Latest / Tom's Hirschsprung's Podcast / Episode 109 - With Emily Arner

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Episode 109 - With Emily Arner · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung'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.
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Speaker 2: Hello, and welcome to episode one hundred and nine of
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Speaker 2: Tom's Hirshprungs Podcast. I am delighted this afternoon to be
0:54
Speaker 2: joined by Emily Jet. Emily, welcome to the podcast.
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Speaker 3: Thank you so much for having me. I'm so excited
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Speaker 3: to be here and talk about this journey.
1:02
Speaker 2: Yeah, and talk about this this very rare disease. Yes, Yes,
1:07
Speaker 2: thank you so much for coming on. Now, you have
1:10
Speaker 2: a son with hirshprungs, and I guess we're going to
1:14
Speaker 2: talk a little bit, possibly maybe less about the whole
1:18
Speaker 2: medical side of it and more a little bit about
1:20
Speaker 2: sort of maintaining healthy lifestyle and and whatnot. And it's
1:27
Speaker 2: I'm really fascinated to hear this story because again, I
1:31
Speaker 2: feel like we've been speaking a little bit about I
1:35
Speaker 2: hear all sides of the spectrum, and this is sort
1:38
Speaker 2: of potentially sort of the lower side of the spectrum.
1:42
Speaker 2: But we'll we will, we will see how we get on.
1:45
Speaker 2: But yet kind of up to you from where you
1:47
Speaker 2: where you want to begin the journey.
1:50
Speaker 3: So yeah, I'd love to start with So, first of all,
1:53
Speaker 3: he's a twin, he's a twin sister, and I we
2:00
Speaker 3: he was. They were you know, born, no complications, no issues,
2:04
Speaker 3: and we did not realize that there was anything wrong
2:09
Speaker 3: for a couple of months now. And I say that
2:14
Speaker 3: in the hospital. You know, generally when babies are born,
2:17
Speaker 3: they generally poop right away, and he did not, and
2:22
Speaker 3: his sister did and he did not, and the nurses
2:27
Speaker 3: and doctors kind of went, oh, it gets he probably
2:29
Speaker 3: has a what is it called a Marconian plug, right, Like,
2:34
Speaker 3: it's probably just plugged up. It happens, you have a big deal.
2:38
Speaker 3: So I think the day, I think it was the
2:40
Speaker 3: day after they were born, maybe twenty four hours or so,
2:43
Speaker 3: after the doctor had come in and had like manually
2:50
Speaker 3: kind of gotten the what we thought was the plug out,
2:53
Speaker 3: and he pooped and they were like, okay, no big
2:57
Speaker 3: you know, you're you're fine, You're you're fine, take them home,
3:01
Speaker 3: you know, no no issues. So we did and we
3:07
Speaker 3: you know, again, so having twins, uh, it's it's a lot.
3:11
Speaker 3: You're very sleep deprived. You just it's kind of you're constant.
3:15
Speaker 3: You're kind of in this like haze of just getting
3:20
Speaker 3: through surviving those for a few months with two babies.
3:25
Speaker 3: And so we we kind of had we kind of
3:29
Speaker 3: realized kind of maybe a month maybe they were about
3:34
Speaker 3: a month old, that we realized that there was this
3:37
Speaker 3: kind of cycle where you know, his and it was
3:40
Speaker 3: easy for us because he had a twin sister, so
3:42
Speaker 3: there was a comparison where we could see that, you know,
3:44
Speaker 3: she's pooping every day like infants normally do, and he
3:49
Speaker 3: was not. He would generally go for five days. So
3:58
Speaker 3: so we you know, kind of got into this cycle
4:00
Speaker 3: with him where we realized that he was going three,
4:03
Speaker 3: four or five days without pooping, and he would but
4:08
Speaker 3: he would he would eventually poop, and then he would
4:11
Speaker 3: just be the happiest baby. He was. He was just great,
4:15
Speaker 3: like smiley and happy, and but then we would get today,
4:20
Speaker 3: three four, five, and he would be absolutely miserable. You know,
4:26
Speaker 3: his stomach would be descended and he would just be fussy,
4:29
Speaker 3: and you know, we tried all the things with you know,
4:34
Speaker 3: moving their legs to try and get thinking it was
4:36
Speaker 3: gas and trying to you know, get the gas out,
4:38
Speaker 3: and but he is so and then we started to
4:43
Speaker 3: think maybe he's colicky, and like, you know, we just
4:47
Speaker 3: but then he but then he would poop and he
4:48
Speaker 3: and he would be totally fine. So we kind of
4:51
Speaker 3: let it go because we're like, well, I like, it's
4:54
Speaker 3: it's we didn't know anything about Hirschbrungs didn't know anything
4:59
Speaker 3: about I mean, and once again with twins, we're so
5:02
Speaker 3: preoccupied with just surviving at that point that we didn't
5:08
Speaker 3: really have the mental capacity to do a whole bunch
5:11
Speaker 3: of looking into like what might be going on, and
5:14
Speaker 3: you know, it was just kind of trying to survive
5:16
Speaker 3: the day to day. So we just kind of dealt
5:18
Speaker 3: with it and didn't think all that much of it.
5:23
Speaker 3: I remember having conversations about it, and my husband and
5:26
Speaker 3: I talking about it and going, it's it is kind
5:29
Speaker 3: of weird because again, his twin sister in comparison is
5:32
Speaker 3: is pooping every day and he's not okay, So maybe
5:37
Speaker 3: it's just his baby, that's just his spot, like maybe
5:40
Speaker 3: that's just normal for him, like like we don't know,
5:43
Speaker 3: you know, and we didn't didn't really think much about
5:49
Speaker 3: it till I think it was his three month checkup
5:54
Speaker 3: with a three month checkup for both of them, and
5:58
Speaker 3: we had just kind of mentioned it to the nutrition
6:00
Speaker 3: and said, I you know, like between the two, like
6:03
Speaker 3: there's this noticeable difference and when he's pooping and when
6:07
Speaker 3: she's pooping and kind of their normal cycles for that,
6:12
Speaker 3: and the pediatrician kind of like immediately all of a
6:14
Speaker 3: sudden said like hang on, like that's not that's not
6:19
Speaker 3: normal for a three month old to only be going
6:22
Speaker 3: every four five, you know, like days, Like that's not
6:28
Speaker 3: that's that's not what it should be. So she immediately
6:32
Speaker 3: had us get she wanted us to get into a
6:35
Speaker 3: GI specialist, and she was able to pull some strings
6:38
Speaker 3: and get us in very quickly to you know, the
6:42
Speaker 3: GI specialist, especially at children's hospitals, usually can take a
6:46
Speaker 3: very long time to get in. She was able to
6:49
Speaker 3: pull some strings and I think it was like a
6:51
Speaker 3: week later that we were able to get in and
6:55
Speaker 3: went and saw them and I don't remember like the
7:00
Speaker 3: sacked timeline, but saw them and I think they might
7:05
Speaker 3: have said they might have mentioned hirshprungs kind of pretty
7:11
Speaker 3: early on. I don't remember for sure, but I know
7:14
Speaker 3: that they, like, you know, right away said no, we
7:16
Speaker 3: need to do some more testing and figure out what's
7:19
Speaker 3: going on. So, you know, they had us scheduled. They
7:24
Speaker 3: scheduled us pretty quickly for a biopsy. Don't. My husband
7:30
Speaker 3: remembers like all the dates in the timeline better than
7:32
Speaker 3: I do, because once again, it's all it just it
7:35
Speaker 3: kind of all blends together with that point three or
7:38
Speaker 3: four month old twins. So I so, but I know
7:43
Speaker 3: that they did. They they did the biopsy, and as
7:47
Speaker 3: soon as the biopsy came back, they said, no, he
7:50
Speaker 3: has he has hirshprungs and explain to us what that
7:54
Speaker 3: is and why that explained his normal like cycle and
8:01
Speaker 3: why he was only whooping every you know, like why
8:05
Speaker 3: because his you know, his body literally can't get it
8:08
Speaker 3: out and so, you know, I mean, that's kind of
8:13
Speaker 3: a big shock when you're like, you know, in every
8:17
Speaker 3: other lady, he's like this, He's a totally normal, happy
8:20
Speaker 3: baby until he gets to the point where it's uncomfortable
8:24
Speaker 3: and it hurts, and you know, so as soon as
8:29
Speaker 3: they did the biopsy. They said, yeah, no, we need
8:31
Speaker 3: to schedule him for surgery, and they I remember the
8:35
Speaker 3: GI specialist being really upset that the doctor in the
8:40
Speaker 3: hospital and they were born didn't catch it, especially because
8:45
Speaker 3: he because they did have to do that you know,
8:47
Speaker 3: manual merconium plug you know thing and and that, and
8:57
Speaker 3: because they were twins because I C section. We I
9:01
Speaker 3: think we were in the hospital for like three days
9:02
Speaker 3: when they were born. And the GI specialst kind of said,
9:06
Speaker 3: how did they not notice that he hadn't hooped again
9:10
Speaker 3: like he should have He should have gone again before
9:13
Speaker 3: you guys left the hospital, and that it was really
9:18
Speaker 3: the just the GI specials was kind of irritated that
9:22
Speaker 3: the doctor didn't hatch that there was something going on,
9:26
Speaker 3: and that you know that we had been kind of
9:29
Speaker 3: living with this for three months and that Leo had
9:32
Speaker 3: been living with it for three months without us realizing
9:35
Speaker 3: that there was something wrong, so all all that. So yeah,
9:43
Speaker 3: so they basically then immediately said, Okay, We're going to
9:46
Speaker 3: get him in for surgery as soon as possible. We
9:48
Speaker 3: can't can't let this go, like, we need to get
9:51
Speaker 3: him in as soon as possible. So I ended up
9:56
Speaker 3: scheduling the surgery for the week before Christmas, so he
9:59
Speaker 3: was like five months old at that point. So he
10:04
Speaker 3: and I were in the hospital for about I think
10:08
Speaker 3: it was about five days that we were in the hospital.
10:10
Speaker 3: So they did. His surgery went really really well. They
10:14
Speaker 3: ended up resecting seven inches of his bowel and then
10:19
Speaker 3: they did the botox shot to help with you know,
10:23
Speaker 3: just to help loosen everything up. So you know, it
10:29
Speaker 3: was it was he was young enough. He obviously doesn't
10:33
Speaker 3: remember that. I doesn't. You know, it was fairly traumatic
10:36
Speaker 3: for me because you know, I'm in the hospital for
10:39
Speaker 3: five days and he's and of course he could, you know,
10:41
Speaker 3: after because of what it is. He couldn't eat for
10:46
Speaker 3: they wouldn't let him have anything to eat, and I
10:50
Speaker 3: and barely drink. I think he had an ivy, so
10:54
Speaker 3: I think that's how he was getting fluids. You know,
10:56
Speaker 3: he couldn't eat anything. It was like the third day
10:59
Speaker 3: after surgery, before or they let him eat, and the
11:02
Speaker 3: poor kid was just you know, he's five months old,
11:05
Speaker 3: Like he doesn't he's old enough to be laying there
11:09
Speaker 3: with his head up, you know, propped up on his
11:11
Speaker 3: arms with his head up and looking at me. And
11:14
Speaker 3: crying and miserable. Like I just remember it just being
11:18
Speaker 3: absolutely heartbreaking for me because I couldn't there was nothing
11:23
Speaker 3: I could do. I just wanted to feed him so
11:27
Speaker 3: badly and I couldn't. They wouldn't let me, obviously, And
11:33
Speaker 3: I just remember that that when the doctor did finally
11:38
Speaker 3: come in and cleared him to eat, was just this.
11:42
Speaker 3: I mean, I just remember crying and just like being
11:45
Speaker 3: so relieved that I could finally give him some food
11:47
Speaker 3: because he was just so unhappy. And then you know,
11:53
Speaker 3: and then so yeah, I think we were there from
11:55
Speaker 3: there two days after that, just too for observation to
11:58
Speaker 3: make sure that he was okay and that that he
12:02
Speaker 3: was able to poop, and he did. He was I
12:08
Speaker 3: think at that point because of the botox shot it.
12:13
Speaker 3: I think he was kind of pooping kind of all
12:16
Speaker 3: the time. And so they were very happy with that,
12:19
Speaker 3: and they were like, all right, like he's you know,
12:21
Speaker 3: after five days, he's he's you're good to take him home.
12:25
Speaker 3: And really that was kind of the end of our
12:32
Speaker 3: issues until recently. So he you know, we you know,
12:39
Speaker 3: had follow ups and he was he was fine, he
12:42
Speaker 3: was we I mean, he was having no issues whatsoever.
12:45
Speaker 3: He was he's still kind of always was more like
12:51
Speaker 3: every other day that he would poop instead of like
12:55
Speaker 3: every day. It was still a little bit longer timeline
12:59
Speaker 3: in between compared to his sister. And but you know,
13:04
Speaker 3: the follow ups, the doctor people like that's fine as
13:06
Speaker 3: long as it's like every other day, like that's you know,
13:08
Speaker 3: we're good with that. That's you know, that's fine. So
13:13
Speaker 3: you know, so at this point he is five and
13:15
Speaker 3: a half. So we went from you know, five months
13:18
Speaker 3: old from the surgery to kind of then much more
13:23
Speaker 3: recently where he's you know, as he got older and
13:28
Speaker 3: we got potty trained, the daily aspect of it has
13:35
Speaker 3: kind of always been an issue just in we kind
13:41
Speaker 3: of have to force him to go sit on the potty.
13:44
Speaker 3: Like once he once we got to potty training, and
13:49
Speaker 3: like we could we would tell that he you know,
13:51
Speaker 3: he would start his stomach was start to get extended,
13:53
Speaker 3: and we have to go, Okay, we have to we
13:55
Speaker 3: have to go. We have to go sit with you.
13:56
Speaker 3: We will come sit with you in the bathroom and
13:59
Speaker 3: sit with you, U yu, sit on the potty and
14:01
Speaker 3: try to go. And you know, he had a lot
14:05
Speaker 3: of resistance to that. He didn't want to do that
14:11
Speaker 3: because again, at like three and four, he doesn't understand,
14:15
Speaker 3: like he doesn't understand what is going on. So it
14:20
Speaker 3: was a lot of so while it felt very normal,
14:24
Speaker 3: it didn't feel necessarily like we had this giant thing
14:28
Speaker 3: that we were dealing with all the time. We did
14:30
Speaker 3: kind of have a fairly consistent just we need to
14:34
Speaker 3: kind of help him and coach him and get him
14:36
Speaker 3: to sit on the potting trick because we can tell
14:38
Speaker 3: he hasn't pooped in two days, like he needs to go,
14:43
Speaker 3: and he just he kind of can't tell when he
14:48
Speaker 3: needs to. So kind of now at five, now we
14:55
Speaker 3: can we can tell him, okay, get your get your tablet,
14:58
Speaker 3: or get your switch, or go get something and just
15:01
Speaker 3: go sit and try. And almost every single time he
15:04
Speaker 3: will poop immediately like he will he will, he will
15:08
Speaker 3: go right away the second he tries, he goes. It's
15:11
Speaker 3: just the fact that we kind of have to force
15:14
Speaker 3: him to go try instead of him he just still
15:20
Speaker 3: can't doesn't recognize when he needs to. So that's kind
15:29
Speaker 3: of our daily life with it is. It's really not
15:32
Speaker 3: all that big of a deal other than the fact
15:37
Speaker 3: that we do have to just be very kind of
15:39
Speaker 3: conscious and pay attention to when was this? The conversation
15:43
Speaker 3: with my husband and I have all the time that
15:45
Speaker 3: like it. We laugh about the fact that like half
15:47
Speaker 3: of our conversation is about pooping, and you know, when
15:49
Speaker 3: was the last time he pooped? We need to pay
15:52
Speaker 3: attention to that. Okay, it was two days ago, all right,
15:54
Speaker 3: we need to like have him, we need to kind
15:57
Speaker 3: of make him go sit and tried. So yeah, So
16:04
Speaker 3: really just no major issues until this summer. God, I
16:14
Speaker 3: can't even think of what it was now, but it
16:16
Speaker 3: was this summer. Oh, I think it was no. Actually
16:20
Speaker 3: at the summer, it was October and in September he
16:25
Speaker 3: through throughout the whole month he kind of wasn't acting normal.
16:31
Speaker 3: He was complaining about his stomach hurting all the time,
16:34
Speaker 3: his stomach was really distended. But then but then he
16:38
Speaker 3: would poop, so we would We were like, uh, you know,
16:43
Speaker 3: it doesn't necessarily seem anything out of the normal as
16:47
Speaker 3: far as as far as his normal, Like he's still pooping,
16:51
Speaker 3: we're not. We're not. He's not constipated, so he's still going.
16:58
Speaker 3: But but something was off off and we had a
17:02
Speaker 3: lot going along. We were in the middle of packing
17:04
Speaker 3: to move to a new house, and we just kind
17:09
Speaker 3: of kept like brushing it off, and we're like, I like,
17:13
Speaker 3: we're not again. We kind of didn't know what we
17:17
Speaker 3: didn't know. So we had had like we'd had many
17:21
Speaker 3: we'd had multiple conversations about the fact that his stomach
17:24
Speaker 3: was really descended, and we we like it was. We
17:27
Speaker 3: were a little we were definitely worried about it, but
17:29
Speaker 3: we had all this other stuff going on, and then
17:32
Speaker 3: he would boop, so we're like, oh, he must be
17:35
Speaker 3: it must be okay. And finally we got to a
17:39
Speaker 3: point and we got to October and we like he
17:45
Speaker 3: had we had had a couple of days in a
17:47
Speaker 3: row where he was really complaining of us stomach and
17:53
Speaker 3: oh and I think and it was it was even
17:55
Speaker 3: like worse than that where he had started. What really
17:58
Speaker 3: like triggered us was that he had started to run
18:01
Speaker 3: a fever. All of a sudden. The school had called
18:05
Speaker 3: and they said, he's running a fever and he's kind
18:07
Speaker 3: of really not acting right and we're not quite sure,
18:11
Speaker 3: like he's running a fever, so you got to come
18:13
Speaker 3: pick him up, and so we did, and he just
18:16
Speaker 3: was really really lethargic and not not just not acting
18:27
Speaker 3: him like himself, Like we picked him up and he
18:29
Speaker 3: immediately fell asleep on the couch and it like it
18:34
Speaker 3: didn't like he just we couldn't couldn't keep him awake anyway.
18:38
Speaker 3: It was like all this, you know, he just was
18:39
Speaker 3: not acting like himself. It was clearly something going on,
18:42
Speaker 3: and we finally said, okay, I like it was like
18:45
Speaker 3: the second day of him kind of acting like this
18:47
Speaker 3: morning a fever, and we're like, all right, We're we're
18:49
Speaker 3: going to take him to Children's because something is clearly
18:53
Speaker 3: off and wrong. And so we did told him about
18:58
Speaker 3: his hirsch rungs by his surgery when he was five
19:01
Speaker 3: months old, and they, you know, they right away like
19:06
Speaker 3: his I mean, his stomach was really distended. It was
19:08
Speaker 3: really hard. And so my husband had taken him when
19:11
Speaker 3: I stayed home with our daughter, and they did X
19:19
Speaker 3: rays and his entire intestines were ballooned up to the
19:25
Speaker 3: point where they were worried that he was like they
19:28
Speaker 3: were going to burst, like they kind of at that
19:31
Speaker 3: point they were saying, we think we might have to
19:33
Speaker 3: take him into surgery like tonight right away because it
19:38
Speaker 3: just his his entire intestinal track was like just all
19:42
Speaker 3: ballooned up. I mean, like it was really you know,
19:46
Speaker 3: my husband called me and he said, this is like
19:48
Speaker 3: really bad, Like this is there there. The nurses and
19:52
Speaker 3: the doctors are like really concerned about this, and like
19:56
Speaker 3: they're they're kind of talking about the fact that like
20:00
Speaker 3: he might go into like emergency surgery and you know,
20:03
Speaker 3: all this, and so they I ended up calling a friend.
20:09
Speaker 3: She came and stayed with my daughter so I could
20:11
Speaker 3: get to the hospital as well. So while I was
20:15
Speaker 3: on my way there, they started doing the sailine flush
20:20
Speaker 3: where they were what do they call it, where they
20:23
Speaker 3: you know, put We call it the magic Yeah. Yeah,
20:28
Speaker 3: so we call it. We call it the magic water
20:30
Speaker 3: because that's that way. It makes him feel better. That's
20:33
Speaker 3: that's it's the magic water. It helps it helps him
20:39
Speaker 3: feel better, So it's magic water. So they had started
20:42
Speaker 3: doing irrigation, that's the that's the word that they use.
20:45
Speaker 3: It was the irrigations. They had started doing irrigations in
20:49
Speaker 3: the emergency room, and they were getting a lot of
20:54
Speaker 3: poop out, like a lot. I mean, it was just
20:55
Speaker 3: kind of con that we're getting a ton out and
20:58
Speaker 3: they were like, all right, well we're gonna we're going
21:00
Speaker 3: to keep doing this and see if his and if
21:04
Speaker 3: the if like that swelling of his intestine starts to
21:08
Speaker 3: go down and we can kind of figure out what's
21:11
Speaker 3: going on. So kind of long story short, you know,
21:15
Speaker 3: they did that right away. They were like, we're gonna
21:18
Speaker 3: admit him, and we're gonna get one of the g
21:22
Speaker 3: I pediatric GI doctors to come see him first thing
21:28
Speaker 3: in the morning. And so kind of throughout that night
21:31
Speaker 3: they did the they did the flush, the wash out
21:34
Speaker 3: and the trying to get you know, and it just
21:38
Speaker 3: was this concetant. I mean it was it was so
21:40
Speaker 3: much that they were getting out and his belly started
21:44
Speaker 3: to look a lot smaller, started to look a lot,
21:47
Speaker 3: it was getting softer, and but he was still very
21:54
Speaker 3: He still was running a fever. They were they were
21:56
Speaker 3: really worried about that. So I guess the next day
21:59
Speaker 3: they did a buch of testing. Didn't even realize that
22:00
Speaker 3: they had done all of these, but they started doing
22:04
Speaker 3: that was trying to figure out what was causing the
22:06
Speaker 3: fever and why he was so because because in one
22:09
Speaker 3: of the things that they had said that night in
22:11
Speaker 3: the emergency room was they had said, we think that
22:14
Speaker 3: it's he's got a blockage. That that's why everything is
22:18
Speaker 3: so swollen and distended, is because we think he's got
22:22
Speaker 3: a blockage somewhere in there. But there was so much
22:24
Speaker 3: they couldn't even see on the x ray. They couldn't
22:27
Speaker 3: even see like they they were like, we can't even
22:29
Speaker 3: tell because it's just so swollen. So that was they
22:34
Speaker 3: were like, we need to get as much of it
22:36
Speaker 3: out as we can to figure out where the blockage
22:37
Speaker 3: is so that we can get all the you know,
22:40
Speaker 3: get get that out. And so the the the next
22:45
Speaker 3: day that the next day, they you know, they were
22:48
Speaker 3: doing them. They were doing extras pretty regularly to kind
22:50
Speaker 3: of see where it where he was, and and like
22:53
Speaker 3: how like what it looked like. And they got to
22:56
Speaker 3: the point where the swelling had come down enough and
22:58
Speaker 3: they were like, there's no blockage there. There's no there's
23:01
Speaker 3: nothing blocking him. So we're not quite sure why he
23:04
Speaker 3: has not been able to go and why this is like,
23:08
Speaker 3: you know, as backed up as as he is. And
23:14
Speaker 3: they finally started running a bunch of tests to figure
23:17
Speaker 3: out kind of what was causing all this, and we
23:21
Speaker 3: found were they realized that he had salmonilla. We had
23:27
Speaker 3: we have no idea I mean they kind of they
23:30
Speaker 3: kind of said he could have gotten it from anywhere.
23:33
Speaker 3: And the problem with hirshprungs is because their intestinal track
23:38
Speaker 3: moves so much slower than you know, somebody without hirshprungs,
23:43
Speaker 3: that the salmonilla basically just sat in his gut and
23:47
Speaker 3: just the bacteria multiplied and and got it just it
23:52
Speaker 3: grew a lot faster and a lot worse than it
23:56
Speaker 3: would somebody without hirshrungs, because normal, you know, I mean,
24:00
Speaker 3: for the rest of us, we eat something, we get
24:03
Speaker 3: salmonilla and probably don't even realize it. We just get
24:05
Speaker 3: a little bit of an upset stomach, and our bodies
24:07
Speaker 3: are able to flush it out, you know, quickly enough
24:11
Speaker 3: that it never becomes like a big thing, which I
24:15
Speaker 3: didn't realize. I didn't realize that we probably get it
24:18
Speaker 3: like all the time. Maybe not all the time, but
24:21
Speaker 3: we as a you know, as as adults, and as
24:23
Speaker 3: somebody without her springs, we probably get it way more
24:27
Speaker 3: than we realize it. Just our body is able to
24:29
Speaker 3: get rid of it, so it doesn't ever become a thing.
24:32
Speaker 3: Whereas for him, because it because of this just the
24:38
Speaker 3: slower speed that there, you know, Bowels move at intestines,
24:42
Speaker 3: move it. It just it became this really big thing
24:48
Speaker 3: where it was like, you know, it got its dangerous
24:52
Speaker 3: and he they couldn't get his fever down. They were
24:56
Speaker 3: you know, they they were doing then the irrigations like
24:59
Speaker 3: a couple of times a day, which was just horrible
25:04
Speaker 3: and not fun because at five and five and a half,
25:07
Speaker 3: he did not he does not did not doesn't like him,
25:09
Speaker 3: which again which is why we called him magic Water,
25:12
Speaker 3: because that was at least a little bit like, you know,
25:15
Speaker 3: he was a little bit better with Okay, it's the
25:17
Speaker 3: magic Water. And I will say that our the doctors
25:20
Speaker 3: and all of the nurses we had at Children's Phoenix
25:24
Speaker 3: were absolutely fantastic, Like they were so so great and
25:30
Speaker 3: they are, especially the gi doctor. She would come in
25:35
Speaker 3: and she would sit down and talk to him and
25:37
Speaker 3: explain what she was going to do and and you know,
25:41
Speaker 3: and it really made him more He still didn't want
25:46
Speaker 3: to do it, but it made him a little bit
25:49
Speaker 3: more comfortable where he at least he trusted her and
25:54
Speaker 3: he let us, he let us do it, so you know,
25:57
Speaker 3: so those were those were kind of a battle. Every
26:00
Speaker 3: time doing that multiple times a day was just you know,
26:04
Speaker 3: and as a as a mom, it was heartbreaking and
26:07
Speaker 3: I hated, you know, because it just he just he
26:10
Speaker 3: would cry and he didn't what they didn't like it,
26:14
Speaker 3: and you know, because it's not because we because we
26:19
Speaker 3: haven't had any issues with it since he was a newborn.
26:23
Speaker 3: We haven't had to do those you know where you know,
26:25
Speaker 3: they had given us the whole kid, the irrigation kid
26:28
Speaker 3: and the tubes and like all of that and had
26:31
Speaker 3: you know, sent us home with all of that when
26:32
Speaker 3: he was little. We've never had to do it because
26:35
Speaker 3: he just hasn't had any issues. So having to do
26:38
Speaker 3: it now at five five and a half was very
26:43
Speaker 3: traumatic and it you know, it just it it was
26:47
Speaker 3: it's not something he's used to doing. So it was
26:49
Speaker 3: very it was very it was hard, but we got
26:53
Speaker 3: through it. And and that's kind of what they said
26:55
Speaker 3: that because it was salmonilla, they just they had to
26:58
Speaker 3: continue to do those irrigations and rinse out as much
27:01
Speaker 3: of his intestines as they possibly could and continue to
27:05
Speaker 3: rent it out to help get all of that bacteria
27:08
Speaker 3: out of there. And uh so, yeah, so that so
27:14
Speaker 3: it it ended up it worked really well. You know,
27:18
Speaker 3: he did not have to have surgery, which is what
27:20
Speaker 3: they were you know, we were concerned with kind of
27:22
Speaker 3: the first couple of days, they were still concerned they
27:24
Speaker 3: were going to have to do surgery, and so we're
27:27
Speaker 3: really thankful that they didn't have to that just the
27:30
Speaker 3: irrigation was enough to to clean everything out. So we
27:37
Speaker 3: ended up being in the hospital again at that time
27:40
Speaker 3: for five days, and you know, it was it was
27:45
Speaker 3: it's hard because he because of the salmonilla, he was
27:48
Speaker 3: on I can't think what they call it, but protocols
27:54
Speaker 3: where he wasn't allowed to leave his room and when
27:56
Speaker 3: anybody came, when the nurses came in, they had to
27:58
Speaker 3: put on the full like protective gear, not like just
28:02
Speaker 3: the masks and gloves, and you know, because because they
28:07
Speaker 3: wanted to make sure that we didn't he didn't spread
28:10
Speaker 3: semonil to anybody else, obviously, so he but it was
28:14
Speaker 3: hard because he couldn't leave his room and he was
28:16
Speaker 3: stuck in there, and he you know, by the time,
28:19
Speaker 3: by like the third or third third day, he was
28:23
Speaker 3: feeling better. He was feeling you know, his his stomach
28:26
Speaker 3: was feeling better. He was kind of feeling he was
28:29
Speaker 3: much more back to his normal happy self. They brought
28:33
Speaker 3: in like a video game system for him to play,
28:36
Speaker 3: and they were great. They brought him he's a big
28:39
Speaker 3: Spider Man fans that they brought him like Spider Man
28:41
Speaker 3: toys and they had all sorts of like games that
28:44
Speaker 3: they were kind of doing in his room to keep
28:47
Speaker 3: him occupied and keep him from kind of going store crazy.
28:53
Speaker 3: But it was still at that, you know, by he
28:55
Speaker 3: started feeling better and then he wanted to eat. Oh,
28:58
Speaker 3: and so that was the other thing was kind of
28:59
Speaker 3: with this episode is that he was not he wasn't
29:03
Speaker 3: really eating. The probably week before we took him to
29:07
Speaker 3: the hospital, he wasn't really eating, like he would take
29:11
Speaker 3: a bite and be like I'm full, like I don't
29:13
Speaker 3: want any And then once we realized what was going on,
29:15
Speaker 3: and we were like, oh, that makes sense why he's
29:17
Speaker 3: not eating because his he there's no room in his
29:20
Speaker 3: intestine for food, so he so he hadn't really eaten.
29:27
Speaker 3: By the time he started to feel better, he really
29:30
Speaker 3: hadn't eaten much in about two weeks, and he like
29:33
Speaker 3: he had lost he'd lost weight, like he was looking
29:36
Speaker 3: very like his face looked very skinny. And but you know,
29:40
Speaker 3: especially where you see him every day, like you don't
29:43
Speaker 3: necessarily notice it. It's not like this big, huge shock
29:49
Speaker 3: thing because you see him every day. But then I
29:52
Speaker 3: had while we were in a hospital in past kind
29:54
Speaker 3: of he was sleeping and I was just looking through
29:57
Speaker 3: old photos and I was looking for photos from just
29:58
Speaker 3: a couple of weeks ago, and I was like, oh,
30:00
Speaker 3: my gosh, like a huge difference in in just you know,
30:04
Speaker 3: he's always kind of had a little bit rounder, kind
30:06
Speaker 3: of babyface, and it like it it was he had
30:09
Speaker 3: he had lost quite a bit of weight and was
30:11
Speaker 3: super skinny. So he he started feeling better and just
30:17
Speaker 3: desperately wanted to eat, like I mean, he was begging
30:19
Speaker 3: us for food. And then doctors were like, we need
30:22
Speaker 3: to wait to make sure that we are like totally
30:25
Speaker 3: cleared out before we introduce food in there again. And
30:31
Speaker 3: so it was finally yeah, So they finally did finally
30:34
Speaker 3: clear him and they said, okay, you can have clear
30:36
Speaker 3: fluids and you know, like jello and gatorade and that
30:41
Speaker 3: sort of stuff, and he just i mean devoured it
30:45
Speaker 3: and then wanted more. And so you know, then we
30:49
Speaker 3: got to the end of the point where they were
30:50
Speaker 3: like whatever, whatever the next step of foods was. But
30:55
Speaker 3: you know, pretty simple things. And he and he was fine,
30:59
Speaker 3: like he I mean he literally every single thing that
31:03
Speaker 3: they brought into the room, he he ate all of
31:06
Speaker 3: it and and was but like his he was not.
31:09
Speaker 3: He wasn't getting distended again, his stomach wasn't hurting. He was,
31:13
Speaker 3: you know fine. So that was the that was the
31:15
Speaker 3: at that point that actually was like all right, like
31:17
Speaker 3: probably one more day and we think he's probably good
31:20
Speaker 3: to go home. I think we've gotten all of it
31:23
Speaker 3: and and he's okay, so we did so yeah, so
31:27
Speaker 3: five days and and and you know again, uh, you know,
31:34
Speaker 3: just a hospital stay with a child like that is
31:38
Speaker 3: it's it's difficult because they just they don't understand, and
31:40
Speaker 3: they don't you can't really explain it to them why
31:46
Speaker 3: why we're having to do this and and why they
31:49
Speaker 3: can't why you can't leave your room, and why you
31:52
Speaker 3: can't you know, see your sister. And I That was
31:55
Speaker 3: you know, another that was a very difficult thing was
31:58
Speaker 3: having a twin sister. They've never been apart other than
32:01
Speaker 3: his two hospital stays surgery and then this one. And
32:05
Speaker 3: obviously the surgery was five months old, like he didn't
32:07
Speaker 3: they you know, they couldn't communicate with whatever, Like they
32:10
Speaker 3: didn't no big deal then, but now you know, five
32:15
Speaker 3: they he really it was a lot of like I
32:17
Speaker 3: missed my sister and why can't my sister? And we
32:19
Speaker 3: did bring her up a couple of times, they brought
32:21
Speaker 3: her up to come see him, because she of course
32:24
Speaker 3: wanted to see like where he was and kind of
32:28
Speaker 3: understand what was going on. And but you know, she
32:31
Speaker 3: you know, we couldn't obviously, she couldn't spend the night
32:33
Speaker 3: she had to and you know, it's hard trying to
32:36
Speaker 3: then manage two five year olds in a hotel, in
32:38
Speaker 3: a hospital room where we can't leave the room and
32:41
Speaker 3: there's only so much to do, and so you know,
32:44
Speaker 3: like her visiting was kind of short, you know, like
32:47
Speaker 3: hour hour and a half and we're like okay, but
32:50
Speaker 3: we needed Biggy home and and you know, so that
32:54
Speaker 3: was that made it kind of extra difficult, just because
33:00
Speaker 3: it was a life from both of them. It was why,
33:02
Speaker 3: you know, I miss my miss my brother, I missed
33:04
Speaker 3: my sister, Like why why can't why can't they be
33:07
Speaker 3: here with me? And you know, it was it was
33:10
Speaker 3: tough that part of it. Yeah.
33:13
Speaker 2: Uh so, yeah, I mean that is for a for
33:19
Speaker 2: a normal story, a lot has happened set They almost
33:24
Speaker 2: thinking this would be like a ten minute story and
33:27
Speaker 2: there's a lot that's happened. But I think, yeah, potentially
33:30
Speaker 2: one of those where you kind of when you lay
33:32
Speaker 2: it all out and maybe maybe at the time we
33:35
Speaker 2: kind of think, O, well, not a lot's happening, But
33:37
Speaker 2: actually when the hospital stay and the salmonella and kind
33:41
Speaker 2: of lay everything out, it's actually quite a lot.
33:44
Speaker 3: Isn't it. It is? It is, and it was it
33:47
Speaker 3: was definitely the you know, it was definitely a lot.
33:52
Speaker 3: And you know, like I said, we were kind of
33:53
Speaker 3: in the middle of moving as well, so we had
33:55
Speaker 3: all of this other stress going on, and then he
33:58
Speaker 3: gets sick and we're in hospital, and it was it
34:01
Speaker 3: was a very I mean that there was a good
34:04
Speaker 3: two weeks there where it was just like kind of
34:09
Speaker 3: losing my mind, like stress and like anxiety levels just
34:13
Speaker 3: through the roof because it was it was like every
34:16
Speaker 3: kind of minute was like what's going to happen now?
34:19
Speaker 3: And but at the same time, you know, by the
34:23
Speaker 3: time he started getting better and you know, we kind
34:25
Speaker 3: of got through it and got him home. It we
34:30
Speaker 3: kind of looked at it and went, you know, we're
34:33
Speaker 3: we're so glad we took him when we did and
34:36
Speaker 3: that didn't get to the point that his bowel rupture,
34:38
Speaker 3: because obviously that would have been like cataclysmic, I mean,
34:43
Speaker 3: so much worse. So we're we're really glad that we
34:45
Speaker 3: took him to the hospital when we did, and they
34:47
Speaker 3: were able to kind of figure out what was going
34:48
Speaker 3: on fairly quickly and start getting in some relief. But
34:53
Speaker 3: you know, when we look back at you know, five years,
34:57
Speaker 3: over five years we've had you know, two two major things,
35:01
Speaker 3: the surgery and then the salmonilla. So you know, I
35:04
Speaker 3: guess I feel like it it really is not it's
35:10
Speaker 3: it's not that it's not that much compared to the
35:12
Speaker 3: amount of time that we've had where he has been
35:16
Speaker 3: healthy and fine and you know where we don't have
35:21
Speaker 3: we're not having major issues with it and we're not
35:23
Speaker 3: having to do the magic water all the time. And
35:26
Speaker 3: you know, now at this point, he he does we
35:29
Speaker 3: like I said, we tell him to go go sit
35:31
Speaker 3: on the potty and oh and they did do they
35:34
Speaker 3: did the boatok shot again while we were in the hospital.
35:37
Speaker 3: They did do the boatok shot again, and we they
35:42
Speaker 3: they kind of said that they think we need to
35:44
Speaker 3: start doing it regularly, so you know, every whatever six
35:49
Speaker 3: six months or so. I think we already have our
35:52
Speaker 3: appointment scheduled for the next follow up with the with
35:56
Speaker 3: them to kind of determine if we need to do
35:58
Speaker 3: it again. But they did say that at this point,
36:01
Speaker 3: like we do need to because we didn't. We weren't
36:03
Speaker 3: doing that regularly. We hadn't done it since the surgery
36:07
Speaker 3: because he was because he was fine. We didn't weren't
36:10
Speaker 3: there was we kind of didn't there didn't feel like
36:13
Speaker 3: there was a reason to do it. And but now
36:16
Speaker 3: after this episode, the g I specialists were like, yeah,
36:20
Speaker 3: like you need to you need to start We need
36:22
Speaker 3: to start doing it regularly. They've put him in the
36:26
Speaker 3: They do have a Hirshbrung's.
36:31
Speaker 4: Uh like group at at Children's what is the word
36:40
Speaker 4: I'm looking for where they essentially where they just when
36:42
Speaker 4: they follow them throughout their life to kind of watch
36:44
Speaker 4: what happens and like essentially research.
36:48
Speaker 3: So they've put him into that to kind of, yah,
36:53
Speaker 3: keep track of his progress and how he's doing and all,
36:57
Speaker 3: you know, all of that. So again, this Children's has
37:01
Speaker 3: just been absolutely fantastic. They did such a great job
37:06
Speaker 3: with his We actually ended up for his surgery when
37:09
Speaker 3: he was five months old. We were in uh, Cincinnati, Ohio,
37:13
Speaker 3: and we kind of are thankful we were there when
37:18
Speaker 3: when we had to do the surgery because we found
37:20
Speaker 3: out that kind of one of the number one doctors
37:24
Speaker 3: the surgeons is and I totally can't remember a name,
37:32
Speaker 3: but but and I can't even remember. I think it's
37:36
Speaker 3: a I think it was a I think it's a woman,
37:38
Speaker 3: can't even remember for sure, but anyway, I think it
37:40
Speaker 3: was a woman that she she's like the one, she's
37:44
Speaker 3: like one of the top first prongs like surgeons in
37:50
Speaker 3: the country. And we were we were very so we
37:53
Speaker 3: were very fortunate because we probably would have ended up
37:56
Speaker 3: being sent there anyways, and we just happened to have
37:59
Speaker 3: been living there at the time. So we kind of
38:02
Speaker 3: say it was like a just I think we were
38:06
Speaker 3: meant to be there because we were meant to be
38:08
Speaker 3: living there at the time, because we were able to.
38:12
Speaker 3: We were able because it is so rare and you know,
38:16
Speaker 3: you don't have a ton of doctors that do this regularly,
38:20
Speaker 3: and we just we we ended up having access to
38:23
Speaker 3: a doctor who who does and does this regularly and
38:26
Speaker 3: deals with Hirschbranks all the time. So we were really
38:30
Speaker 3: fortunate that that for the surgery that that was the case.
38:36
Speaker 3: But then now that we're in Phoenix, Yeah, Children's Phoenix
38:38
Speaker 3: has just been amazing. And I think our journey forward
38:46
Speaker 3: if we start doing the boat talk shots regularly and
38:50
Speaker 3: just kind of keeping I think now after this salmonell episode,
38:54
Speaker 3: I think we are kind of hyper aware of even
39:00
Speaker 3: we were aware of his kind of normal pooping schedule
39:03
Speaker 3: and kind of like what he's eating and all that
39:07
Speaker 3: kind of stuff before, but I think now after this,
39:11
Speaker 3: like we are we are just hyper aware of you know,
39:15
Speaker 3: if because even just the other day my husband was like,
39:18
Speaker 3: I think his stomach looks a little extended, and we
39:20
Speaker 3: you know, felt his stomach. We're like, no, it's fine,
39:22
Speaker 3: but I think we're just we're so it was it
39:25
Speaker 3: was such, it was such, it was so dramatic the
39:28
Speaker 3: whole you know, salmonella that I think we're we're just
39:30
Speaker 3: we're very we're just paying very close attention to like
39:34
Speaker 3: every little thing with him, and you know, is he
39:38
Speaker 3: is he pooping every day or at least every other day,
39:40
Speaker 3: and you know, making sure that he's eating you know,
39:44
Speaker 3: things like yogurt and getting some of the good you know,
39:49
Speaker 3: probiotics and that sort of stuff to make sure that
39:53
Speaker 3: we don't go through that again. I mean, now, if
39:55
Speaker 3: he gets semonilla get like that's there's not much you
39:58
Speaker 3: can do, like happens, But but catching it earlier on,
40:03
Speaker 3: I think is kind of we're much more aware of that.
40:08
Speaker 3: And kind of one of the things that they did
40:10
Speaker 3: tell us is that, you know, kind of any time
40:14
Speaker 3: he's gets sick, is running a fever, kind of any
40:18
Speaker 3: kind of illness, whether it's even just like a cold
40:21
Speaker 3: or anything, and slowed down there intestinal track even more
40:27
Speaker 3: than it than it already is and then can cause
40:30
Speaker 3: additional problems. So even something as simple as a cold
40:33
Speaker 3: can kind of set off an episode of you know,
40:36
Speaker 3: having an issue. So that was good, Like I didn't
40:39
Speaker 3: I didn't just we didn't realize that, and because again
40:42
Speaker 3: it hasn't happened.
40:43
Speaker 2: In the past, a lot of why would you, Yeah,
40:45
Speaker 2: you know, it's like you said before, you don't know
40:48
Speaker 2: what you don't know. And I think sometimes and I know,
40:51
Speaker 2: you know, especially people around my age who maybe don't
40:54
Speaker 2: have Hushbrung's issues or think about it too much. Maybe
40:59
Speaker 2: I don't know if place it's the right word, but
41:01
Speaker 2: like you kind of think, oh, well, everything's been fine
41:05
Speaker 2: for a number of years, and you know you and
41:08
Speaker 2: then something happens and it sort of snaps everything back
41:10
Speaker 2: into sort of oh wait, yes he does.
41:13
Speaker 3: Oh there is a thing that we have to pay
41:15
Speaker 3: attention to. Yeah, I know, that's exactly it is. I yes,
41:19
Speaker 3: it was kind of in this false, false sense of
41:22
Speaker 3: security because he's been fine and we haven't had any issues,
41:25
Speaker 3: and then all of a sudden, it's this issue and
41:27
Speaker 3: it's a big issue, and it's you know, like becomes
41:30
Speaker 3: this big, big thing that we were not pared for
41:34
Speaker 3: or didn't you know, it didn't didn't expect it to
41:37
Speaker 3: become as big of a thing as it was. So
41:40
Speaker 3: so yeah, so now I think we're we're just we
41:42
Speaker 3: do where we watch him very carefully and you know,
41:48
Speaker 3: kind of like I said before, he's now he's he's
41:50
Speaker 3: gotten to the age where now where it's really easy
41:53
Speaker 3: to say, Okay, it's time to go. You know, you
41:55
Speaker 3: need to to grab your tablet and go sit on
41:57
Speaker 3: the potty and try. And he's he doesn't he doesn't
42:01
Speaker 3: fight us like he does and then he poops immediately
42:03
Speaker 3: and and and he's signed. So that's so kind of
42:09
Speaker 3: you know, like managing helping support him and managing like
42:12
Speaker 3: we just have to be very aware. Okay, he pooped
42:15
Speaker 3: two days ago, after dinner, today, after dinner this evening,
42:21
Speaker 3: he's got to go sit and try it. Like we've
42:22
Speaker 3: got to make him. So it's just kind of us
42:28
Speaker 3: just paying attention to those things and making sure that
42:32
Speaker 3: we are we're we're doing those things too that you know,
42:38
Speaker 3: will prevent us having another major episode because nobody wants
42:43
Speaker 3: to go through that. It's not fun.
42:44
Speaker 2: No, but thank you so much for sharing this. I mean,
42:48
Speaker 2: I know he said, you know that there's there there's
42:52
Speaker 2: quite a lot to Hirshprungs, even though maybe it doesn't
42:57
Speaker 2: seem so much at the time. This is I mean
43:00
Speaker 2: to this story. This still I know you said you've
43:03
Speaker 2: sort of had you know, one hospital stay and and
43:06
Speaker 2: obviously initially born with Hirschbrun's diamosed after three or four months,
43:09
Speaker 2: but still an awful lot has happened in in his
43:13
Speaker 2: sort of five five and a bit years of life,
43:16
Speaker 2: which is which is amazing. But no, thank you so
43:21
Speaker 2: so so much for sharing Leo's story. And I know
43:26
Speaker 2: you said a little bit about what your sort of
43:28
Speaker 2: hopes are for the future or for Leo, for Leo's future,
43:33
Speaker 2: I don't even want to sort of expand on that
43:36
Speaker 2: a little bit.
43:38
Speaker 3: I think I think my I think my hope for
43:41
Speaker 3: him is that as he continues to get older, he
43:45
Speaker 3: kind of learns a little bit more. And I don't
43:48
Speaker 3: expect it to happen for you know, a couple more years,
43:51
Speaker 3: but that he kind of learns a little bit more
43:52
Speaker 3: about understanding his body and being kind of more aware,
43:58
Speaker 3: and he is aware that there's an that there is
44:01
Speaker 3: something kind of different with him than than his sister,
44:06
Speaker 3: and you know, like they'll we'll have conversations every once
44:08
Speaker 3: in a while, like where his sister will go, well,
44:10
Speaker 3: it's because you know, Leo's stomach gets up or Leo's
44:13
Speaker 3: I don't even I can't even think of what she says,
44:14
Speaker 3: but she'll say something about Leo's stomach, and you know,
44:19
Speaker 3: so he'll he'll say, yeah, it's it's like there's something
44:22
Speaker 3: wrong with my tummy, and we're like, there's not really
44:25
Speaker 3: something wrong. I mean it kind of, but you know,
44:28
Speaker 3: like how to explain that to a five year old
44:30
Speaker 3: so that he understands. So I kind of think my
44:33
Speaker 3: my goal and my hopes for him or just as
44:36
Speaker 3: he gets older that he kind of learns and we
44:41
Speaker 3: can teach him how to kind of manage this thing
44:46
Speaker 3: and how to be aware of if something is off
44:51
Speaker 3: with his stomach. That you know, if he's got an
44:53
Speaker 3: upset stom if his sister has an upset stomach, like
44:56
Speaker 3: it's not that big of a deal, but if he's
44:58
Speaker 3: got an upset stomach or his stomach really hurts like that,
45:00
Speaker 3: he needs to be able to say something and make
45:04
Speaker 3: sure he's telling us. And just that he can recognize
45:11
Speaker 3: as he gets old or recognize those kinds of things
45:14
Speaker 3: that might be a concern that we should kind of
45:19
Speaker 3: pay attention to and and go, is is this something
45:22
Speaker 3: or is it is it just you know, he ate
45:26
Speaker 3: something that upside the stomach. So that so that's my
45:29
Speaker 3: you know, I mean, I I like I said, we've
45:31
Speaker 3: got we've got to follow up. He yeah, So he
45:34
Speaker 3: had the botok shot in October. So I think we've
45:37
Speaker 3: got our fall up in the spring at some point
45:41
Speaker 3: to kind of decide if we're going to do it again.
45:43
Speaker 3: Like when we're going to do it again. So that's
45:48
Speaker 3: a little you know that that's a little I guess
45:52
Speaker 3: it gives me a little bit of anxiety just you know,
45:54
Speaker 3: thinking about this, like having to do these botox shots
45:57
Speaker 3: regularly and kind of keep up with that, so, you know,
46:04
Speaker 3: and he because again he's still he still doesn't recognize,
46:09
Speaker 3: he doesn't feel it when he needs to poop. We
46:12
Speaker 3: have to prompt him to go do it, and he will,
46:14
Speaker 3: but we have we still have to prompt him. So
46:16
Speaker 3: I really hope that he can get to the point
46:18
Speaker 3: where where he either learns to recognize it better or
46:25
Speaker 3: that he he kind of just knows I need, I
46:31
Speaker 3: need to go poop because I haven't pooped in two days,
46:33
Speaker 3: you know what I mean. Like, And I'm sure that
46:35
Speaker 3: will come as he gets older and we get you know,
46:37
Speaker 3: to older and more understanding and all that, he'll he will,
46:42
Speaker 3: I'm sure he'll get to that point. Just you know,
46:45
Speaker 3: we're not there yet because he's five.
46:46
Speaker 2: And that's yeah. But thank you so so much for
46:53
Speaker 2: coming on. And I wish you, Leo and and jehol
46:58
Speaker 2: family all the very very best for the future and
47:02
Speaker 2: no hospital stays anymore.
47:05
Speaker 3: Yes, thank you, Thank you so much and thank you
47:07
Speaker 3: so much for having me. Then. It's been great to
47:09
Speaker 3: be able to talk about this and tell his story
47:15
Speaker 3: and hopefully it helps some other people kind of know
47:19
Speaker 3: what they potentially have to look forward to in the future.
47:23
Speaker 5: Yeah.
47:23
Speaker 2: Absolutely, absolutely my pleasures. Thank you so much, Thank you
47:30
Speaker 2: for listening and being part of this growing community.
47:33
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
47:35
Speaker 1: leave a review, and share it with someone who might
47:38
Speaker 1: need it. You can connect with us on social media
47:41
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
47:47
Speaker 5: See you next week to make the Bay