Latest / Tom's Hirschsprung's Podcast / Episode 96 - With Sydney Foland

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Episode 96 - With Sydney Foland · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode ninety six of
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Speaker 1: Tom's Hirshbrun's Podcast. I am very pleased to be joined
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Speaker 1: by Sydney this evening or this afternoon where you are
0:57
Speaker 1: welcome to the podcast.
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Speaker 2: Sydney, thank you grabbing me.
1:01
Speaker 1: Thank you so much for coming on. And we are
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Speaker 1: here to talk about your daughter and her short segment hirsprungs.
1:10
Speaker 1: I know you said a little bit as well that
1:12
Speaker 1: she's about a year and a half. Is that right?
1:16
Speaker 2: Ye? Months today?
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Speaker 1: Seventeen months today? Oh, happy seventeen month birth. That's not
1:22
Speaker 1: really a thing, is that? But if you, if you'd like,
1:28
Speaker 1: you can start from just sort of the very beginning,
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Speaker 1: if that's okay, yep, I can do that.
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Speaker 2: So we had a pretty normal bringiancy. Everything was looking good.
1:39
Speaker 2: Nothing no rank flags, no high risk, nothing, and normal delivery.
1:44
Speaker 2: She was eating really good. The first two times she breastfed,
1:48
Speaker 2: was really good, and then she just got like super tired,
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Speaker 2: and then she started like gagging every time she was
1:54
Speaker 2: laid flat, and then she started spitting up and spitting up.
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Speaker 2: So one of the nurses took her and suctioned her out,
2:01
Speaker 2: and they're like, yeah, sometimes we can just get the
2:04
Speaker 2: fluids stuck in their lungs and their little stomachs and stuff.
2:07
Speaker 2: So they didn't really think anything of it, and we
2:09
Speaker 2: were still like attempting to breastfeed, but she wasn't having it,
2:13
Speaker 2: and every time she'd lay flat, she'd still just gag
2:15
Speaker 2: and gag. So finally the Obie supervisor came in on
2:19
Speaker 2: the second day that we were still in the hospital
2:22
Speaker 2: and they're like, well, she's still a little na'sn't pooped,
2:25
Speaker 2: so we're gonna keep you another day like monitor and everything.
2:28
Speaker 2: And then I told her about what was going on
2:30
Speaker 2: with her gagging and her puking and the not eating,
2:33
Speaker 2: and she's like, well, that's weird. She was eating so
2:35
Speaker 2: good the day before, and so she took her and
2:38
Speaker 2: suctioned her out again, and then she says, she got
2:41
Speaker 2: like five milli liters of like just crup cruddy stuff
2:45
Speaker 2: out of her, and then as soon as she got
2:47
Speaker 2: done suction her out, she had cuped bile. And so
2:51
Speaker 2: she called our doctor back in and our doctor was like, Oh,
2:55
Speaker 2: we're gonna do some abdominal X rays if that's okay
2:58
Speaker 2: with you, and I was like, yes, please give us
3:00
Speaker 2: some answers. Absolutely. And this was at a little rural
3:04
Speaker 2: hospital that we it's about thirty miles from where we live.
3:08
Speaker 2: And the labor and delivery room floor that we were
3:12
Speaker 2: on it wasn't even a floor. I guess it was
3:14
Speaker 2: just a section of the hospital. But there's only three
3:16
Speaker 2: beds in it, so like it's tiny. And yeah, she's
3:20
Speaker 2: like the x rays don't look very good. It's not
3:23
Speaker 2: enough to be diagnostic, but it's enough for us to
3:25
Speaker 2: send it on to the children's hospital and see what
3:28
Speaker 2: they recommend. I was like, oh, boy, okay, that's fine.
3:33
Speaker 2: And at this point, it's like eleven pm at night
3:38
Speaker 2: of like day two of her life, not even and
3:43
Speaker 2: so they heard back like right away and they're like, yep,
3:46
Speaker 2: they want to come get her. They're gonna take her
3:48
Speaker 2: by airplane. The Children's hospital is like a little over
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Speaker 2: two hours from us, and so they send their team
3:57
Speaker 2: by plane to our little rural strip airport that we have,
4:03
Speaker 2: and then the local volunteer ambulance went and picked their
4:07
Speaker 2: team up and brought them to the hospital and they
4:10
Speaker 2: came in and introduced themselves and told us, like what
4:13
Speaker 2: all was gonna happen. They placed an ivy and an
4:16
Speaker 2: og tube, and then they switched her to suction in
4:19
Speaker 2: their little incubator thing, and they're like, we're gonna say,
4:22
Speaker 2: really good care of your baby. Like when we get there,
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Speaker 2: we're gonna do like the variant and the X ray
4:28
Speaker 2: or the yeah, the x ray and do all these
4:31
Speaker 2: tests to see what's going on. And I was like, okay,
4:35
Speaker 2: sounds good. Yeah. We didn't get to ride in the plane,
4:38
Speaker 2: so we had the watch her get wheeled out, and
4:41
Speaker 2: then we it was like three in the morning at
4:44
Speaker 2: this point, two or three, and we went out pack
4:50
Speaker 2: all our stuff up as fast as we could, went
4:52
Speaker 2: to go get to our suburban, and the battery it
4:54
Speaker 2: was dead. So our nurse came out, jumped our car
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Speaker 2: and then we followed the the airplane and our car
5:03
Speaker 2: and we got up there and As soon as we
5:06
Speaker 2: are getting to Omaha, which is where the Nebraska Children's
5:09
Speaker 2: Hospital is, our doctor, one of the doctors where those
5:14
Speaker 2: called us and told us that they she finally made it.
5:16
Speaker 2: And then they were getting her in and taking her
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Speaker 2: down to the enema X ray and it's like okay.
5:22
Speaker 2: So they took us up to the NIKU room that
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Speaker 2: she was gonna be in and we got to like
5:28
Speaker 2: briefly see her as she was wheeled back out of
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Speaker 2: the room to go down, and then it was just
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Speaker 2: like silence, there's nothing, and I was like, oh, this
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Speaker 2: is terrifying. But then they had the surgery team come
5:40
Speaker 2: up after her enema and we're like, well, we see
5:44
Speaker 2: something that's really concerning and it kind of looks like
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Speaker 2: a perforation of the bowl and so we're like bom.
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Speaker 2: They're like, so we're gonna take her into surgery right
5:52
Speaker 2: away and do an X lab and see what we
5:56
Speaker 2: see what's going on. She's like, I'm worried about mount rotation,
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Speaker 2: I'm worried about the purple. I'm worried about like any
6:03
Speaker 2: shrinkages or anything. And I was like, Okay, terrifying running
6:08
Speaker 2: on no sleep and that's yeah, not what you want
6:12
Speaker 2: to hear. But we're like, yeah, signed all the consent
6:15
Speaker 2: forms and they had her under general anesthesia just done,
6:20
Speaker 2: like she wasn't hardly moving or anything, and then she
6:23
Speaker 2: was wheeled back up. We got a text from their
6:26
Speaker 2: children's things saying that seargery is done, closing her up now,
6:29
Speaker 2: and then like we got a follow along that way,
6:33
Speaker 2: and then they brought her back up and they're like, well, no,
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Speaker 2: we didn't see any perforation. There was nothing. It all
6:39
Speaker 2: looked pretty good, but there was tons of maconium plugs,
6:43
Speaker 2: and so they're like, we kind of like got some
6:46
Speaker 2: flushed out from what we could, but we they wanted
6:50
Speaker 2: to do a rectal biopsy then too, but there was
6:53
Speaker 2: too much maconium so they couldn't even do a rectal biopsy.
6:56
Speaker 2: So like, we're just gonna let her heal up and
7:00
Speaker 2: and see if her intestines like wake up a little bit,
7:03
Speaker 2: because sometimes newborns just need a little bit of time
7:06
Speaker 2: for them to like wake up. And so she was
7:09
Speaker 2: like probably the biggest baby in the NIKU floor because
7:12
Speaker 2: she was a term baby. She's seven pounds and eleven
7:16
Speaker 2: ounces when she was born, so she never went under
7:19
Speaker 2: the seven pound mark, which is good. But yeah, they
7:22
Speaker 2: brought her back up and she was still out from
7:24
Speaker 2: the anesthesia and it was terrifying seeing her hooked up
7:28
Speaker 2: to the ventilator and all the ivs and everything and
7:32
Speaker 2: not even a two day old baby. But yeah, so
7:35
Speaker 2: then they just like let her wake up on her
7:38
Speaker 2: own for a little bit, and then they she was
7:41
Speaker 2: still in PO, so they switched her to TPAN and
7:43
Speaker 2: lipids and they put her a pick line in her leg.
7:49
Speaker 2: And so for about how I want to say, almost
7:51
Speaker 2: a week, she was just on the NPO and the lipids,
7:54
Speaker 2: and they were seeing it that she would like poop
7:56
Speaker 2: on her own at all, or like if she'd have
7:59
Speaker 2: any chain engine. We're like, okay, nothing's happening. But like
8:04
Speaker 2: her belly never got really distended or anything. So they
8:07
Speaker 2: were like, I don't know. They didn't do any more
8:10
Speaker 2: X rays or anything while that was going on, and
8:13
Speaker 2: then they ended up doing a reftal biopsy bedside, probably
8:20
Speaker 2: four days after the surgery, and then they're like, hey,
8:23
Speaker 2: you're gonna get your results in like four to five days,
8:25
Speaker 2: and I was like, we have to wait that long again,
8:28
Speaker 2: Like we've been here for so long. You know at
8:30
Speaker 2: this point, we're just like, we would just want to
8:32
Speaker 2: take our baby home, Like we have no idea what's
8:34
Speaker 2: going on. We'd never heard of hirshbums before, and they're like, yeah,
8:38
Speaker 2: we're just gonna look for this, like hirshbrums disease. So
8:41
Speaker 2: then we went and you know, dove into the Google
8:45
Speaker 2: deep dive and that said, you know, one in five
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Speaker 2: thousand kids, mostly in boys, like sometimes mostly hereditary, and
8:54
Speaker 2: we're like, there's no way, like, our family has no
8:56
Speaker 2: history of this, no way, Nope. Yeah, it came back,
9:00
Speaker 2: but she was lacking the cells in her in the
9:04
Speaker 2: very bottom part of her rectum, and they're like, huh,
9:07
Speaker 2: all right, so what do we do from here? So
9:09
Speaker 2: then then we started irrigations while we were still in
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Speaker 2: the nickeu. We caught on how to do those pretty quickly,
9:15
Speaker 2: and then she ended up We started doing feeds by
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Speaker 2: the bottle and she was doing pretty good about those,
9:21
Speaker 2: but they weren't happy with the amount she was taking,
9:24
Speaker 2: so we put an NG tube in so we could
9:27
Speaker 2: see if her tummy would tolerate the amount of milk
9:30
Speaker 2: that they would like her to have and then see
9:33
Speaker 2: if like the irrigations would keep up with that amount
9:36
Speaker 2: of milk and her tummy, and so she did. She
9:39
Speaker 2: ended up doing pretty good. We were in the nique
9:41
Speaker 2: for eighteen days total and then we finally got to
9:44
Speaker 2: take her home. We did irrigations three times a day,
9:48
Speaker 2: and then they wanted her to get bigger and stronger
9:52
Speaker 2: before they did her pull through surgery and so, and
9:55
Speaker 2: they wanted her first X slap scar to heal, and
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Speaker 2: so they didn't run into any scar tissue while they
10:01
Speaker 2: were doing her pull through. And so about two and
10:04
Speaker 2: a half months old was when we went back to
10:06
Speaker 2: Children's and we did the pull through surgery and they
10:10
Speaker 2: ended up taking about twenty centimeters out right up next
10:13
Speaker 2: to her Sigamore Cohen is where the surgeon said that
10:17
Speaker 2: it was. And she's like, yeah, you could definitely tell
10:20
Speaker 2: it right where it ended too, because we got in
10:21
Speaker 2: there and the one the bad part was all super
10:24
Speaker 2: skinny and looked pretty dead and she's like, but Taylor,
10:27
Speaker 2: stuff looked really really like healthy and fleshy, and I
10:30
Speaker 2: was like, well, that's good. But yeah, they did did
10:34
Speaker 2: that pull through. They went in and they did like
10:36
Speaker 2: the biopsies all the way up to where it was
10:40
Speaker 2: healthy again during the pull through and then they're like, yeah,
10:44
Speaker 2: it'll probably be like another four to five days day
10:46
Speaker 2: when you guys have your pull through surgery. So that's
10:49
Speaker 2: what we had expected. And her pull through surgery was
10:52
Speaker 2: on a Thursday, and the next day she had already
10:56
Speaker 2: started like pooping by herself and like doing pretty good
11:00
Speaker 2: eating again, and so they're like, oh, she's doing really good,
11:03
Speaker 2: and I was like that's good, like I don't know,
11:05
Speaker 2: but then she started to get the diaper rash again
11:08
Speaker 2: and so we were battling that. But the next day,
11:11
Speaker 2: this Saturday, they're like, yeah, you guys can go home.
11:14
Speaker 2: And I was like, wait a minute, like what. My
11:16
Speaker 2: husband had gone home to work just because he was like, yeah,
11:19
Speaker 2: you guys are gonna be here till like Monday or Tuesday. Well,
11:21
Speaker 2: i'll come back and get you that day or whatever,
11:23
Speaker 2: and so I called him. I was like, they're sending
11:26
Speaker 2: us home early, like we gotta go home today, and
11:28
Speaker 2: he's like what. So he packed up and came and
11:31
Speaker 2: got us and then yeah. Our sergeant was like, okay,
11:36
Speaker 2: do you like cake? And I was like not really,
11:39
Speaker 2: and he's like, well, this is gonna be like frosting
11:42
Speaker 2: a cake on her bottom. She's like, just layer it on,
11:45
Speaker 2: and that's on one of the one things that I
11:47
Speaker 2: just remember distinctly him saying, if you like icing on
11:51
Speaker 2: a cake, just layer it on like your ice and
11:53
Speaker 2: a cake. When he's like, the less touching of the
11:56
Speaker 2: diaper and her bottom, the better, and I was like, okay,
11:59
Speaker 2: So yeah, we her diaper rash got pretty gnarly, but
12:03
Speaker 2: we ended up getting it figured out and got a
12:06
Speaker 2: cream that worked best for her bottom. And then she
12:10
Speaker 2: ended up, like when we had the NNG tube, she
12:12
Speaker 2: ended up ripping it out herself, and so luckily we
12:17
Speaker 2: like before we left the NIKU, they trained us how
12:19
Speaker 2: to place it and do all that, but she ended
12:22
Speaker 2: up taking her bottles by herself after that, her whole amount.
12:25
Speaker 2: So we're like, apparently she was just ready, so she
12:28
Speaker 2: ripped it out, and she'd been growing pretty good. She
12:31
Speaker 2: just stayed on breast milk, and then we had checkups
12:35
Speaker 2: like it seemed like every week. I don't think it
12:37
Speaker 2: was actually every week, but it seemed like every week,
12:40
Speaker 2: and we have to go clear two hours away do
12:42
Speaker 2: the children's hospital, and then we had some follow ups
12:45
Speaker 2: with the rural hospital ones too, so it just seemed
12:48
Speaker 2: like we were go, go go. But she did really
12:51
Speaker 2: good and she healed up pretty quick, and that was
12:54
Speaker 2: like June. June would have been when she had her
12:56
Speaker 2: pull through surgery and she was staying healthy, really good.
13:00
Speaker 2: And then August, last August, she got her first round
13:04
Speaker 2: of interpolitis yeah, and she had her tummy got pretty
13:09
Speaker 2: swoleen and we were like, oh, this is not good.
13:13
Speaker 2: Like she went downhill really fast like she had just
13:15
Speaker 2: started with like a little bit of split up, and
13:18
Speaker 2: then she just kept puking and kept puking and kept puking,
13:20
Speaker 2: and she just got like a tiny fever. It was
13:22
Speaker 2: pretty low grade, but I was like, this is yeah,
13:25
Speaker 2: she is not not doing well. And then she stopped cooping,
13:29
Speaker 2: so we're like, yep, we're going in. Like she checked
13:31
Speaker 2: too many boxes, so we took her in. And then
13:34
Speaker 2: she had another that was probably three four to day
13:37
Speaker 2: hospitals day and she had the ivy flagel, the fluids,
13:41
Speaker 2: the irrigations, the works, and she pulled through pretty quick
13:46
Speaker 2: and then we were doing good. And then last April
13:50
Speaker 2: she went through it again when she was puking and
13:52
Speaker 2: it was because she had rhyovirus and the human meta
13:58
Speaker 2: numa virus I think ended up knocking her out again
14:01
Speaker 2: and they were worried she was gonna get intercolitis again,
14:04
Speaker 2: so we stayed a couple more nights and then this
14:09
Speaker 2: a few weeks ago. This passed early August. Yep, she
14:14
Speaker 2: was puking again and it was the same thing. Rhinovirus
14:17
Speaker 2: knocked her again. But otherwise she's growing really good and
14:21
Speaker 2: walking around being crazy and sassy. But in her scars
14:26
Speaker 2: are still there. She's got one in her belly button,
14:28
Speaker 2: and then there's two little ones at the top two
14:32
Speaker 2: quadrants of her belly, and then one on the lower
14:34
Speaker 2: quadron of her belly, and then she's got her big
14:36
Speaker 2: scarf from her ex lap still but we call her
14:40
Speaker 2: battle wounds and hopefully she'll show them off with pride later.
14:43
Speaker 1: But see, yeah, definitely that's it's incredibly interesting story because
14:49
Speaker 1: it's not the typical know that there is really a
14:53
Speaker 1: typical hurt bunk story, but it's not. There's parts of
14:58
Speaker 1: it that are typical, the sort of the vomiting bile
15:01
Speaker 1: and all of that stuff, but the perforation of the
15:04
Speaker 1: bowt it is something I've I've not I've only heard
15:08
Speaker 1: a couple of times before, and did they sort of
15:11
Speaker 1: give a reason as to why was it just basically
15:14
Speaker 1: too full or.
15:15
Speaker 2: Was there I think so. I think that they thought
15:18
Speaker 2: they saw on the contrasts enema that some of the
15:22
Speaker 2: contrasts was like leaking into her abdomen, and I think
15:25
Speaker 2: that's what they thought. They're like, well, you just want
15:27
Speaker 2: to get her in And I was like, okay, it's
15:29
Speaker 2: just a honor intestines all little like sew it up
15:32
Speaker 2: and all good to go. Yeah, Nope, not at all.
15:35
Speaker 2: But yeah, it was crazy.
15:37
Speaker 1: Yeah, most definitely. And it's something that again I haven't
15:42
Speaker 1: heard very often, but he's definitely a warning sign that
15:45
Speaker 1: they do give you that, you know, if things do
15:48
Speaker 1: get too full, then it might you know, certain things
15:51
Speaker 1: might pop and burst and all all that stuff. Yeah,
15:56
Speaker 1: And it's interesting when you because Hirschbruns wasn't obviously meant
16:00
Speaker 1: straight away because they've got to do all sorts of stuff.
16:02
Speaker 1: And then and then when they do mention it, some
16:06
Speaker 1: hospitals say, oh, don't google it because they don't want
16:09
Speaker 1: to scare you, and some hospitals sort of leave you
16:13
Speaker 1: to do to do whatever. But I think you had
16:17
Speaker 1: the same reaction as a lot of people do where
16:19
Speaker 1: they go, Yeah, but it's one in five thousand. Yeah,
16:22
Speaker 1: that's yeah, and especially as you have a daughter as well,
16:25
Speaker 1: you know, it's I think again nobody knows for exactly certain.
16:29
Speaker 1: They're roughly one in five thousand. Roughly three out of
16:32
Speaker 1: every four are boys. So and to have you know,
16:38
Speaker 1: no family history as well, the chance I mean you
16:42
Speaker 1: probably sat there and thought, yeah, I mean it's the
16:45
Speaker 1: same symptoms, but there's no way.
16:48
Speaker 2: Really. Yeah, it was crazy, yeah, but yeah, when we
16:52
Speaker 2: got sent to Children's when she was first born, they
16:56
Speaker 2: just consider it maconium ilias. That's all. They had it
16:59
Speaker 2: label las. And so we're like, what, like you said,
17:02
Speaker 2: we will like maconium ilias and you know, like causes
17:06
Speaker 2: of this, and we're like, well, this big word came up,
17:09
Speaker 2: but there's no way. And then you know, it says
17:12
Speaker 2: that sometimes it's linked to like more common and people
17:15
Speaker 2: with like down syndrome or something like that, and we're like, well,
17:18
Speaker 2: that's weird. But she got like the sweat test for
17:21
Speaker 2: cystic fibrosis too, because she had the maconium ilias. And
17:25
Speaker 2: I guess in Nebraska they say you're supposed to get
17:28
Speaker 2: them tested for cystic fibrosis if they have maconium ilius
17:33
Speaker 2: on their newborn screening. So I don't know, but that
17:35
Speaker 2: was negative too, So we're like, there's no like, what
17:38
Speaker 2: is this We don't Yeah, weird.
17:41
Speaker 1: That's interesting cystic fibrosies as well, because there's and I
17:45
Speaker 1: think I don't know whether that's a worldwide thing, because
17:48
Speaker 1: there's a few people that say, oh, they have their
17:51
Speaker 1: baby has had this test, and there's quite a few
17:54
Speaker 1: that don't. And I don't know whether it's certain hospitals
17:58
Speaker 1: or certain countries or or I don't know, but it
18:03
Speaker 1: doesn't seem to be a worldwide thing, and I think
18:06
Speaker 1: potentially it should because I guess at that stage, you
18:10
Speaker 1: just you want to rule everything out.
18:12
Speaker 2: Yeah for sure. Yeah, yeah, they Yeah. The sweat test
18:16
Speaker 2: was really weird too. It's just like a coil thing
18:17
Speaker 2: they put on her arm and then they just make
18:19
Speaker 2: it like a hot pack around it and then they
18:21
Speaker 2: can just test to see if she had cystic fibrosis
18:24
Speaker 2: through her sweat. And I was like that it's really weird.
18:26
Speaker 2: But yep, I came back negative too, and so we're like, yeah,
18:30
Speaker 2: we're gonna go ahead with the biopsy and get all
18:33
Speaker 2: that figured out, and we're like, okay, like I guess,
18:36
Speaker 2: and then she had pooped like by herself after the
18:40
Speaker 2: biopsy with more like maconium, and they're like, well, she's
18:43
Speaker 2: pooping on her own, so it's not like it's she
18:47
Speaker 2: just has to have the contestants wake up and help it.
18:51
Speaker 2: They just kept waiting and kept waiting, and they're like,
18:54
Speaker 2: she can, like sometimes it just takes a long time,
18:56
Speaker 2: and we're like, well, how long is too long? Like
18:59
Speaker 2: she has on like now like three or four days
19:01
Speaker 2: without actually pooping, without having like the biopsy, and we
19:07
Speaker 2: just got tired of waiting a lot of times they're like,
19:09
Speaker 2: we just want answers.
19:11
Speaker 1: Yeah, I think you exactly, Like a lot of people
19:14
Speaker 1: are also, and it's it's the unfortunate thing, especially when
19:18
Speaker 1: there's no hereditary heir sprungs. They almost go through everything
19:25
Speaker 1: else first and then say because because I don't know exactly,
19:32
Speaker 1: but I wonder whether it's potentially because the biopsy is
19:36
Speaker 1: so invasive, they don't necessarily want to go and do
19:42
Speaker 1: the biopcy unless they absolutely have to. I don't know.
19:47
Speaker 1: I don't know if they did they explain anything as
19:49
Speaker 1: to why, as long as it did.
19:52
Speaker 2: We wondered the same thing, and then we were like, well,
19:55
Speaker 2: maybe it's just because she had just had the X lap,
19:58
Speaker 2: So maybe that's why they were just waiting for things
20:00
Speaker 2: to heal a little bit more, because I mean, she
20:04
Speaker 2: was pretty like her incision was pretty bruce for a while,
20:07
Speaker 2: but they'd still come in and like cook around and
20:09
Speaker 2: make sure everything was still soft. But they never said
20:14
Speaker 2: why they didn't do the yops right away. But I
20:18
Speaker 2: don't know. That's what I would assume, but I'm not hepp.
20:21
Speaker 1: It's probably one of those things that's after the fact,
20:24
Speaker 1: isn't it. Now that you know a lot more about
20:27
Speaker 1: hirshprungs than you know about irrigations, and you know about
20:31
Speaker 1: what to look for, what what what's right and what's
20:35
Speaker 1: not right, it's kind of everything's probably seems a little
20:39
Speaker 1: bit more obvious and thinking well, of course she had hirshbruns.
20:42
Speaker 1: But at the time, why do is nastly Yeah, at
20:49
Speaker 1: the time, you're probably thinking, oh, it could be this,
20:51
Speaker 1: it could be that, it could be the other. But
20:52
Speaker 1: now you're going, well, of course it was hirshprungs. There
20:54
Speaker 1: was no you know, there's no reason as to she'showd
20:57
Speaker 1: a lot of the classic science with the bile and
21:01
Speaker 1: with the with the sort of not pass it, did
21:07
Speaker 1: you part not pass myconium.
21:09
Speaker 2: Now in our first few days of life?
21:11
Speaker 1: No, so yeah, and that ticks all the boxes or
21:18
Speaker 1: hirshbrugs it just does, I mean, so yeah. On they're
21:24
Speaker 1: probably looking back, you probably think, actually it was it
21:27
Speaker 1: was obvious, but at the time, but especially you know,
21:31
Speaker 1: especially when people say it's genetic, where it's there's a
21:37
Speaker 1: lot of schools of thought on that, and I don't know,
21:41
Speaker 1: I don't know how you think about it in terms
21:44
Speaker 1: of whether it's genetic. But I mean, I've met so
21:47
Speaker 1: many people who they have it and their children don't
21:51
Speaker 1: and they have this one and they and their brothers
21:54
Speaker 1: and sisters don't have it. I don't know, what have
21:56
Speaker 1: you done so many much digging into ethics and this
22:02
Speaker 1: that the other.
22:04
Speaker 2: No, we haven't done anything with our genetics. But I
22:07
Speaker 2: don't know. I don't know if like her case, would
22:10
Speaker 2: warrant it since we really have no no background of
22:15
Speaker 2: it at all, but we haven't. I meant to ask
22:18
Speaker 2: a few times, but it always just every time we
22:20
Speaker 2: go to a follow up, it always just faces my mind,
22:22
Speaker 2: and I'm like, well, I don't know. Maybe if we're
22:25
Speaker 2: another kid and the kid has it again, maybe then
22:27
Speaker 2: we should go and get some testing.
22:30
Speaker 1: Maybe. But then it's so it's so strange because I
22:35
Speaker 1: meet so many people who I mean, I've met somebody
22:38
Speaker 1: who has no Hirshprungs in the family, but her two
22:41
Speaker 1: sons too. And then I meet people who have no
22:44
Speaker 1: Hirshprungs in the family but one child does. I mean
22:48
Speaker 1: not my situation. I'm one of four, but I'm the
22:50
Speaker 1: only one who's got it, you know. And I was
22:52
Speaker 1: the second born, so it wasn't like I was the first.
22:55
Speaker 1: So that makes absolutely no sense whatsoever. No, So it's
23:01
Speaker 1: it's a minefield. And if anyone can come up with
23:03
Speaker 1: the answer, that would be amazing. On listening, can can
23:06
Speaker 1: say this that the other. But I want to touch well, Entracolitis.
23:11
Speaker 1: I know you you your daughters had three bouts of litis,
23:18
Speaker 1: which is obviously, you know, very very scary, very yes,
23:24
Speaker 1: And in terms of its probability, I think it's around
23:30
Speaker 1: I mean, it's a lot higher than I think. Certainly.
23:33
Speaker 1: I realized that they started about fifty of children born
23:37
Speaker 1: with hersprungs then contract some form of entracolitis. I don't
23:42
Speaker 1: know what what doctors. What did the doctors say to you?
23:46
Speaker 1: Was it kind of she's had the three bouts and
23:48
Speaker 1: then they are sort of just seeing how she goes
23:52
Speaker 1: or is it sort of looking for signs or how
23:55
Speaker 1: how's that sort of working at the moment.
23:57
Speaker 2: Yeah, So when we got discharged from her pull through
24:01
Speaker 2: surgery is when they really started like pounding us about
24:05
Speaker 2: look for these signs. And like I joined the her
24:08
Speaker 2: sprung Spacebook group and like I joined that right away,
24:14
Speaker 2: right when I figure out that she had her sprungs.
24:16
Speaker 2: I was like, I want to learn everything, so I
24:18
Speaker 2: just like immersed myself in it. And a lot of
24:21
Speaker 2: it was intercolitis, intercolised intercolitis. So then I was like,
24:25
Speaker 2: look for these signs the dispension, the vomiting, the fever,
24:29
Speaker 2: the lethargy, the like grogginess, last appetite, all of that.
24:34
Speaker 2: So I was like, Okay, we're gonna make a note
24:37
Speaker 2: of these all the time. And so that's what they
24:39
Speaker 2: reiterated to us after her pull through because from her
24:43
Speaker 2: like when we were just doing the irrigations daily, like
24:46
Speaker 2: it seemed like she didn't hardly get stick out all.
24:48
Speaker 2: She was doing really good. We just kept everything moving.
24:51
Speaker 2: It was going really good. And then she started getting
24:54
Speaker 2: some trap gas like more often. And this was about
24:57
Speaker 2: a week or two before her first battle of inter politis,
25:00
Speaker 2: and so I was like, maybe this is just because
25:02
Speaker 2: she's like growing, and I don't know, sometimes that happens,
25:06
Speaker 2: and so I just kept monitoring it and kept monitoring it,
25:09
Speaker 2: and then I would like reach out to her surgery
25:12
Speaker 2: team and I was like, this is what's been going on.
25:15
Speaker 2: They're like just monitor if she gets worse, like let
25:19
Speaker 2: us know. And then she started puking, and I was like, well,
25:22
Speaker 2: I don't know if it's spit up or like puke,
25:25
Speaker 2: because at that point it was just a little bit.
25:27
Speaker 2: And like she had had a running nose, and every
25:29
Speaker 2: time that she gets a running nose, it seems like
25:32
Speaker 2: it just triggers her and she just pukes a lot
25:35
Speaker 2: with it. And she just has so much extra like
25:38
Speaker 2: mucus in her system, and like her irrigations would always
25:42
Speaker 2: get like really mucasy too if she had a running nose.
25:45
Speaker 2: And so they were like, okay, she's puking, like she
25:48
Speaker 2: gets a fever. She stops pooping, bring her in. I
25:51
Speaker 2: was like, okay, and she did both of those things,
25:54
Speaker 2: and so the first route, the first bout was the worst.
25:57
Speaker 2: That was the worst, but she's had it Like when
25:59
Speaker 2: she was she was puking like the night before, but
26:03
Speaker 2: it was just small amounts and it just seemed like
26:05
Speaker 2: spit up and she was still drinking a bottle and
26:07
Speaker 2: so we're like, they're just like, just monitor and then
26:09
Speaker 2: the next morning she was still kind of not herself,
26:13
Speaker 2: but a little better. And then about lunchtime hit and
26:17
Speaker 2: she just puked and pukeed and puked. And at this time,
26:20
Speaker 2: I had an in home daycare, so I was like
26:22
Speaker 2: calling the family that was like, Hey, we're gonna have
26:24
Speaker 2: to take Loretta into Children's because she just won't stop
26:29
Speaker 2: puking and they want us to bring her in. So
26:31
Speaker 2: you guys got to come pick up your kids. And
26:34
Speaker 2: they're like okay. So my husband stayed with the daycare
26:38
Speaker 2: kids and his mom came with me to Children's so
26:43
Speaker 2: I could make sure she didn't like asp right on
26:45
Speaker 2: any of her vomit. And then that's when it turned.
26:47
Speaker 2: The vial was in the two hour car ride there,
26:50
Speaker 2: and so I was like oh yeah, we are staying
26:53
Speaker 2: like that is bur sure admitted to the hospital and
26:56
Speaker 2: like her tummy was getting pretty bloated and it seemed,
26:59
Speaker 2: I don't know, it seemed like a toad that's been
27:01
Speaker 2: in water too long. That's how I always seemed like,
27:04
Speaker 2: that's how I always gauge for belly, if it's too bloated,
27:07
Speaker 2: if it looks like a toad that's been in water
27:08
Speaker 2: too long. And so they checked her out x ray,
27:13
Speaker 2: and when they laid her down to do X ray,
27:14
Speaker 2: she started kuching again. And I was like, yeah, we
27:17
Speaker 2: are for sure staying and they're like, yeah, she's really full,
27:20
Speaker 2: like where we're getting her in, We're going to do
27:24
Speaker 2: the ivy antibiotics, We're going to do irrigations and all
27:27
Speaker 2: of that. I was like, okay, yeah, that's fine. And
27:29
Speaker 2: they're like, has she been sick? And I was like, well, yes,
27:31
Speaker 2: you go a running nose, but not anything that would
27:34
Speaker 2: make me think she's sick, like I don't know. But
27:37
Speaker 2: and then so she did really good after that, and
27:40
Speaker 2: she responded well to the ambiotics and the fluids and
27:44
Speaker 2: she was good and good and good, and they're like, yep,
27:46
Speaker 2: just keep monitoring, like just watch for the puking and
27:49
Speaker 2: all of that. And then that April came and she
27:52
Speaker 2: had had a running nose again, and so I had
27:54
Speaker 2: been we were actually in for her like whatever months
28:00
Speaker 2: follow up from her pull through surgery a week before
28:03
Speaker 2: she got it, and we had mentioned that she had
28:06
Speaker 2: a running nose and that she usually like doesn't tolerate
28:09
Speaker 2: the running nose very good and her body just doesn't
28:12
Speaker 2: like it. And they're like, hey, if she stops s
28:13
Speaker 2: pooping again, like let us know, and then if she
28:16
Speaker 2: pukes again, and she did. She started like she had
28:19
Speaker 2: a pretty good day, and then that evening she kind
28:21
Speaker 2: of started getting fussy and whatever. And then the next
28:25
Speaker 2: day I had messaged her team and I was like,
28:28
Speaker 2: she puked a few times through the night and like
28:31
Speaker 2: once this morning, but she hasn't puked since. And they're like, Okay,
28:34
Speaker 2: that's kind of alarming, but like keep monitoring it. I
28:36
Speaker 2: was like, well, can I take her to our local
28:39
Speaker 2: hospital and have her like x ray there and then
28:42
Speaker 2: just have them send the x ray to U so
28:44
Speaker 2: we don't have to drive two hours if it's nothing.
28:46
Speaker 2: And they're like, yeah, we could do that, and then
28:48
Speaker 2: so on the way there, to the local hospital. She
28:51
Speaker 2: had star puking again, and I was like, oh, yeah, nope,
28:55
Speaker 2: this is not good. So we went and got the
28:57
Speaker 2: x ray and then I didn't hear anything back from
28:59
Speaker 2: UNTILL or from our local hospital about what the results were.
29:03
Speaker 2: I was like, uh, guys, like what's going on. And
29:06
Speaker 2: they're like, yeah, we can't really read the like it's
29:09
Speaker 2: not a clear picture from what we got from your
29:13
Speaker 2: local hospital. So and I was like, well, she's puking again,
29:16
Speaker 2: so I'm just gonna pack up and head that way.
29:19
Speaker 2: And we ended up missing like clinic time by like
29:21
Speaker 2: thirty minutes, so we had to go through the ear
29:24
Speaker 2: and we were in the er for like five or
29:26
Speaker 2: six hours while she was just puking and puking and puking,
29:30
Speaker 2: and they finally got us admitted and into a room
29:32
Speaker 2: and it was the same thing. They suspected, intercolitis, and
29:36
Speaker 2: then she had rhinovirus and the metaanuma virus and they're like, yeah,
29:40
Speaker 2: that's probably what caused it. Like that happens a lot
29:43
Speaker 2: with these kiddos, And this time we were only in
29:46
Speaker 2: the hospital for two nights and she responded well again,
29:51
Speaker 2: and then we just do the seven days of Flagle
29:54
Speaker 2: at home following up with Orally, and they're like, as
29:57
Speaker 2: long as she continues eating afterwards, Lynd just like goes
30:00
Speaker 2: back to her normal pooping and stuff, you're good to go.
30:04
Speaker 2: I was like, okay. And then this past August was
30:07
Speaker 2: the same thing. She had a running nose the week before,
30:10
Speaker 2: and then the following week she was fine all day
30:15
Speaker 2: and then it hit like supper time, refuse supper, which
30:17
Speaker 2: is not like her. She likes her food, and so
30:20
Speaker 2: we're like, oh, that's weird, like why don't you want
30:22
Speaker 2: to eat? But maybe she was just too tired, and
30:25
Speaker 2: so she like choked her milk, and then she ended
30:28
Speaker 2: up puking all over me, and I was like, oh,
30:30
Speaker 2: maybe you just drink your milk too fast, Like you've
30:32
Speaker 2: been fine all day, no fever, no nothing. And then
30:36
Speaker 2: she turned around and we went and washed her up
30:40
Speaker 2: and washed myself up, and we got in the shower,
30:42
Speaker 2: and then when we got back out, dressed in our
30:45
Speaker 2: jammies ready to get ready to go to bed, puked
30:47
Speaker 2: again all over me, and I was like, oh no,
30:50
Speaker 2: like this is not good. And then she just kept puking.
30:53
Speaker 2: Every time she'd move. She would just like dry heave
30:55
Speaker 2: and puke and I was like, no, we're not even
30:58
Speaker 2: trying this time. It was like eleven something at night.
31:01
Speaker 2: I was like, we're going, We're going straight down mahaf
31:04
Speaker 2: like and so we did. They inmitted us and she
31:07
Speaker 2: hadn't puked since we left our house, so they're like, oh,
31:11
Speaker 2: it's last time she puked or whatever, and I was like, well,
31:13
Speaker 2: it's probably about eleven. But it was a lot, like
31:16
Speaker 2: she puked a lot and then it had turned like
31:19
Speaker 2: a dark brownish color and we're like, nope, nope, we
31:22
Speaker 2: don't like that. And she like every time she gets
31:26
Speaker 2: like topuke and like that is she just looks like
31:28
Speaker 2: she goes limp and she just looks like her eyes
31:31
Speaker 2: just say like help me, Like I don't know, it's
31:34
Speaker 2: just the look. And then it seems like every single
31:37
Speaker 2: time that she gets that look, we just know like
31:40
Speaker 2: she needs help. And so we went in and she
31:43
Speaker 2: had rhinovirus again and then an interro virus, and so
31:48
Speaker 2: they did the same thing fluids, antibiotics, but we only
31:52
Speaker 2: had to stay there from like that night into that day.
31:55
Speaker 2: We got released like in the afternoon because she resk
31:58
Speaker 2: wonded super quickly we caught us, but really, and so yeah,
32:02
Speaker 2: that's pretty much what they told us is just to
32:04
Speaker 2: keep monitoring and hopefully like as she gets bigger and
32:08
Speaker 2: she's better about like releasing her coop all the time,
32:12
Speaker 2: and she just hopefully will grow out of the intercolitis
32:17
Speaker 2: gipping it so much. But hopefully we'll see hopefully her
32:20
Speaker 2: immune system gets a little better because she seems to
32:23
Speaker 2: catch everything.
32:25
Speaker 1: Yeah, it does seem to be that that cut away
32:28
Speaker 1: at the moment. And it's I guess as well, with
32:32
Speaker 1: having hirshprungs, we probably more susceptible. I don't know necessary,
32:37
Speaker 1: does it does? It does seem to be the pr Yeah,
32:42
Speaker 1: it does seem to be that we are a little
32:44
Speaker 1: bit more susceptible to bugs and viruses and and all
32:50
Speaker 1: sorts of stuff. Really, and then when it affects us,
32:53
Speaker 1: it really affects us. I think that's that's the other
32:56
Speaker 1: thing as well, I think, isn't that Yeah.
33:00
Speaker 2: Yeah, she from nothing to needed to go to Omaha
33:04
Speaker 2: in like two hours maybe like she goes down quick
33:07
Speaker 2: when she gets it.
33:08
Speaker 1: Yeah, most definitely. And that's and that's yeah, and I
33:12
Speaker 1: guess as well, from parental points of view, it's obviously
33:18
Speaker 1: just kind of sort of learn as you go and
33:21
Speaker 1: you kind of pick up cues I guess in terms
33:25
Speaker 1: of you know, this has happened, or you know, her
33:29
Speaker 1: tummy looks like this, or maybe like you said, she
33:32
Speaker 1: wasn't she wasn't eating anything right, something's something's wrong, and
33:37
Speaker 1: I guess it's it's one of those now that you
33:39
Speaker 1: you kind of yeah, seven seventeen months in you kind
33:42
Speaker 1: of you felt as though you can now sort of
33:47
Speaker 1: tell cues really really quickly.
33:50
Speaker 2: Oh yeah, and.
33:53
Speaker 1: Just kind of yeah and just sort of say, well,
33:55
Speaker 1: this has happened. So we're off to Omaha again.
34:00
Speaker 2: Right, pack your perry colan and really it.
34:04
Speaker 1: Being obviously a couple of hours away, that's a fair
34:07
Speaker 1: old drive. And obviously the do you I guess suppose
34:13
Speaker 1: we answered this a little bit earlier, But are there
34:16
Speaker 1: times do you think, actually, I'll take it to the
34:17
Speaker 1: local hospital or is it most of the time always
34:22
Speaker 1: to Omaha?
34:24
Speaker 2: I think most of the time, like I just think
34:26
Speaker 2: straight to Omaha because like her surgery teams there they
34:30
Speaker 2: know like what they're looking for, they're looking for like
34:33
Speaker 2: all the Hirshprung cues, Like when we go to the
34:35
Speaker 2: er and they admits. I was like, Okay, she's been
34:38
Speaker 2: puking history of Hirst runs and they're like hirsh RUMs
34:41
Speaker 2: right away, like they they're like red flag. And I
34:44
Speaker 2: was like, yup. And so usually we always get admitted,
34:46
Speaker 2: and I'm just I don't know. I feel like our
34:49
Speaker 2: doctor at our local hospital is really really good, and
34:53
Speaker 2: I think that we probably could work with her and
34:56
Speaker 2: children to like get what she needs there, especially now,
35:00
Speaker 2: like I know what she needs. I know she needs fluids,
35:02
Speaker 2: and I know she needs flagil through her ivy, like
35:06
Speaker 2: that's what gets it going right away, like jump starts
35:08
Speaker 2: her and then we can do the oral flagel and
35:11
Speaker 2: she does really good with it. She responds, well, but
35:14
Speaker 2: I'm always scared of the but what if this is worse?
35:17
Speaker 2: And then I want her to be with her surgery
35:20
Speaker 2: team so they can know like what it all like.
35:23
Speaker 2: The last time that we got admitted, they're like, well,
35:26
Speaker 2: we're kind of worried about like when kiddos with this
35:29
Speaker 2: have like the intestine surgery, that they're susceptible to the
35:33
Speaker 2: interception or whatever when it gets like sucks back in.
35:37
Speaker 2: And so that was the first time we had heard
35:39
Speaker 2: of that too. And they're like, we want to do
35:42
Speaker 2: a ultrasound on her too, to see if it's done
35:48
Speaker 2: that And I was like, well, that's the first time
35:49
Speaker 2: they've done that too. Usually it's just X rays and
35:51
Speaker 2: so yeah, the last time she got X rays and
35:54
Speaker 2: ultrasounds okay, and she and all the testing and stuff,
36:04
Speaker 2: and so yeah, that was new for us. But I
36:07
Speaker 2: was like, I mean, that's I guess I'm always learning
36:11
Speaker 2: about more things that could happen with them. But yeah,
36:15
Speaker 2: it's it's been crazy.
36:18
Speaker 1: Yeah, definitely. And for audio listeners, Loretta has just joined us.
36:21
Speaker 1: Hello Loretta, she sigh on earth? Is this strange guy
36:29
Speaker 1: on the screens? I've never seen it before. We are
36:33
Speaker 1: talking about you, by the way, Loretta. Just just so
36:36
Speaker 1: you know, in terms of future as well, I know
36:47
Speaker 1: it's very difficult to predict with her sprungs and you
36:51
Speaker 1: never know quite what's quite around the corner. And obviously
36:54
Speaker 1: I hope for everything being absolutely fine, But in terms
36:57
Speaker 1: of future things like both of medical and non medical,
37:03
Speaker 1: what do you see for Loretta's future?
37:08
Speaker 2: Well, hopefully pretty good. We uh, We're down to like
37:12
Speaker 2: every six months we go in for her surgery hollow
37:15
Speaker 2: ups and they just do like just another X ray
37:20
Speaker 2: and make sure everything's still healing good and everything. And
37:23
Speaker 2: after her pull through like well, when they finished up
37:26
Speaker 2: that procedure, they did get her photos in section and
37:32
Speaker 2: she hasn't had to have any follow ups with that,
37:34
Speaker 2: but that was one thing that they mentioned that we'll
37:37
Speaker 2: wash for if she like slows on her pooping or anything,
37:39
Speaker 2: she starts having problems, we can do another bhotox injection.
37:42
Speaker 2: But she's done pretty good with that. Hopefully we'll do
37:47
Speaker 2: I think our next hurdle will be the potty training
37:52
Speaker 2: or that's not gone so well with other people, but
37:55
Speaker 2: I'm hopeful that she's doing pretty good that we'll be
37:58
Speaker 2: able to do that pretty good. She just can't have
38:00
Speaker 2: couts milk. That's the only thing that we found dietary
38:05
Speaker 2: wise that she can't. It's pretty bound that. So we
38:07
Speaker 2: just do plant based milk and she does's fine with that. Yeah,
38:13
Speaker 2: but others hopefully pretty normal.
38:20
Speaker 1: I think that you're right with I think when it
38:22
Speaker 1: comes to potty trading, especially in this face face with groups,
38:26
Speaker 1: I know they're a bit of a mixed bag. The
38:28
Speaker 1: Facebook groups, there's some some some people can write the
38:31
Speaker 1: worst case scenarios. Some people get right, you know, everything's
38:35
Speaker 1: going really really well. I suppose for most people they
38:38
Speaker 1: don't necessarily go on those groups if everything's going great,
38:42
Speaker 1: if you see what I mean, Yeah, they do tend
38:45
Speaker 1: to write, you know, this is terrible, this is bad,
38:47
Speaker 1: this is and I guess if you spend if you're
38:51
Speaker 1: quite new to it and everything, it possibly can scare
38:55
Speaker 1: you witless a little bit and you think, oh no,
38:58
Speaker 1: everything is just going to be dreadful and horrible, and
39:01
Speaker 1: you know, yeah, I think, yeah, it's one of those
39:03
Speaker 1: is possibly the worst case scenario. Yeah, but yeah, no,
39:08
Speaker 1: that that's that's really good to hear, especially every six
39:11
Speaker 1: months as well. That that sounds obviously the further away
39:16
Speaker 1: time they wanted to see her, that's the better, I guess.
39:19
Speaker 2: Yep. But she seemed to manage to fill in those
39:22
Speaker 2: of the actual's hospitals days, haven't you. Yeah, But yeah,
39:26
Speaker 2: it's been pretty good. She's done all things considered, she's
39:30
Speaker 2: done pretty good, excellent.
39:32
Speaker 1: That's really really good to hear. It's see if they're saying,
39:36
Speaker 1: you know, I want to see you every month or
39:37
Speaker 1: every two weeks, you think not boruck, but every every
39:42
Speaker 1: every sort of six weeks, six six months is yeah,
39:47
Speaker 1: is excellent news. And I guess you're probably starting the
39:50
Speaker 1: whole walking, walking, walking stage as well, running olaver right, yeah, yeah, excellent.
39:58
Speaker 1: Oh well, that's fantastic and I just want to say
40:01
Speaker 1: thank you so so much for joining me. It has
40:04
Speaker 1: been such an interesting story and I wish, obviously you
40:11
Speaker 1: and and Loretta and your whole family just the very
40:14
Speaker 1: best for what's to come in the future, both sort
40:17
Speaker 1: of medically and it's obviously trying to touch would stay
40:20
Speaker 1: out of hospital as much as possible then term. And yeah,
40:24
Speaker 1: just just for for everything else, the party, trading in
40:27
Speaker 1: the and the walking stages. Yes, thank you, thanks so much.
40:32
Speaker 2: Thanks for having us you see it, bye oh bye.
40:41
Speaker 1: Thank you for listening and being part of this growing community.
40:44
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
40:47
Speaker 1: leave a review, and share it with someone who might
40:50
Speaker 1: need it. You can connect with us on social media
40:53
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirsprung's Podcast.
40:58
Speaker 1: See you next week.