and she's like, okay, okay,
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  Speaker 2: that makes sense.
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  Speaker 1: Yeah.
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  Speaker 2: So I think at that point we got the X
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  Speaker 2: ray back. The doctor was like, I don't like the
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  Speaker 2: way it looks, and I guess it just looked really distended.
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  Speaker 2: I don't know. So they decided they were gonna take
• 8:59
  Speaker 2: us to do I don't know what specifically, it's called
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  Speaker 2: it was like a contrast X ray where they were
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  Speaker 2: going to have him drink the like white chalky stuff
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  Speaker 2: from the top and then they were gonna put the
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  Speaker 2: contrast also of his booty through the bottom to make
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  Speaker 2: sure that there was no blockage throughout. So we go
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  Speaker 2: with them in there. They had called the pediatric surgeon
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  Speaker 2: in at that point to come take a look at
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  Speaker 2: his X ray to see if there was a blockage
• 9:25
  Speaker 2: or some sort of rotation in his intestines, because if
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  Speaker 2: there was, he was gonna have to go in for
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  Speaker 2: emergency surgery like immediately. So we do that. They didn't
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  Speaker 2: see anything. He was like, it looks fine, Everything looks fine.
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  Speaker 2: But they were at that point I think they were
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  Speaker 2: kind of like, okay, but what's going on. I think
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  Speaker 2: they thought there was gonna be a blockage. Not that
• 9:45
  Speaker 2: we hoped there was gonna be one, but at least
• 9:47
  Speaker 2: at that point we would have had an answer. So anyways,
• 9:51
  Speaker 2: we go back to the room. At this point, they're like, okay,
• 9:53
  Speaker 2: it's probably some sort of infection. They're trying to take
• 9:56
  Speaker 2: his blood, they're trying to put an IV in him,
• 9:59
  Speaker 2: but he's so tiny that they blow almost every available
• 10:04
  Speaker 2: vein that they can find in the emergency room, they
• 10:08
  Speaker 2: finally bring down like the pick you nurses, so the
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  Speaker 2: pediatric ICU nurses to do it. They find one last
• 10:17
  Speaker 2: usable vein, thank goodness, and he's a baby and it
• 10:20
  Speaker 2: was in the crook of his arm. So my husband
• 10:22
  Speaker 2: was like, that's not gonna last long. So finally we
• 10:28
  Speaker 2: get upstairs to our room because obviously we get admitted
• 10:31
  Speaker 2: because they need to figure out what's going on. So
• 10:34
  Speaker 2: we get upstairs to our room and honestly, he's not
• 10:36
  Speaker 2: acting sick. So it's kind of weird because he's not
• 10:40
  Speaker 2: acting like he's sick. He's just thrown up this weird color.
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  Speaker 2: We'll get up to our room. I don't know if
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  Speaker 2: you've ever been, which I'm sure you have been, but
• 10:48
  Speaker 2: if nod, yeah, in a pediatric like hospital room, I
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  Speaker 2: don't know what I expect. I see TV shows. I
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  Speaker 2: expect it to be like it's a hospital room, but
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  Speaker 2: you think it's gonna be more cozy. It's supersterile. I
• 11:01
  Speaker 2: get in there, they're playing this stupid TV and it's
• 11:05
  Speaker 2: got this music on it. And the only way I
• 11:07
  Speaker 2: can describe it now is at this funeral music, and
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  Speaker 2: I'm like, this is terrible, Like what is this? So
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  Speaker 2: we're sitting in there. My parents are in town because
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  Speaker 2: I've just had a baby. My mom is freaking out
• 11:20
  Speaker 2: because you know, everything that's going on, and this is
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  Speaker 2: like late at night by this point, it's probably like
• 11:25
  Speaker 2: ten o'clock at night. The doctors come in, so there's
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  Speaker 2: a nurse practitioner I think, and then a doctor. They
• 11:32
  Speaker 2: come in and they're like, we obviously don't know what's
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  Speaker 2: going on. We're gonna test for like all these different infections.
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  Speaker 2: So they had got a bunch of his blood, so
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  Speaker 2: they had already started running the blood to do whatever
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  Speaker 2: they're gonna do, and they said that to make sure
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  Speaker 2: that absolutely no pathogens grew, we were at least gonna
• 11:51
  Speaker 2: be there for three days no matter what. So we
• 11:53
  Speaker 2: were like okay, but they said that they needed to
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  Speaker 2: do a spinal tab as well to check for meningitis,
• 12:03
  Speaker 2: like if he had something that had gotten into his spine,
• 12:05
  Speaker 2: which the doctor when he was talking about that, he
• 12:08
  Speaker 2: had to like sit down, and I was like, okay,
• 12:10
  Speaker 2: when a doctor sits down, it's no good. But honestly,
• 12:14
  Speaker 2: the spinal tap as scary as it sounds it's sound
• 12:16
  Speaker 2: of like. The main complications were either infection or bleeding,
• 12:20
  Speaker 2: which when you're in the hospital and infection is risk
• 12:23
  Speaker 2: in every single little thing that they do. So they
• 12:27
  Speaker 2: took him, they did the final tap, and they told
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  Speaker 2: us that they would get results back at certain time frames.
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  Speaker 2: They would get a result back at twenty four hours
• 12:36
  Speaker 2: blah blah blah blah blah blah, and so we were like, okay.
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  Speaker 2: They were like for now, we're gonna be here for
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  Speaker 2: at least three days. He was on ivy antibiotics just
• 12:45
  Speaker 2: in case, but the problem was too he had start
• 12:48
  Speaker 2: He started antibiotics in the emergency room. So they said
• 12:51
  Speaker 2: the antibiotics that he got on in the emergency room
• 12:54
  Speaker 2: could affect the results of the tests. So I'm like, okay,
• 12:59
  Speaker 2: great whatever. I'm like, I don't even know at this point.
• 13:03
  Speaker 2: So that point, we're in the hospital for at least
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  Speaker 2: three days. I'm exhausted just having had a baby. I
• 13:09
  Speaker 2: wanted to stay with him, but my family was like, no,
• 13:12
  Speaker 2: you need to go home, and my husband stayed at
• 13:15
  Speaker 2: the hospital with him that night. So I go home,
• 13:19
  Speaker 2: and this was probably it's kind of crazy when you
• 13:21
  Speaker 2: have a baby that's like sick, like at the very
• 13:24
  Speaker 2: beginning that you're not expecting because it's like what should
• 13:28
  Speaker 2: be the best part of your life, which still is,
• 13:30
  Speaker 2: is also the worst. So I go home to my
• 13:33
  Speaker 2: house by myself. My mom's there and my stepdad are
• 13:36
  Speaker 2: there and my dog. But I go home, no husband,
• 13:38
  Speaker 2: no baby. I'm about to get in my bed, and
• 13:40
  Speaker 2: I'm like, this is terrible, Like I'm not supposed to
• 13:44
  Speaker 2: be here after just having a baby alone. So I cry.
• 13:48
  Speaker 2: Obviously I'm not much of a crier, but after you've
• 13:52
  Speaker 2: just had a baby, I don't know. I don't know
• 13:54
  Speaker 2: what happens. So go back to the hospital the next morning.
• 14:02
  Speaker 2: We'd got at some point that day, we got like
• 14:05
  Speaker 2: a twenty four hour response on our spinal tap test
• 14:09
  Speaker 2: and it came back that he had maybe a trace
• 14:12
  Speaker 2: of some sort of bacteria. It was like, I can't remember,
• 14:17
  Speaker 2: it was some sort of strip strip pneumonia or something
• 14:21
  Speaker 2: like that, so very weird. But they were like, we
• 14:24
  Speaker 2: can't say for sure if he has it. He might
• 14:26
  Speaker 2: actually have it, he might not, but we're gonna treat
• 14:28
  Speaker 2: it like it's meningitis because if we don't, then it
• 14:30
  Speaker 2: could get to his brain. And be terrible. So they
• 14:33
  Speaker 2: told us you're gonna be in the hospital for two weeks.
• 14:35
  Speaker 2: He's gonna be in ivy antibiotics the whole time. And
• 14:38
  Speaker 2: I was like, cool. So you're probably thinking at this point,
• 14:41
  Speaker 2: what does this have to do with Hershpringk's disease. I
• 14:44
  Speaker 2: don't know, but now I still that that whole part
• 14:49
  Speaker 2: of the story is still confusing. But we were in the
• 14:50
  Speaker 2: hospital for two weeks. While we were in the hospital,
• 14:54
  Speaker 2: his abdomen was swollen and distended, and I'm sure to
• 15:00
  Speaker 2: Hirshrunks people have had the swollen abdomen issue, and it
• 15:04
  Speaker 2: was really hard and it was just getting bigger and bigger.
• 15:09
  Speaker 2: And they did X rays every single day on his
• 15:11
  Speaker 2: abdomen and they did and I still don't understand. They
• 15:16
  Speaker 2: didn't see anything other than gas. They were like, there's
• 15:18
  Speaker 2: just gas in there, and I'm like, well, how do
• 15:21
  Speaker 2: we get the gas out? And then nobody was giving
• 15:24
  Speaker 2: me an answer. And he wasn't pooping a lot, but
• 15:27
  Speaker 2: what they thought had happened was that he got something
• 15:29
  Speaker 2: called an ilius. I don't know, and I'm not a doctor,
• 15:33
  Speaker 2: but apparently if you get an infection like what they
• 15:36
  Speaker 2: think he had. It can cause something called an ilius,
• 15:39
  Speaker 2: which is where your intestines basically stopped working or they
• 15:43
  Speaker 2: slowed down significantly. So they were thinking that things were
• 15:47
  Speaker 2: just stopped in his intestines and weren't able to come
• 15:50
  Speaker 2: out because of an ilius, because of the infection, which
• 15:53
  Speaker 2: as a logical person, that makes sense. You know, he
• 15:56
  Speaker 2: didn't have the I would say the number one hirshprings,
• 16:00
  Speaker 2: which is no first poop he pooped. So anyways, we're there,
• 16:06
  Speaker 2: they're monitoring it. They think he has this ilius. He
• 16:09
  Speaker 2: starts eating, We're doing okay. The two weeks were terrible.
• 16:13
  Speaker 2: His ivy's busted. He had to end up getting a
• 16:16
  Speaker 2: central line put in through his whatever artery it is
• 16:19
  Speaker 2: through your leg. It was a whole mess. Well, finally
• 16:23
  Speaker 2: we're there on the last day, they're like, we're ready
• 16:25
  Speaker 2: to get discharged his ivy, his antibiotics are done. This
• 16:29
  Speaker 2: part irritated me to know him. They come in and
• 16:33
  Speaker 2: his avenue is still swollen. But we haven't gotten any
• 16:35
  Speaker 2: answers the whole time. And then we're like, I think
• 16:39
  Speaker 2: we're gonna call in our gi doctor. I'm like, we've
• 16:43
  Speaker 2: been here for two weeks. Two weeks. You've sent every
• 16:48
  Speaker 2: doctor in here infectious disease, surgery, all sorts of people,
• 16:53
  Speaker 2: but he and he's been having stomach issues the whole time,
• 16:57
  Speaker 2: and they just now say maybe we should call in
• 16:59
  Speaker 2: a g and I was like, yeah, no. I was like,
• 17:04
  Speaker 2: you're not going to be able to help us anymore.
• 17:06
  Speaker 2: We'd already considered moving him to another hospital at this
• 17:09
  Speaker 2: point anyways, because I live in North Carolina and we
• 17:12
  Speaker 2: have two really good children's hospitals in other parts of
• 17:16
  Speaker 2: the state, and so we consider moving him. But since
• 17:20
  Speaker 2: we thought we knew what was going on, I was like, well,
• 17:22
  Speaker 2: we could just leave him. He's on these antibiotics. But
• 17:25
  Speaker 2: at that point I was like, I'm not staying here anymore.
• 17:28
  Speaker 2: And they were like, okay, well we can send you
• 17:30
  Speaker 2: to a GI outpatient. I was like perfect. So we
• 17:33
  Speaker 2: come on from the hospital, we go to GI outpatient.
• 17:36
  Speaker 2: I tell him everything that happened. He notices the distended abdomen,
• 17:40
  Speaker 2: but he's eating and he was gaining weight, so he
• 17:42
  Speaker 2: was like, let's just watch it. It could be an allergy,
• 17:45
  Speaker 2: like a milk allergy or something, because I was breastfeeding
• 17:47
  Speaker 2: him and I was eating a lot of dairy because
• 17:49
  Speaker 2: I was at the hospital just snacking all day long.
• 17:54
  Speaker 2: So anyways, we go to outpatient GI on a Thursday.
• 17:58
  Speaker 2: That next Sunday only been a few days. His belly
• 18:02
  Speaker 2: was getting bigger. He was starting to act uncomfortable and
• 18:06
  Speaker 2: not wanting to eat really at all, and we thought
• 18:09
  Speaker 2: it was still just gas, and so his doctor said
• 18:11
  Speaker 2: we could bring him in and they could do like
• 18:13
  Speaker 2: a little tube up there up it's a little booty
• 18:16
  Speaker 2: to release the gas. And so I called him. I
• 18:17
  Speaker 2: was say, hey, can we come in just to do
• 18:19
  Speaker 2: that gas tube? And at this point, I guess we
• 18:23
  Speaker 2: saw him every day and I didn't realize how distended
• 18:26
  Speaker 2: his abdomen was, and I was the first time mom.
• 18:29
  Speaker 2: I just I don't know what a baby belly's supposed
• 18:31
  Speaker 2: to look like. Now I do, but I didn't then.
• 18:35
  Speaker 2: And he was also pooping like maybe once a day,
• 18:38
  Speaker 2: which now I know that your newborn should be pooping
• 18:40
  Speaker 2: a lot more than that. So we take him back
• 18:44
  Speaker 2: to the GI, they weigh him, they do all that.
• 18:46
  Speaker 2: When we first get there, he had lost weight, a
• 18:48
  Speaker 2: good bit of weight in just like four days. So
• 18:51
  Speaker 2: that was concerning and I knew that I was like Okay,
• 18:53
  Speaker 2: that doesn't sound good. The GUI takes one look at
• 18:56
  Speaker 2: him with his belly and he goes, you need to
• 18:58
  Speaker 2: go back to the mercy room right now. And I
• 19:00
  Speaker 2: was like, oh. He was like his adaman's so distended.
• 19:04
  Speaker 2: I think it's probably pushing on his lungs. I'm worried
• 19:06
  Speaker 2: about his breathing. And I was like, Lord, have mercy.
• 19:10
  Speaker 2: So at this point I was like, okay, So we'd
• 19:14
  Speaker 2: got in the car. We drove back to the hospital.
• 19:17
  Speaker 2: We went back to the lovely emergency room, and he
• 19:22
  Speaker 2: told us that he had called the emergency room and
• 19:24
  Speaker 2: that they were expecting us because of how worried he was.
• 19:27
  Speaker 2: Because these systems like worked together. You know, his doctor's
• 19:31
  Speaker 2: office works with the hospital. So he said he had
• 19:32
  Speaker 2: called and they were supposed to take us back like
• 19:34
  Speaker 2: right then. That didn't happen. I don't know how emergency
• 19:37
  Speaker 2: rooms are in the UK, but in America not great.
• 19:41
  Speaker 2: I'm sure everybody can talk crab about the American health
• 19:43
  Speaker 2: care system. It's a joke and it's true. It was terrible.
• 19:48
  Speaker 2: We had old lady volunteers. Sorry that didn't want me
• 19:52
  Speaker 2: to call her an old lady, but she was. She
• 19:53
  Speaker 2: was an older lady volunteer that was having to advocate
• 19:56
  Speaker 2: for us to get us into the emergency room, like
• 19:58
  Speaker 2: into a room. It was crazy. So we're there, We're
• 20:02
  Speaker 2: in the waiting room for hours. I'm calling his GI.
• 20:05
  Speaker 2: I'm like, hello, are they gonna let us in or know?
• 20:08
  Speaker 2: Finally I think the GI got ahold of them. They
• 20:10
  Speaker 2: took us back. But at this point I didn't want
• 20:14
  Speaker 2: the emergency room staff touching him, basically because the last
• 20:18
  Speaker 2: time they blew all of his veins and I was like,
• 20:20
  Speaker 2: who knows how long we're gonna be here, So I
• 20:22
  Speaker 2: told them, I was like, I don't want y'all touching him.
• 20:24
  Speaker 2: I was like, I just want you to admit us
• 20:26
  Speaker 2: into a room upstairs. And they were like okay, and
• 20:30
  Speaker 2: the doctor like I told him his whole history, and
• 20:32
  Speaker 2: the doctor was like, yeah, we're just gonna wait till
• 20:34
  Speaker 2: the room's available and we'll send you up there. Because
• 20:38
  Speaker 2: he still wasn't acting sick like you would think that
• 20:41
  Speaker 2: he would be acting like just I don't know, like
• 20:44
  Speaker 2: he felt bad. He really didn't, like, he wasn't eating
• 20:47
  Speaker 2: a whole lot, but he was still new baby. When
• 20:50
  Speaker 2: we were in the hospital the first time, they had
• 20:52
  Speaker 2: made him go without food for a little bit to
• 20:54
  Speaker 2: help his bowels rest. So we're in the er. They
• 20:59
  Speaker 2: do come and put an and him. I told the nurses.
• 21:02
  Speaker 2: I was like, if you can't find it, don't even
• 21:03
  Speaker 2: touch him, don't even try. They were able to get
• 21:06
  Speaker 2: it in, so that was a plus. We wait in
• 21:08
  Speaker 2: the emergency room for about six hours just sitting before
• 21:12
  Speaker 2: we can get upstairs to a room because they were
• 21:15
  Speaker 2: cleaning it apparently, and it took that long. So we
• 21:19
  Speaker 2: get upstairs. It's late at night again. A doctor that
• 21:22
  Speaker 2: we had seen many many times in our two weeks
• 21:24
  Speaker 2: stay comes in and I basically asked her. I'm like, okay,
• 21:27
  Speaker 2: what do y'all think is wrong? Like what is it?
• 21:30
  Speaker 2: And she was like, well, we're going to test him
• 21:32
  Speaker 2: for this thing called Hirshbrung's disease. And I was like okay.
• 21:37
  Speaker 2: She was like, we really don't think he has it,
• 21:39
  Speaker 2: but we're just going to do it just because, and
• 21:42
  Speaker 2: then she goes, we also think he could have cystic fibrosis,
• 21:45
  Speaker 2: so we may have to send you to it was
• 21:48
  Speaker 2: another hospital in the area for a test, and I
• 21:51
  Speaker 2: was like okay. So the doctors the whole time they
• 21:55
  Speaker 2: were like, we're going to test him for Hirshbrungs but
• 21:58
  Speaker 2: all this like we don't think he has We just
• 22:00
  Speaker 2: don't think he has it, but we're gonna do it
• 22:02
  Speaker 2: just because. So the doctor comes in that night, the surgeon,
• 22:06
  Speaker 2: and he is like, let's just try and relieve his
• 22:09
  Speaker 2: stomach to you know, gets to get the distention down.
• 22:15
  Speaker 2: So anyways, they come in, they do the if you
• 22:18
  Speaker 2: are Hirshprung's parent or person, they do the irrigation, the
• 22:23
  Speaker 2: tube irrigation and he my son was filled with poop
• 22:29
  Speaker 2: absolutely failed. And now when I think about it, I
• 22:32
  Speaker 2: don't know how they couldn't see that on the x
• 22:34
  Speaker 2: ray because he's gotten x rays. Sense and his surgeon,
• 22:38
  Speaker 2: who we finally go to eventually like can see even
• 22:41
  Speaker 2: just a little bit of poop on the x ray,
• 22:44
  Speaker 2: Like you be like, there's poop in there. So I
• 22:46
  Speaker 2: don't know how they didn't see that. His appmen was
• 22:47
  Speaker 2: filled with poop. But my dude was filled with poop.
• 22:52
  Speaker 2: And so they clean him out and he seems to
• 22:56
  Speaker 2: feel better already, and that next day come in to
• 23:00
  Speaker 2: do the biopsy. So for the biopsy, if any parents
• 23:04
  Speaker 2: are listening and your kid's about to have a biopsy
• 23:06
  Speaker 2: or you just want to know. It's like this little
• 23:08
  Speaker 2: metal it's not a gun, but it's like a little
• 23:11
  Speaker 2: metal gun looking thing, and it's like a tube and
• 23:13
  Speaker 2: they stick it up their little booty and there's like
• 23:16
  Speaker 2: it just cuts off a piece of the inside of
• 23:19
  Speaker 2: their colon essentially, And he didn't seem to mind it
• 23:22
  Speaker 2: at all. He didn't cry. They did it right at
• 23:24
  Speaker 2: the bedside in his room. I was there with him.
• 23:28
  Speaker 2: It was pretty simple. The doctor showed me the two
• 23:30
  Speaker 2: little pieces of his colon that he took out in
• 23:32
  Speaker 2: the little jar, and I was like, okay, cool. So
• 23:35
  Speaker 2: that's what they sent off to tests to see if
• 23:38
  Speaker 2: basically if you have the ganglion cells or not. Isn't
• 23:41
  Speaker 2: that what they're called?
• 23:42
  Speaker 1: Yeah, gangling Yet I have the wavy bits in the
• 23:45
  Speaker 1: colon that pushed everything through. Yeah.
• 23:47
  Speaker 2: So he told me, like he explained, that's what they're
• 23:50
  Speaker 2: testing for. And I was like, okay, cool. And that
• 23:51
  Speaker 2: day I am an attorney, so I told him to
• 23:55
  Speaker 2: tell me exactly what this means. I needed all the information,
• 23:58
  Speaker 2: so he gave it to us. He drew us a
• 24:00
  Speaker 2: little diagram on our thing, but he kept saying, I
• 24:03
  Speaker 2: just don't think he has it because he passed his
• 24:06
  Speaker 2: first poop. He was still pooping a little bit, you know,
• 24:09
  Speaker 2: the poop was coming out, which, now that I think
• 24:12
  Speaker 2: about it, he's a baby. His poop is liquid. It
• 24:14
  Speaker 2: was just kind of slipping out. And he really was
• 24:18
  Speaker 2: hung up on the fact that his the contrast enema
• 24:21
  Speaker 2: that we did was very normal, super normal. Anyways, long
• 24:27
  Speaker 2: story short, he has harsh brunks. They found that the
• 24:31
  Speaker 2: part they tested, he had none of the sales. So honestly,
• 24:36
  Speaker 2: at that point, as much as I was scared because
• 24:37
  Speaker 2: I knew we were gonna have to have surgery, I
• 24:39
  Speaker 2: was so grateful that we finally had an answer. So
• 24:42
  Speaker 2: we had an answer. We had already decided that if
• 24:45
  Speaker 2: he had it, we weren't gonna get his surgery at
• 24:48
  Speaker 2: that hospital. We were gonna take him to another hospital
• 24:51
  Speaker 2: in Charlotte, North Carolina. So they set us up with
• 24:53
  Speaker 2: a surgeon in Charlotte. They sent us home that day
• 24:57
  Speaker 2: and they told us that we can manage it at
• 24:59
  Speaker 2: home until we were planning to do his surgery in Charlotte,
• 25:03
  Speaker 2: which was gonna be when he was about three months.
• 25:05
  Speaker 2: So he got diagnosed at about he was about three
• 25:07
  Speaker 2: weeks old. Then we were gonna do the surgery at
• 25:10
  Speaker 2: three months, so long as we were able to manage
• 25:12
  Speaker 2: it at home with irrigations. So they sent us home
• 25:15
  Speaker 2: with the irrigation tools. We had our tube, our saline water,
• 25:18
  Speaker 2: and our little syringe, and so we irrigated him three
• 25:22
  Speaker 2: times a day until we went in to keep him clean.
• 25:27
  Speaker 2: And our doctor said we did a great job irrigating him.
• 25:30
  Speaker 2: He said his colon looked great. Never thought that that
• 25:34
  Speaker 2: would be a yeah, never thought that'd be a flex.
• 25:37
  Speaker 2: But after the surgery he was like, his colon was great,
• 25:40
  Speaker 2: and I was like, thank you. I take my job
• 25:42
  Speaker 2: very seriously. So he goes in for surgery. Honestly, the
• 25:50
  Speaker 2: irrigations at home went well. They got pretty messy, but
• 25:54
  Speaker 2: they went well. He responded really well to them, which
• 25:57
  Speaker 2: his surgeon was hopeful that that meant that the part
• 26:01
  Speaker 2: of his colon that was affected wasn't going to be
• 26:03
  Speaker 2: a whole lot. So we go in he has the surgery.
• 26:06
  Speaker 2: I was really scared. I've heard that the surgeries can
• 26:09
  Speaker 2: last a really long time. I've heard that some of
• 26:12
  Speaker 2: them can last up to seven hours, and I know
• 26:14
  Speaker 2: it's because they have to go in, they have to
• 26:17
  Speaker 2: take the sections and test it, and honestly, they told
• 26:20
  Speaker 2: me a lot of it is just the waiting around
• 26:22
  Speaker 2: for pathology to get back to them. But luckily with
• 26:25
  Speaker 2: this new technology, they sent me a little text message
• 26:28
  Speaker 2: on an app every thirty minutes to update me while
• 26:31
  Speaker 2: he was in there to say, Hey, things are going
• 26:34
  Speaker 2: you know good, We're doing this, we're doing that, which
• 26:36
  Speaker 2: was great. His surgery only ended up being maybe two
• 26:41
  Speaker 2: and a half to three hours, which is what he expected,
• 26:43
  Speaker 2: and I was like, that seems pretty quick. His surgeon
• 26:48
  Speaker 2: was pretty experienced too, which is why we were happy
• 26:50
  Speaker 2: with him. So afterwards he comes in, he said, everything
• 26:54
  Speaker 2: went really well. I think they took out fifteen centimeters,
• 26:59
  Speaker 2: which I'm pretty sure is considered short segment hirshbrungs, which
• 27:05
  Speaker 2: you know, was what I was hoping. I feel like,
• 27:08
  Speaker 2: obviously you hope that it's going to be less of
• 27:10
  Speaker 2: it affected because I don't know for sure, but I
• 27:13
  Speaker 2: feel like, in the long term, you want to keep
• 27:15
  Speaker 2: as much as you can, I feel like because it
• 27:17
  Speaker 2: helps with your digestion and all of that overall. So
• 27:21
  Speaker 2: it was the short segment, which is what he thought
• 27:23
  Speaker 2: it was gonna be just based on how we responded
• 27:25
  Speaker 2: to everything. So we were good. Our hospital stay was
• 27:28
  Speaker 2: honestly pretty good. He was no food for about three days,
• 27:35
  Speaker 2: and his pain was pretty bad at the beginning, but
• 27:38
  Speaker 2: then it honestly went away closer to that three ish
• 27:41
  Speaker 2: day mark and we were finally able to start feeding him.
• 27:45
  Speaker 2: He was pooping, he was doing well. We were able
• 27:48
  Speaker 2: to get discharged with really no complications. We came home
• 27:52
  Speaker 2: and we were supposed to go back for a follow
• 27:54
  Speaker 2: up in about two weeks, and it was going to
• 27:56
  Speaker 2: be right after Christmas when we went to follow up,
• 28:00
  Speaker 2: around the two week mark, and a lot of people
• 28:02
  Speaker 2: say this is when the pooping kind of slows down significantly.
• 28:06
  Speaker 2: So from the time you get the surgery to when
• 28:09
  Speaker 2: it's around that two week mark before you go back,
• 28:12
  Speaker 2: his pooping had started slowing down, like it really wasn't
• 28:15
  Speaker 2: coming out. But we knew when we went back we
• 28:17
  Speaker 2: were going to do the dilations, which are these little rods,
• 28:20
  Speaker 2: these little white rods that you are different sizes and
• 28:24
  Speaker 2: you stick them with their little booty to help stretch
• 28:26
  Speaker 2: out the incision site. He had the Swinson pull through surgery.
• 28:32
  Speaker 2: I guess I should say that he didn't come out
• 28:34
  Speaker 2: with a coostmy. He got the full pull through surgery,
• 28:37
  Speaker 2: which was also we were super grateful that we were
• 28:39
  Speaker 2: able to do the pull through that day, so we
• 28:43
  Speaker 2: got the Swinson pull through. But with that, obviously part
• 28:47
  Speaker 2: of the colon reattaches in his I guess it's his
• 28:50
  Speaker 2: anus or his rectum. I'm not sure. I don't think
• 28:52
  Speaker 2: he has a rectum anymore. And if he does, I
• 28:54
  Speaker 2: think it's just a teeny bit. I think the doctor
• 28:56
  Speaker 2: said he had to keep a little bit to be
• 28:58
  Speaker 2: able to attach.
• 29:00
  Speaker 1: Yes, that sound that sounds that sounds right to me,
• 29:04
  Speaker 1: which he said, that sounds right to me.
• 29:06
  Speaker 2: I think this lady told me anyways, But that part
• 29:09
  Speaker 2: right there can get something called a stricture where the
• 29:11
  Speaker 2: scar tissue when it's healing just gets small. So we
• 29:13
  Speaker 2: have the dilations to keep it open so he can
• 29:16
  Speaker 2: poop the first dilations. I don't know what I expected.
• 29:19
  Speaker 2: I guess I just expected that the floodgates were gonna open.
• 29:22
  Speaker 2: I'm like, we're gonna dilate him and it's just gonna
• 29:24
  Speaker 2: come out. We're gonna be great. That's not what happened.
• 29:27
  Speaker 2: He struggled for the next few weeks, he didn't want
• 29:31
  Speaker 2: to eat almost at all. He was losing weight again,
• 29:34
  Speaker 2: he wasn't pooping. I had started him in daycare because
• 29:37
  Speaker 2: I had to go back to work at that point.
• 29:40
  Speaker 2: His first week at take care, he wouldn't eat, and
• 29:44
  Speaker 2: then he was spitting off this like it was I
• 29:47
  Speaker 2: think what he was spitting up was like stomach acid
• 29:49
  Speaker 2: because he wasn't eating, but it was freaking them out
• 29:52
  Speaker 2: and they knew that he had this condition already, and
• 29:55
  Speaker 2: so after that, I was like, we're gonna keep you home.
• 29:58
  Speaker 2: We've got to figure out what's going on. All in
• 30:00
  Speaker 2: all of his doctors, I'm like, he's not pooping. He's
• 30:01
  Speaker 2: not pooping. They were like, try this, try that, give
• 30:04
  Speaker 2: him some paar juice, and I was like, he's not eating.
• 30:08
  Speaker 2: He won't eat the parent juice, will get the paara juice.
• 30:12
  Speaker 2: So anyways, they were just, you know, trying to be helpful.
• 30:16
  Speaker 2: But finally he started eating some again. We started getting
• 30:20
  Speaker 2: some weight, thank goodness, and as the dilations went up,
• 30:24
  Speaker 2: I could tell things were definitely getting better. So we
• 30:28
  Speaker 2: there at the beginning, we were going to Charlotte about
• 30:32
  Speaker 2: every two weeks, and we live about three and a
• 30:34
  Speaker 2: half hours from the hospital where he got surgery, so
• 30:37
  Speaker 2: we were traveling about seven hours to take him there,
• 30:41
  Speaker 2: which I was fine with because I wanted the best
• 30:43
  Speaker 2: place at least in our state for him. So and
• 30:47
  Speaker 2: it was funny because we will go in for the
• 30:51
  Speaker 2: the appointment, and the appointments are pretty short if you've
• 30:53
  Speaker 2: never gone for just a follow up dilation appointment at least.
• 30:56
  Speaker 2: How our surgeon does it. He comes in, he sticks
• 30:59
  Speaker 2: his pain than up his little booty to uh see
• 31:03
  Speaker 2: what he feels in there, and then he gets a
• 31:05
  Speaker 2: dilator and see if it fits. And he's like, use
• 31:07
  Speaker 2: this one for this many days or whatever. All right,
• 31:10
  Speaker 2: see you in two weeks, and then we're on the
• 31:13
  Speaker 2: road again. But now he is seven months old, he's
• 31:19
  Speaker 2: doing really well. He finally made it up to the
• 31:21
  Speaker 2: size dilator that you're he's supposed to be at. So
• 31:25
  Speaker 2: he told me, by I think it's four ish months,
• 31:27
  Speaker 2: you're supposed to be at a certain size, and then
• 31:30
  Speaker 2: we're using that until he turns eight months, and eight
• 31:33
  Speaker 2: months we go up to our final dilator size, and
• 31:38
  Speaker 2: we will do that until he turns about a year old.
• 31:41
  Speaker 2: And after that we should be done with dilations, and
• 31:46
  Speaker 2: he poops normally ish now like he poops what I
• 31:50
  Speaker 2: would think is a good amount. His surgeon still wants
• 31:55
  Speaker 2: us to use my relax on him sometimes, and obviously
• 31:58
  Speaker 2: what I'm saying some just don't agree with this. Some
• 32:01
  Speaker 2: surgeons probably tell everybody different stuff. This is working for us,
• 32:04
  Speaker 2: so this is what we're doing. We work with a
• 32:06
  Speaker 2: surgeon and a gi together and sometimes even they have
• 32:09
  Speaker 2: different opinions. But I kind of just turn and figure
• 32:12
  Speaker 2: out what I think works best. So we do some MiraLax.
• 32:14
  Speaker 2: Because our surgeon did tell us, and I guess I
• 32:17
  Speaker 2: didn't think about this. He said that babies can be
• 32:20
  Speaker 2: constipated in a way that you don't think about as
• 32:22
  Speaker 2: an adult, Like if an adult is constipated, you just
• 32:25
  Speaker 2: can't poop, he said, But like babies, they can be
• 32:28
  Speaker 2: constipated and you don't really even know it, so, which
• 32:32
  Speaker 2: I mean makes sense because the poop's coming out. Some
• 32:35
  Speaker 2: of it's coming out, but it could be like impacted
• 32:38
  Speaker 2: in there in like a certain spot and stretching out
• 32:41
  Speaker 2: the colon. And he says it's really key to keep
• 32:43
  Speaker 2: the colon like not stretched or not dilated and so
• 32:47
  Speaker 2: I was like, okay, so I did the MI relax
• 32:49
  Speaker 2: maybe every now and then to just keep everything moving.
• 32:53
  Speaker 2: But he's been doing well. He Honestly, I don't know
• 32:55
  Speaker 2: if it's Hrsprung's or if it's just him. He's a
• 32:58
  Speaker 2: tiny little thing. The growth chart, he's not even close
• 33:02
  Speaker 2: to being on it. He's just real little. He doesn't
• 33:05
  Speaker 2: have a huge appetite. I just think he doesn't like milk.
• 33:09
  Speaker 2: His GI is always like he's so small, like we
• 33:12
  Speaker 2: need him to gain weight, and I'm like, he eats
• 33:14
  Speaker 2: what he wants and then he doesn't want anymore. I
• 33:16
  Speaker 2: don't know if it's a hershbrongs thing. It could be,
• 33:19
  Speaker 2: it could not be.
• 33:22
  Speaker 1: Not sure. I'm not sure on that. I don't know.
• 33:26
  Speaker 1: Just try to think of people I've interviewed, and I
• 33:30
  Speaker 1: don't know whether it's a whether we're shorter because I'm
• 33:35
  Speaker 1: not particularly tall. I'm like five eight, so I'm not
• 33:38
  Speaker 1: I'm not particularly tall. But then I do know a
• 33:41
  Speaker 1: couple of people who do have harshprungs who are a
• 33:43
  Speaker 1: little bit tall. But I yeah, I don't know, because well,
• 33:48
  Speaker 1: I mean, I guess you know, the less you eat,
• 33:50
  Speaker 1: the less you're gonna grow and the shores you'll be
• 33:53
  Speaker 1: But yeah, I'm not too sure on that.
• 33:56
  Speaker 2: Yeah, I don't know. I've seen stuff some on groups
• 33:58
  Speaker 2: on Facebook, Hirschbrons groups, and some people in there talk
• 34:01
  Speaker 2: about their children being small. But then there's one baby
• 34:04
  Speaker 2: that I'm friends with his mom on Facebook, and that
• 34:06
  Speaker 2: baby's huge. He's just I mean, he's massive, and I'm like,
• 34:11
  Speaker 2: he has hirshprins And I'm like, okay, maybe it's not
• 34:12
  Speaker 2: a hirsprunks thing. Maybe it's just my son's personality because
• 34:16
  Speaker 2: I feel like he doesn't really throw up a lot,
• 34:19
  Speaker 2: which also was kind of weird through our whole process.
• 34:22
  Speaker 2: He wasn't really throwing up, but he's like the type
• 34:25
  Speaker 2: of baby to wear of his stomach hurts. He just
• 34:27
  Speaker 2: won't to He was like, I'm not gonna eat. I'm
• 34:29
  Speaker 2: not gonna eat and then throw it up. I'm just
• 34:30
  Speaker 2: not gonna eat it. And I'm like, okay, cool. But yeah,
• 34:34
  Speaker 2: that's kind of where we're at right now. We are
• 34:36
  Speaker 2: just managing it. It's kind of weird because now that
• 34:42
  Speaker 2: we're on this other side of it, he's still super young,
• 34:46
  Speaker 2: but it's almost like you can for not forget about
• 34:49
  Speaker 2: it because I still have to dilate him twice a day.
• 34:52
  Speaker 2: But it's like, Okay, well he's and a lot of
• 34:55
  Speaker 2: people are like, oh he's fixed now, like he's better,
• 34:58
  Speaker 2: and I'm like, no, I think it's probably gonna affect
• 35:01
  Speaker 2: him forever. And people don't like he's saying that, Like
• 35:05
  Speaker 2: they don't like it when you say that, because you're like, well,
• 35:06
  Speaker 2: don't think negatively. I'm like, I'm not thinking negatively. It
• 35:09
  Speaker 2: just is what it is. Like, we're probably gonna hear
• 35:11
  Speaker 2: roadblocks in the future, and if we don't, that would
• 35:15
  Speaker 2: be a miracle. But it just is what it is.
• 35:18
  Speaker 1: Yeah, I mean maybe maybe will maybe he won't. I
• 35:21
  Speaker 1: think there are there is a phrase I hear quite
• 35:26
  Speaker 1: a lot where people saying, well, I had hirshbruns and
• 35:29
  Speaker 1: you think, well, no, the ganglion cells didn't grow back.
• 35:33
  Speaker 1: You have hershbrun. I still have hrshbrugs. Yes, that that
• 35:38
  Speaker 1: didn't work, got taken out, but the ganglan cells didn't
• 35:41
  Speaker 1: grow back. I didn't grow some colon over the last
• 35:44
  Speaker 1: thirty years. It just doesn't work like that, but it is.
• 35:48
  Speaker 1: It's and I think, yeah, you're right when when you say, oh,
• 35:52
  Speaker 1: he has it for life, you know, people then get
• 35:55
  Speaker 1: slightly concerned and scared about that. Oh yeah, but but
• 35:59
  Speaker 1: that not anything to be concerned about. I mean, yes,
• 36:03
  Speaker 1: you go through of course, you'll go through ups and downs.
• 36:07
  Speaker 1: It sounds like he's doing fantastically at the moment. It
• 36:10
  Speaker 1: sounds like you're doing a wonderful job as well. But yes,
• 36:16
  Speaker 1: it is. It is going to be a condition you
• 36:18
  Speaker 1: have for life. But there are I mean, it's so
• 36:21
  Speaker 1: many people that go on live brilliant lives, go on
• 36:24
  Speaker 1: achieve amazing things, and I'm sure Bolan will do exactly
• 36:28
  Speaker 1: the same. You know, it's it's not a condition. Yes,
• 36:33
  Speaker 1: it's a condition that's managed and the ups and downs,
• 36:37
  Speaker 1: but there's still so much that can be achievedn't in
• 36:39
  Speaker 1: my eyes anyway.
• 36:41
  Speaker 2: Yeah, it's just for me, it's something like I need
• 36:44
  Speaker 2: I want people to know that he has it, because well,
• 36:47
  Speaker 2: first off, I want to bring awareness to it because
• 36:49
  Speaker 2: it's something I had never heard of. And for me too,
• 36:53
  Speaker 2: it's weird because he has a less severe version. So
• 36:57
  Speaker 2: sometimes it feels like, oh, well, do I really need
• 37:02
  Speaker 2: to be sharing this or whatever. But honestly, sometimes the
• 37:05
  Speaker 2: quote unquote less severe versions, I think they're harder to
• 37:08
  Speaker 2: diagnose sometimes because the doctors, at least like in my case,
• 37:12
  Speaker 2: they're like, well, I just don't think he has it.
• 37:14
  Speaker 2: And I've heard people sometimes I don't even get diagnosed.
• 37:16
  Speaker 2: You know, they can be toddlers because the cells can
• 37:21
  Speaker 2: the way I've been explained, like at the very bottom,
• 37:24
  Speaker 2: let's say of your colon, there's no cells, but then
• 37:28
  Speaker 2: in the next little section there are a few, or
• 37:30
  Speaker 2: there are a few, but they're not quite right, and
• 37:34
  Speaker 2: so it could be like that. So I just try
• 37:37
  Speaker 2: and share it, you know, if you have a suspicion,
• 37:39
  Speaker 2: follow it. But yeah, I just I want him to
• 37:43
  Speaker 2: know he has it. Like I've had some people that
• 37:45
  Speaker 2: have kind of been like, well, should we even tell
• 37:47
  Speaker 2: him he has it? I'm like, yeah, we need to
• 37:49
  Speaker 2: tell him he has it. That would be absolutely insane
• 37:53
  Speaker 2: to not tell him. And you know, if he gets older,
• 37:56
  Speaker 2: if he's in elementary school and he wants a private
• 37:59
  Speaker 2: bathroom to go do his business, because I'm sure he'll
• 38:02
  Speaker 2: probably go potty more than most kids, I want to
• 38:05
  Speaker 2: get him a little doctor's not that says he can
• 38:07
  Speaker 2: go and feel comfortable or do this and that, you know.
• 38:12
  Speaker 2: And for me a big thing is I have not
• 38:16
  Speaker 2: gotten a solid answer, and I don't think they have one.
• 38:18
  Speaker 2: On the genetics around it, I have asked many times,
• 38:22
  Speaker 2: I'm like, is it genetic? And they're like, no, but yes,
• 38:26
  Speaker 2: like we think it's genetic if they have these other
• 38:28
  Speaker 2: like conditions with it. So there's certain other like genetic
• 38:31
  Speaker 2: conditions that I think it's more prevalent in. But anecdotally
• 38:36
  Speaker 2: I know families that have contacted me that have said, like,
• 38:40
  Speaker 2: if the dad in the family has it, all of
• 38:42
  Speaker 2: his sons also have it, and that I'm like, that's weird.
• 38:48
  Speaker 2: So I just want to make him aware that, like
• 38:51
  Speaker 2: it's a possibility if you ever want to have kids.
• 38:55
  Speaker 1: I'm I'm just racking my brains to think of because
• 38:59
  Speaker 1: I'm sure or there is somebody I've interviewed where that
• 39:02
  Speaker 1: isn't the case. Genetics are something that fascinates me, and
• 39:08
  Speaker 1: quite simply from every doctor I've either had on here
• 39:12
  Speaker 1: or spoken to privately or spoken to the conference we
• 39:15
  Speaker 1: had in February comes back with the same answer of
• 39:18
  Speaker 1: I don't know, and it's so so difficult because for me,
• 39:24
  Speaker 1: for many years, I thought, you know, having done no
• 39:27
  Speaker 1: research in it for thirty years, I thought it's genetic,
• 39:32
  Speaker 1: so if I have children in the future, they'll have hersprungs.
• 39:35
  Speaker 1: But I've now met so many people and with different
• 39:39
  Speaker 1: types of Hirschprungs. It's not just oh, if you've got
• 39:41
  Speaker 1: long segment then it'll be genesis, or if you've got
• 39:43
  Speaker 1: short seven that will be gener debt or whatever. I've
• 39:46
  Speaker 1: met so many people with so many different types of hirshprungs,
• 39:49
  Speaker 1: all five different types. Some have gone on to have
• 39:53
  Speaker 1: children that do have hershprungs, some have gone on to
• 39:56
  Speaker 1: have children that don't have hirsprungs. Some have had children
• 40:00
  Speaker 1: where one does, one doesn't, or one does and two don't,
• 40:04
  Speaker 1: or various combinations. So I think, and I get those
• 40:08
  Speaker 1: messages where people say to me, well, it's genetic, and
• 40:11
  Speaker 1: I'm like, well, hang on, because I've got evidence to
• 40:16
  Speaker 1: suggest that there is a genetic part. I'm not disputing that,
• 40:20
  Speaker 1: but to say that it will be passed on isn't
• 40:25
  Speaker 1: necessarily true. And we just don't know the answer here.
• 40:29
  Speaker 2: Yeah, And like for me, like I said, I've seen
• 40:32
  Speaker 2: families where the dad's had it and the sons have
• 40:34
  Speaker 2: had it. But obviously there's tons of families where they
• 40:38
  Speaker 2: have it and then nobody else has it because our
• 40:40
  Speaker 2: doctor said it can just be it could just happen.
• 40:44
  Speaker 2: But you know, if my son he may not even
• 40:48
  Speaker 2: want kids, which is fine. He may just be like,
• 40:51
  Speaker 2: I want to live out here with no kids, and
• 40:52
  Speaker 2: that's great. But if he did want them, it's something.
• 40:54
  Speaker 2: It's just something that you need to know about your
• 40:56
  Speaker 2: life if you have it, even if it's not causing you,
• 40:58
  Speaker 2: quote unquote problems as an adult, you need to at
• 41:01
  Speaker 2: least know if it's in your history so you can
• 41:03
  Speaker 2: make that decision be like, Okay, well it could be
• 41:04
  Speaker 2: a possibility if I did have a kid, and if
• 41:07
  Speaker 2: they had it, and then this could be something. Or
• 41:09
  Speaker 2: you could have a kid and it never be a problem.
• 41:11
  Speaker 2: You know, it never happened. So I mean, also, I
• 41:14
  Speaker 2: think that it's still not very I mean, it's not
• 41:19
  Speaker 2: a new condition. Obviously, it's been around forever. Really, Yeah,
• 41:24
  Speaker 2: I feel like they've really started studying it, and you
• 41:26
  Speaker 2: could correct me if I'm wrong. I've just seen things
• 41:28
  Speaker 2: maybe in like like the seventies or the sixties when
• 41:32
  Speaker 2: they really were able to get into it.
• 41:34
  Speaker 1: But yeah, and that's a tricky one for me. I
• 41:38
  Speaker 1: was talking to somebody else about this as well. That
• 41:41
  Speaker 1: because I mean, I think now that it's being looked
• 41:45
  Speaker 1: at more. But is that because I'm in the Hirshbrungs
• 41:49
  Speaker 1: bubble effectively, and I'm looking at it all day every day,
• 41:53
  Speaker 1: you know, and I speak to people all the time
• 41:55
  Speaker 1: who either have Hirshbrungs or have children with hirshbrungs. Am
• 41:58
  Speaker 1: I now just coming across it because that's the type
• 42:02
  Speaker 1: of things that I follow on Instagram, TikTok, Facebook, whatever.
• 42:05
  Speaker 2: Yeah? Or is it the algorithms?
• 42:08
  Speaker 1: Yeah? Or is more being done? I think it's a
• 42:12
  Speaker 1: bit of both.
• 42:12
  Speaker 2: Personally, Yeah, I think so too. And I think, you know,
• 42:16
  Speaker 2: now that we have more technology, and I think people
• 42:20
  Speaker 2: Hirshprungs and non Hirshbrungs are just more open to talking
• 42:23
  Speaker 2: about their medical conditions now, Like people in our generation
• 42:29
  Speaker 2: are just more comfortable talking about it. Even when I
• 42:32
  Speaker 2: was pregnant, like I talked about everything that was going
• 42:35
  Speaker 2: on in you know, the ladies of my life who
• 42:37
  Speaker 2: are like my mom's age and stuff, they were like,
• 42:39
  Speaker 2: we never talked about that, Like I never told my
• 42:41
  Speaker 2: friends about that, And I was like, that's crazy, why not?
• 42:44
  Speaker 2: So think it too. It's just people are talking about it,
• 42:46
  Speaker 2: and they're more comfortable just talking about it. I mean,
• 42:49
  Speaker 2: people could be embarrassed to talk about hirshprungs because I mean,
• 42:51
  Speaker 2: let's fay say it's about poop, which is kind of
• 42:55
  Speaker 2: like if I tell people about it, like just random
• 42:57
  Speaker 2: people I meet, I feel like when I talk about it,
• 43:00
  Speaker 2: it sounds it's not silly, but it could sound silly.
• 43:02
  Speaker 2: It's like, well, my son couldn't poop.
• 43:04
  Speaker 1: And they're like, Okay, I guess if you just stopped
• 43:08
  Speaker 1: some random person on the street said that, it would
• 43:10
  Speaker 1: be a tad weird. Granted, yeah, but if you tell
• 43:14
  Speaker 1: me we need the old doctors, then yeah, it's fine.
• 43:17
  Speaker 2: So like, okay, yeah, you're just gonna figure out how
• 43:19
  Speaker 2: to talk about it to where it doesn't sound so weird.
• 43:22
  Speaker 2: I learned that when you're in the hospital, whenever you
• 43:25
  Speaker 2: are what I would call a shart, they call it
• 43:27
  Speaker 2: a smear. Oh, whenever my son was doing just these
• 43:31
  Speaker 2: like little tiny poops that were just like, I mean,
• 43:34
  Speaker 2: that's what I thought. I'm like, it's a shart, and
• 43:36
  Speaker 2: I was saying, I don't want to have to keep
• 43:37
  Speaker 2: saying this to the doctor. It sounds so silly, but
• 43:41
  Speaker 2: they were like, it's a They kept calling it a smear,
• 43:43
  Speaker 2: and I'll say, okay, well I'll call it that. It's
• 43:45
  Speaker 2: the same thing. It's just a little it's poop, but
• 43:47
  Speaker 2: you know it is I find clearly, based on how
• 43:51
  Speaker 2: I've talked about it, I find not comedy. But I
• 43:55
  Speaker 2: try and keep it as light as I can, because
• 43:58
  Speaker 2: while I was going through it, it was terrible obviously,
• 44:00
  Speaker 2: and it's still can be terrible. But you gotta make
• 44:04
  Speaker 2: it through somehow. And my son's doing well, which is good.
• 44:07
  Speaker 2: He's growing.
• 44:10
  Speaker 1: I'd so that was going to be my next question
• 44:13
  Speaker 1: in terms of sort of future for Boeen. I don't
• 44:18
  Speaker 1: know if you've got obviously you've got checkups and things
• 44:22
  Speaker 1: going on as well, but what do you kind of
• 44:25
  Speaker 1: see medically and sort of non medically for him in
• 44:30
  Speaker 1: his life coming forward.
• 44:33
  Speaker 2: Well, medically from what I know from what his surgeon
• 44:35
  Speaker 2: has told me, he wants to follow him through party training.
• 44:43
  Speaker 2: Like I said, I think our dilations are going to
• 44:44
  Speaker 2: stop at around a year old. As long as he
• 44:47
  Speaker 2: keeps responding to the dilations, which he has been, then
• 44:52
  Speaker 2: we should be good. He said, he wants to follow
• 44:54
  Speaker 2: him through party training and I don't really know why,
• 44:58
  Speaker 2: but I do know that they said it can be
• 45:00
  Speaker 2: harder to potty trained children with hrsprungs, and I don't
• 45:04
  Speaker 2: really know why that is. I guess we'll see. I mean,
• 45:08
  Speaker 2: I think potty training's difficult no matter how you cut it.
• 45:11
  Speaker 2: But our doctor is very concerned with the consistency of
• 45:13
  Speaker 2: his poop, so I think he wants us to make
• 45:16
  Speaker 2: sure that he doesn't get backed up. That's not super hard,
• 45:20
  Speaker 2: that we can just keep it moving because like I said,
• 45:23
  Speaker 2: he doesn't want his colon to get distended, because I
• 45:25
  Speaker 2: guess there still can be problems. And what he's told
• 45:28
  Speaker 2: us too is at the very bottom of his colon,
• 45:30
  Speaker 2: which is where he still has some of his rectum,
• 45:34
  Speaker 2: still doesn't have the cells in it because he had
• 45:38
  Speaker 2: to keep a little bit of the rectum because he
• 45:41
  Speaker 2: has to be able to attach it. So there is
• 45:42
  Speaker 2: still a part that doesn't have the cells. So I
• 45:46
  Speaker 2: think that that can cost some you know, constipation issues
• 45:50
  Speaker 2: if we let it get out of control. But medically,
• 45:53
  Speaker 2: I mean, I'm hoping that after he's a toddler, that
• 45:58
  Speaker 2: we can just man nidge it like any other person.
• 46:01
  Speaker 2: Who may have some tummy troubles. My whole family has
• 46:05
  Speaker 2: tummy troubles mostly. I mean it's ibs usually, so we're
• 46:10
  Speaker 2: no stranger to tummy troubles. I'm just gonna treat that like,
• 46:15
  Speaker 2: you know, you may have to go to the bathroom
• 46:16
  Speaker 2: more or less, or we'll have to, you know, give
• 46:18
  Speaker 2: you some meralax, or just make sure that things are
• 46:21
  Speaker 2: moving along. As weird as it is. I feel like
• 46:24
  Speaker 2: I'm just gonna have to be on top of him
• 46:26
  Speaker 2: to be like, Okay, did you poop today? How much?
• 46:29
  Speaker 2: Like you gotta tell me if you haven't pooped in
• 46:30
  Speaker 2: this many days? Because obviously the intracolitis is a concern,
• 46:36
  Speaker 2: and it's like my worst fear. You know, we knock
• 46:41
  Speaker 2: on wood, haven't. I don't think we've had about of
• 46:44
  Speaker 2: it yet. I know it's I'm not gonna say it's inevitable,
• 46:49
  Speaker 2: but most people I feel like they have hers springs
• 46:52
  Speaker 2: have at least had it once. But I'm hoping that
• 46:54
  Speaker 2: we can maybe avoid it. I don't know, but that's
• 46:57
  Speaker 2: what I want to avoid. And like I said, I'm
• 47:01
  Speaker 2: in groups, and here's the thing to I'm in groups
• 47:03
  Speaker 2: on Facebook, and people a lot of times go in
• 47:05
  Speaker 2: the groups to make a comment when things are going badly.
• 47:09
  Speaker 2: So it's it's like you see more of it. It's like, okay, everybody,
• 47:13
  Speaker 2: everybody has intecal itis. What I'm gonna get it. But
• 47:16
  Speaker 2: in my logical brain, I'm like, they're posting about it
• 47:19
  Speaker 2: because it's happening. Yeah. So, but as a mom it
• 47:23
  Speaker 2: still freaks you out or as a parent, you're just like, oh, gosh,
• 47:26
  Speaker 2: it's gonna happen. And I am an anxious person naturally.
• 47:31
  Speaker 2: Oh and my anxiety manifests in medical in medical anxiety
• 47:36
  Speaker 2: like that is my like brand of anxiety. So all
• 47:40
  Speaker 2: of this has really put me to the test, which
• 47:42
  Speaker 2: is great overcoming my fears by when is it the
• 47:47
  Speaker 2: like immersion therapy or whatever.
• 47:49
  Speaker 1: Yes, yes, most certainly. But thank you ever so much
• 47:54
  Speaker 1: for coming on. It has been a has been a
• 47:56
  Speaker 1: pleasure to have you on come and share your story. Yes,
• 48:00
  Speaker 1: thank you ever so much for doing that. And guys,
• 48:03
  Speaker 1: without saying, but I'll say anyway that I wish you'd
• 48:06
  Speaker 1: be your husband and bowen all the very best and
• 48:11
  Speaker 1: I guess as little medical intervention as bossivil and and
• 48:16
  Speaker 1: all the very very best for the future.
• 48:18
  Speaker 2: Yes, well, thank you so much for having me. Yeah,
• 48:22
  Speaker 2: I was just happy to share, and I hope that
• 48:25
  Speaker 2: at least someone out there can find some use out
• 48:28
  Speaker 2: of something I said.
• 48:29
  Speaker 1: So absolutely, And one more thing before I forget sorry,
• 48:33
  Speaker 1: where can people find you social media wise?
• 48:37
  Speaker 2: Goodness? Yes, so I am on Instagram. My Instagram handle
• 48:43
  Speaker 2: is Tay Lamon's and you spell Lamon's l A m
• 48:47
  Speaker 2: m O n d s with an underscore. And I
• 48:51
  Speaker 2: guess my TikTok is really probably more where you might
• 48:53
  Speaker 2: want to follow me, which is funny because sharing my
• 48:55
  Speaker 2: TikTok seems crazy. My TikTok is. I don't know if
• 49:01
  Speaker 2: you if your TikTok handle. I guess you can just
• 49:02
  Speaker 2: find me by my name, Taylor Lamont's l A m
• 49:05
  Speaker 2: m o n d s. It's not a very common
• 49:08
  Speaker 2: last name, so you should be able to find it. Yeah,
• 49:11
  Speaker 2: I have a Hirshbrung's my Hirshbrung's journey shared on there,
• 49:15
  Speaker 2: so that's useful. I also have dance videos that are
• 49:19
  Speaker 2: not related to Hirshbrugs.
• 49:23
  Speaker 1: Well, thank you so so much. I wish you all
• 49:25
  Speaker 1: the best of the future.
• 49:27
  Speaker 2: Yes, thank you so much.
• 49:32
  Speaker 1: Thank you for listening to the podcast. Find us on
• 49:35
  Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
• 49:40
  Speaker 1: on Spotify by searching Tom's Hirshbrung's Podcast