Latest / Tom's Hirschsprung's Podcast / Episode 92 - With Sarah Novatt

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Episode 92 - With Sarah Novatt · 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
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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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
0:22
Speaker 1: tuning in. Hello, and welcome to episode ninety two of
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Speaker 1: Tom's Hirshbrungs Podcast. I am delighted to be joined by
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Speaker 1: Sarah and Novitt. Welcome to the podcast. Sarah, thank you
0:56
Speaker 1: so much, Thank you so much for coming on.
1:00
Speaker 2: Now.
1:00
Speaker 1: We are here to talk about Remy and his total
1:04
Speaker 1: colonic hirsh Brungs and possibly to talk a little bit
1:09
Speaker 1: about genetics as well. It's all yeah, it's all very
1:13
Speaker 1: very very interesting stuff. I know we were talking a
1:15
Speaker 1: little bit off air about genetics and how so, I mean,
1:19
Speaker 1: I'm fascinated by it. So it's yeah, it's gonna be
1:23
Speaker 1: an really interesting story, but entirely up to you where
1:28
Speaker 1: you'd like to start from, so please floor is yours.
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Speaker 2: Well, it'll be interesting to see how much of the
1:33
Speaker 2: genetics we go into considering two people without mds trying
1:38
Speaker 2: to speak on the scientific piece of it. So we'll
1:40
Speaker 2: leave that to the end if we get there, okay.
1:43
Speaker 2: But kind of the beginning is that, as I was
1:45
Speaker 2: mentioned to you our air, you know, my husband has Hirshbrungs.
1:49
Speaker 2: His aunt and uncle also have it, so we always
1:52
Speaker 2: knew that it was a familiar possibility when we went
1:55
Speaker 2: to start our family. And what was really interesting is
1:58
Speaker 2: when we started speaking to the Obe's and we said,
2:02
Speaker 2: you know, Hirshprung runs in our family. And this basically
2:04
Speaker 2: told us there's nothing you can do about it in
2:06
Speaker 2: utero or preventative, and we every single appointment I would
2:11
Speaker 2: go and say, okay, but just as a reminder, my
2:13
Speaker 2: husband has Hirschbrum's and they kind of not brushed us off,
2:17
Speaker 2: but they just didn't they didn't acknowledge in the way
2:20
Speaker 2: that I thought they were going to. And then my
2:22
Speaker 2: daughter was born in twenty twenty one, and you know that,
2:26
Speaker 2: as anyone who's somewhat familiar with Hirschprung, you just wait
2:29
Speaker 2: for that first poop. You are just like you know,
2:31
Speaker 2: your fingers are crossed, and it with her. It happened,
2:35
Speaker 2: you know, within a couple of hours and it was
2:36
Speaker 2: all of a sudden, this huge sigh of relief and
2:38
Speaker 2: all this tension just went away that I didn't even
2:40
Speaker 2: know I had been holding for nine months. And when
2:43
Speaker 2: we got pregnant two years later, we went through the
2:45
Speaker 2: same thing where uh, and it was a little bit
2:47
Speaker 2: of a harder pregnancy. There were just some complications, which
2:50
Speaker 2: I always think maybe was kind of the first sign
2:52
Speaker 2: that something was wrong. But uh, every obee appointment with
2:56
Speaker 2: the pediatrician, just so you know, hirstprung is in our
2:59
Speaker 2: family and continuing, that's nothing we can do about it.
3:03
Speaker 2: And when Remy was born, we were at a hospital
3:06
Speaker 2: in New York, in Westchester, and he came out and
3:10
Speaker 2: everything was wonderful. You know, he was doing super well.
3:13
Speaker 2: He immediately latched to his feeding, but he didn't poop.
3:17
Speaker 2: But that's okay because I also had sea sections because
3:19
Speaker 2: they were both breach and they said that can be
3:20
Speaker 2: a little bit more common and when they're have a
3:22
Speaker 2: sea section. About six hours into him being born, things
3:26
Speaker 2: started to take a little bit of a turn. He
3:28
Speaker 2: stopped eating, basically refused to take anything. He started just
3:33
Speaker 2: getting a little bit more lethargic and Any mom who's
3:37
Speaker 2: had a child with a nick you or had health
3:38
Speaker 2: problems can probably relate to this. The doctors kept on
3:42
Speaker 2: asking me, was he acting differently than his personality? And
3:46
Speaker 2: I remembering so frustrated. I'm like, he's ten hours old.
3:49
Speaker 2: I have no idea what his personality is like and
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Speaker 2: whether this is normal or not normal. And I just
3:55
Speaker 2: was so frustrated by the system when this was happening,
3:58
Speaker 2: because it felt like they were the onus, back on us,
4:01
Speaker 2: versus giving us answers. And then things started to take
4:06
Speaker 2: a turn around. I think our twelve or fourteen where
4:09
Speaker 2: he started throwing up. They took him to the nick U.
4:13
Speaker 2: They told us, actually they brought him back from the
4:15
Speaker 2: nick you and they said he had pooped, and so
4:18
Speaker 2: we're like, okay, that. We're pretty shock because we were
4:20
Speaker 2: at that point We're like, oh, he definitely is hurchpronx,
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Speaker 2: you know. But they're like, nope, he doesn't. He pooped
4:26
Speaker 2: work gut, so they're going to do But then he
4:28
Speaker 2: was still not eating, his stomach starting to get extended.
4:32
Speaker 2: He threw up again, and this is time the throw
4:34
Speaker 2: up was green, and again we kept on saying it's Hirshbruns.
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Speaker 2: It's Hirshprungs. And the pediatrician that hospital is kept on
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Speaker 2: telling us hush runs is so rare. It is definitely
4:43
Speaker 2: not Hrshbrongs. I mean use the word definitely not harshprongs
4:47
Speaker 2: with us. And this is a very very you know,
4:51
Speaker 2: valid hospital in the New York system, New York State system.
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Speaker 2: And we kept on, you know, I just I'm also,
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Speaker 2: you know, not even twenty four hours post he's section,
5:00
Speaker 2: I'm still probably you know, have drugs in my system,
5:03
Speaker 2: but we are just we are determined to have them
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Speaker 2: at least acknowledge that this could be Hirtsprung's. But around
5:10
Speaker 2: sometime around a day when he did start throwing up
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Speaker 2: green and some of the tests they were doing were
5:14
Speaker 2: still not, you know, indicating what it was, they decided
5:17
Speaker 2: to basically metavac us to a more serious trauma center.
5:22
Speaker 2: So we were sent to Westchester Medical, which is a
5:25
Speaker 2: children's trauma center in Westchester. I got discharged very quickly. Again,
5:31
Speaker 2: anyone who goes through a C section knows that the
5:33
Speaker 2: first couple of days you can't move. I basically had
5:35
Speaker 2: to stand up walked ten thousand steps to make it
5:38
Speaker 2: to the next hospital so that I could be there
5:41
Speaker 2: with my son, and he ended up being in the
5:44
Speaker 2: westester Medical Hospital for I think something like eleven days,
5:48
Speaker 2: and it was it was probably the hardest eleven days
5:51
Speaker 2: of our life because they did not diagnose him until
5:53
Speaker 2: about day eight, even though again we kept them saying
5:58
Speaker 2: it ares wrong. It's like, what else could it be?
6:00
Speaker 2: But it's a you know, it's a very it's a
6:01
Speaker 2: rare disease. It's a very severe disease. That's what we
6:05
Speaker 2: were telling us, and they were they didn't want to
6:09
Speaker 2: just jump to that conclusion. So while he was in
6:11
Speaker 2: the NICKU there it's a NICKU with like multiple beds.
6:14
Speaker 2: He was in, you know, the trauma room number one.
6:17
Speaker 2: It was both really interesting because he had every tube
6:20
Speaker 2: coming out of him. He obviously, you know, they weren't
6:22
Speaker 2: letting him, they weren't feeding him anything because they didn't
6:25
Speaker 2: know if he could handle it, they will let us
6:27
Speaker 2: hold him. But at the same time, he was the
6:30
Speaker 2: quote unquote healthiest baby in this NICKI room, and he
6:33
Speaker 2: was really not healthy at that point, and it was
6:35
Speaker 2: just it was a very strange place for us to be,
6:38
Speaker 2: both mentally and physically. We weren't allowed to stay there overnight.
6:41
Speaker 2: We could only go for certain hours. If any kid
6:46
Speaker 2: was going through any type of procedure in the room,
6:48
Speaker 2: everyone had to get kicked out for many hours. So
6:50
Speaker 2: we would show up to the hospital and then be told, oh,
6:53
Speaker 2: the room is actually locked down, come back in six hours.
6:56
Speaker 2: And it was just a it was a really you know,
6:59
Speaker 2: I I'm in therapy for it now. I was really
7:01
Speaker 2: horrific for a couple of weeks. But finally, after you know,
7:05
Speaker 2: bury him enemas, after rectal biopsies, after basically every test
7:09
Speaker 2: under the sun, they finally confirmed with us it's hershwunks
7:13
Speaker 2: and said, but at that point they we'd started doing
7:16
Speaker 2: rectal irrigations, we'd started giving him a little bit of
7:18
Speaker 2: milk which he was taking, and they said, you know,
7:21
Speaker 2: you guys can go home. He is short segment, so
7:25
Speaker 2: just keep ondoing irrigations twice a day and come back
7:29
Speaker 2: when he's a little bit older and stronger, whether maybe
7:32
Speaker 2: it's even a couple of weeks, a couple of months,
7:34
Speaker 2: and we'll do the pull through surgery there. And at
7:37
Speaker 2: that point we just while they while the nurses were
7:41
Speaker 2: unbelievable at this hospital, I mean, I truly think Niki
7:44
Speaker 2: nurses are just absolute angels walking around this earth. We
7:48
Speaker 2: were not thrilled with some of the care that had
7:50
Speaker 2: been happened, again, mostly because it took so long for
7:53
Speaker 2: us to get an actual diagnosis. So we started talking
7:57
Speaker 2: to our network, and we are incredibly fortunate that, you know,
8:01
Speaker 2: we basically rung the alarm and all these people came
8:04
Speaker 2: out of the woodwork and were like, I know the
8:06
Speaker 2: head doctor at Yale, I know the head doctor here,
8:08
Speaker 2: and we had everyone calling us and they connected us
8:12
Speaker 2: to Columbia, where the head patric surgeon was very close
8:16
Speaker 2: with doctor Levitt, who is obviously had children's and they
8:20
Speaker 2: kind of took our case over, which was, you know,
8:22
Speaker 2: the best lesson that we could have gotten, and we
8:25
Speaker 2: went to him right after we'd been released, and you know,
8:28
Speaker 2: they came up with something similar where basically they're like,
8:30
Speaker 2: we agree, we should let him get a little bit stronger.
8:33
Speaker 2: So if Rebby was home for about I think of
8:35
Speaker 2: five or six days, and during that time he was
8:38
Speaker 2: doing fine, and then on Thursday or Friday of that week,
8:41
Speaker 2: he started getting lethargic again. He stopped eating again, and
8:46
Speaker 2: all of a sudden he just started throwing up that
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Speaker 2: green bile, and we went to Columbia and New York City.
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Speaker 2: We were immediately admitted to the er. We had probably
8:56
Speaker 2: the two worst days of our entire life, where he
8:58
Speaker 2: was throwing up every fifteen twenty minutes, couldn't keep anything down.
9:02
Speaker 2: We're doing constant record irrigations. So he's three weeks old
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Speaker 2: at this point. I'm also a down three weeks plostpartum.
9:11
Speaker 2: We have a toddler at home, and they just we
9:14
Speaker 2: were in the ICU, or we were in actually I'm sorry,
9:16
Speaker 2: the p ICU at that point. And finally Sunday morning
9:20
Speaker 2: comes around and this doctor comes in and goes, he
9:23
Speaker 2: needs an emergency iliosk to be right now, like it's
9:26
Speaker 2: basically life or death at this point, and so we
9:31
Speaker 2: did it. He got he got the emergency AliOS to me,
9:34
Speaker 2: and that's when they discovered that he actually had total
9:36
Speaker 2: comic versus short segment.
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Speaker 1: Wow, that's that's quite the quite the star. Really first
9:45
Speaker 1: three weeks of his that is yeah. I mean, I
9:47
Speaker 1: guess it's symptomatic of hersh sprungs across the world, but
9:51
Speaker 1: those first few hours, those first few days weeks in
9:55
Speaker 1: your case as well, I mean, it is just a
9:59
Speaker 1: complete whirlwind of hospital appointments, irrigations, Yeah, just everything. I
10:09
Speaker 1: guess one point that you made there and I we
10:11
Speaker 1: talked a little bit about it off air, but there
10:14
Speaker 1: is a family history of hirshbrngs, and you kept saying,
10:19
Speaker 1: you know, got to think about potentially hirshbrung's. You know,
10:23
Speaker 1: so you were in I guess I don't want to
10:25
Speaker 1: say a fortunate position that you knew what hirshbrngs was,
10:28
Speaker 1: but you know what I mean by that. But I
10:33
Speaker 1: guess it must be, as you said, really frustrating when
10:37
Speaker 1: people are not there is a genetic line of hirshbrngs,
10:44
Speaker 1: yet they're still saying, oh, well, it's really rare. Did
10:49
Speaker 1: when when you kind of mentioned there is a family history,
10:52
Speaker 1: did they did they acknowledge it or did you just
10:55
Speaker 1: get the same sort of response it's rare. We don't
10:57
Speaker 1: think so.
10:59
Speaker 2: When it was an when I was pregnant, basically what
11:02
Speaker 2: my OBEs had told me is there's no way to
11:04
Speaker 2: test for it. You know, looking back now, I think
11:06
Speaker 2: we probably could have pushed them. And it's we only
11:09
Speaker 2: learned most of this through remy those first two weeks
11:12
Speaker 2: when they kept in telling me it's so rare. I
11:15
Speaker 2: want to give them the benefit of the doubt that
11:17
Speaker 2: hirst run again can be a very severe diagnosis, and
11:21
Speaker 2: they just wanted to rule everything else out. I just
11:25
Speaker 2: don't think they realized what that was doing to us mentally.
11:27
Speaker 2: It made us feel like we were going crazy. It
11:29
Speaker 2: felt like we had to advocate for our children to
11:32
Speaker 2: stop getting a million tests done. You know. The hardest
11:35
Speaker 2: part was when they they don't they weren't feeding him.
11:37
Speaker 2: He's four days old and they weren't giving him any
11:40
Speaker 2: you know, any milk. And as a mom, you're just
11:43
Speaker 2: that's all you want to do is feed your child
11:45
Speaker 2: and make sure they grow. And all they could tell
11:47
Speaker 2: back was, well, we don't have a definitive answer yet,
11:50
Speaker 2: so we don't want to, you know, jump the gun.
11:53
Speaker 2: I will also say with my husband, so his aunt
11:56
Speaker 2: and uncle both had it, and that was, you know,
11:59
Speaker 2: sixty seven years ago, so they do not know the
12:01
Speaker 2: extent of how, you know, what they had, but both
12:05
Speaker 2: of them have talked to us and shown us, you know,
12:06
Speaker 2: they have scars all over their stomach. My husband did
12:11
Speaker 2: not get diagnosed until he was about a year old.
12:14
Speaker 2: He was constantly constipated as a baby. His mom kept
12:18
Speaker 2: on bringing him to their pediatrician, who said, Hirsprungs is
12:22
Speaker 2: not genetic, this is not related. Your kid just has,
12:26
Speaker 2: you know, stomach issues. And about a year I think
12:29
Speaker 2: something pretty similar happened to Remy at a couple of
12:31
Speaker 2: days where I think he's like he was so bloated
12:34
Speaker 2: and might maybe was somewing up, but he also had
12:36
Speaker 2: to get an aliostomy or cost me at that point.
12:40
Speaker 2: He had it for a couple of months and then
12:42
Speaker 2: he got.
12:42
Speaker 1: A pull through.
12:44
Speaker 2: So we again when we always knew it was possibly
12:47
Speaker 2: for having kids, his care seemed something that we could
12:50
Speaker 2: easily manage, Like if it was going to be like that,
12:52
Speaker 2: we can do that. Like, yes, we don't want it.
12:55
Speaker 2: But Mark, my husband, lives an incredibly normal everyday life.
12:59
Speaker 2: He's a marathon runner. He you know, works in finance
13:02
Speaker 2: in the city. It's we joke that he sometimes has
13:04
Speaker 2: stomach issues, but like it's nothing that impacts his day
13:07
Speaker 2: to day life. And so we always thought if our
13:10
Speaker 2: kids do have Hirshprungs, it will be something similar to Mark,
13:14
Speaker 2: where there'll be maybe a little bit more touch, you know,
13:17
Speaker 2: care in the beginning, but then everything's fine. Redmy was
13:21
Speaker 2: really eye opening for us and just kind of the
13:23
Speaker 2: world of hirshpruns.
13:24
Speaker 1: Yeah, most definitely, And I think I'm very guilty of
13:28
Speaker 1: that as well. Before starting this podcast, I thought, well,
13:32
Speaker 1: Hirshprungs is just hirshprungs, you know, It's just it's the
13:36
Speaker 1: condition that I have, you know. But then knowing about
13:39
Speaker 1: long segment and short segment and total kalonic and tia
13:43
Speaker 1: and all of this stuff, I had no idea. And
13:46
Speaker 1: I guess Mark was in a similar situation. He just
13:49
Speaker 1: has hirshprungs, you know, rather than different types.
13:52
Speaker 2: Exactly we I mean. And it's funny now, and I'm
13:55
Speaker 2: sure you feel the same way. I was talking to
13:57
Speaker 2: a mom who's i think three months old, was just
14:00
Speaker 2: diagnosed with her sprungs, and she they're trying to figure
14:03
Speaker 2: out what their path is for and we're having this text.
14:05
Speaker 2: We are going back and forth at the different types
14:07
Speaker 2: of surgeries and you know, the different options, and we
14:11
Speaker 2: both took a moment We're like, this is insane that
14:13
Speaker 2: we can talk like this, that we know all that
14:16
Speaker 2: we're having this conversation about words that we did not
14:19
Speaker 2: know a couple of years ago and that there was
14:21
Speaker 2: this entire field and options, and you know, you become
14:25
Speaker 2: really fluent in it really fast, and it's it's pretty remarkable,
14:30
Speaker 2: how much as like, if you're yourself a patient or
14:32
Speaker 2: a parent of a patient, you kind of have to
14:34
Speaker 2: immerse yourself to really understand what the disease is and
14:38
Speaker 2: the impact that they can have.
14:40
Speaker 1: Yeah, definitely, And I think also on the flip side
14:43
Speaker 1: of that, sometimes when we talk, like when I talk
14:45
Speaker 1: to you about Hirshprungs and I talk to other people
14:47
Speaker 1: and you talk to other people at Hirshprungs, we use
14:49
Speaker 1: words like danglion cells, we use words like total kalonic,
14:55
Speaker 1: we use words like enema, and we know what they mean.
14:59
Speaker 1: But when we talk to ninety nine point nine percent
15:03
Speaker 1: of the population and you say, what, what's a ganglion cell?
15:05
Speaker 1: They go no idea. So we do end up and
15:09
Speaker 1: I know I've done this myself, but end up in
15:11
Speaker 1: this bubble almost of Hirshprung's chat, that we know what
15:17
Speaker 1: everything means by and large, but nobody else does. So
15:21
Speaker 1: then kind of having to explain it to other people
15:23
Speaker 1: is can be a little bit tricky, it's truting.
15:26
Speaker 2: It's lonely. You know. That's something I've been really working
15:30
Speaker 2: on this last year, is trying to find other families
15:33
Speaker 2: in the New York area that I can connect with
15:36
Speaker 2: because it is a very unique disease. It's a unique
15:40
Speaker 2: set of challenges, you know. I don't think many families
15:43
Speaker 2: travel with irrigation supplies when we go on family trips,
15:47
Speaker 2: and that's something that we have to do every time,
15:48
Speaker 2: and if we travel anywhere we travel, we have to
15:50
Speaker 2: know where the closest children's hospital is because Remy is
15:55
Speaker 2: prone to severe dehydration because he doesn't have a lot
15:58
Speaker 2: of grotest it. It's just these are things that you
16:01
Speaker 2: can talk about with your friends and your family, but
16:04
Speaker 2: it just works. And it's only when you start talking
16:07
Speaker 2: to other people who are going through it that I
16:09
Speaker 2: feel like I can finally almost like relax and let
16:12
Speaker 2: it all out and every bad and scary thought feels
16:16
Speaker 2: kind of okay talking to it. And so I think,
16:19
Speaker 2: especially as a caregiver of hirshprungs or again even if yourself,
16:22
Speaker 2: finding that network and being able to just have these
16:26
Speaker 2: really honest and raw and candid conversations is really beneficial.
16:31
Speaker 1: Yeah, most definitely. And I think not enough really is
16:36
Speaker 1: put on what you go through as parents of child
16:41
Speaker 1: with hirshbruns and the sort of mental and emotional toll
16:46
Speaker 1: that that takes. I think it's it's something that you know,
16:50
Speaker 1: I'm trying to do a lot more about in terms
16:53
Speaker 1: of setting up support groups. But I think also it's
16:56
Speaker 1: something that needs to be mentioned a lot more because
17:00
Speaker 1: it's almost and I know the hospitals do a great
17:04
Speaker 1: job in terms of the physical wellbeing of children, and
17:08
Speaker 1: they do what they need to do because obviously that's
17:11
Speaker 1: the most important thing, getting the child well again, happy again,
17:16
Speaker 1: et cetera. But the rest of it can sometimes be
17:19
Speaker 1: a bit neglected.
17:20
Speaker 2: Yeah, I felt very you know, neglected in those first
17:25
Speaker 2: two years. And I will say I give my ob
17:28
Speaker 2: a ton of credit because when Remy was I think
17:30
Speaker 2: it was post to asty and I was I was
17:32
Speaker 2: really struggling. I the idea of changing his ast me
17:35
Speaker 2: bag completely freaked me out, and I was really having
17:39
Speaker 2: a mental block because I was also very postpartum, and
17:42
Speaker 2: I just I couldn't do it. And I think I
17:44
Speaker 2: couldn't do it because I was scared that I was
17:45
Speaker 2: going to hurt him, and it's also a very for
17:47
Speaker 2: anyone who's seen what it looks like. It's a little
17:50
Speaker 2: it's a little weird looking. And I Myobi kind of
17:54
Speaker 2: came to me and she called me and she's like,
17:56
Speaker 2: you know what, I've never been one to take a
17:59
Speaker 2: lot of meta in but she's like, I'm going to
18:01
Speaker 2: put you on an anti depressant. She's like, I think
18:04
Speaker 2: this is a time in your life that you just
18:05
Speaker 2: need every tool in your toolbox, and you can always
18:08
Speaker 2: go off of it, but right now you are about
18:10
Speaker 2: to enter a really, really hard couple of months with
18:14
Speaker 2: taking care of yourself, with taking care of your family,
18:16
Speaker 2: and you need to take care of yourself. And I
18:19
Speaker 2: am so happy that she did that. And I think
18:21
Speaker 2: some people may take that as that was an overstep,
18:24
Speaker 2: but it was a lifeline for me because I was
18:26
Speaker 2: I was really really struggling and I needed that. I
18:30
Speaker 2: needed therapy. I needed friends and family to just like
18:33
Speaker 2: envelop me because I was having a hard time just
18:35
Speaker 2: putting one step in front of the other and figuring out
18:38
Speaker 2: how to have a newborn with a toddler, but also
18:40
Speaker 2: then how to have a newborn with very severe health challenges.
18:44
Speaker 2: At that point.
18:45
Speaker 1: Yeah, definitely, And thank you again for sharing that as well,
18:49
Speaker 1: because you're definitely not the only one who has been
18:54
Speaker 1: who has been through this, And I think it's sometimes
18:56
Speaker 1: it's tricky for people to share because I think, am I,
18:59
Speaker 1: you know, am I a acting? Am I? The only
19:01
Speaker 1: one doing this? Is you know, you see everybody else
19:03
Speaker 1: getting on or supposedly getting on with life for my
19:06
Speaker 1: you know, but it Having spoken to a lot of parents,
19:11
Speaker 1: a lot of mothers, it happens an awful lot more
19:16
Speaker 1: than people realize, especially as you said, when you have
19:19
Speaker 1: a child diagnosed with I don't want to say a
19:23
Speaker 1: condition you weren't expecting, because you sort of were. Yeah,
19:28
Speaker 1: But at the same time, I guess it was still
19:33
Speaker 1: a surprise to a certain extent.
19:36
Speaker 2: The circumstances were not what we expected. You know, we
19:38
Speaker 2: had an idea of what our children's life was going
19:41
Speaker 2: to be like, what our relationship with our child's life
19:43
Speaker 2: was going to be like, and we had that with Emma,
19:46
Speaker 2: and our situation with Remy was just so drastically different.
19:49
Speaker 2: And you know, that's something I'm working through now, grieving
19:52
Speaker 2: what I feel like we lost in those first couple
19:55
Speaker 2: of weeks and those first couple of months. And you know,
19:58
Speaker 2: it's really interesting. My sister had a baby last week
20:01
Speaker 2: and I went and visited her in the hospital, and
20:03
Speaker 2: I was incredibly nervous that I was going to bring
20:05
Speaker 2: up all of these emotions for me, because I'm obviously
20:08
Speaker 2: school thrilled for her, and I like love seeing my
20:11
Speaker 2: sister as a mom, but watching her hold her newborn,
20:15
Speaker 2: I'm almost angry, like I didn't get to do that.
20:17
Speaker 2: I didn't get to bring my child home. I didn't
20:19
Speaker 2: get to hold them and touch them and have these
20:23
Speaker 2: baby cuddles and experiences, and I feel robbed. And you know,
20:28
Speaker 2: that's a that's something I need to work through, you know,
20:32
Speaker 2: to be the best version of myself, not only for
20:34
Speaker 2: myself but for my children. So it's just it. It does.
20:38
Speaker 2: Even when you get out of the really scary health situation,
20:41
Speaker 2: and even though we still have a lot of health
20:43
Speaker 2: issues that are going on today, where we are out
20:45
Speaker 2: of the scariest part, there's all these things that still
20:48
Speaker 2: kind of you are holding on to and it's it's
20:52
Speaker 2: every day is a journey.
20:53
Speaker 1: Yeah, yeah, And I think that that makes absolute sense,
20:56
Speaker 1: and it's a I don't know whether Ptas steers the
21:00
Speaker 1: right words or rite phrase in terms of when you
21:04
Speaker 1: go back into the hospital or go back into a
21:06
Speaker 1: hospital to go and visit your sister and those kind
21:11
Speaker 1: of feelings.
21:13
Speaker 2: I'm actually interested. I was talking about this where so
21:15
Speaker 2: there is so Remy was in the NEICU at this
21:18
Speaker 2: hospital and in the last year someone ever Remy now
21:20
Speaker 2: he's two and a half. He had just pulled throughout
21:22
Speaker 2: eight months. He had a really healthy year after that.
21:25
Speaker 2: You know, we did the botox, but for the most
21:27
Speaker 2: part it was he had one small bout of entercolitis,
21:29
Speaker 2: which was really scary, but for the most part it
21:32
Speaker 2: was like healthy. And then in the last six months
21:35
Speaker 2: he's had three hospital visits because he's gotten some type
21:40
Speaker 2: of stomach bug or some type of cold or anything.
21:44
Speaker 2: And with someone with you know, a total chronic who
21:47
Speaker 2: doesn't have a large intestine, we can give him as
21:50
Speaker 2: much pleated as possible, he cannot retain that water, and
21:54
Speaker 2: so he goes from healthy to dangerously dehydrate, to the
21:58
Speaker 2: point that one hospital visit yet like lost consciousness and
22:01
Speaker 2: they had to do the Stern number to revive him
22:05
Speaker 2: because he was so dehydrated. And this was only after
22:07
Speaker 2: a couple of hours of being sick. All that to say,
22:10
Speaker 2: we've spent a lot of time in these hospitals, and
22:12
Speaker 2: I was the hospital itself is on a very on
22:15
Speaker 2: a highway that you have to get to you to
22:17
Speaker 2: get to New York City, so I passed it a lot,
22:19
Speaker 2: and there's this time I was passing it and I
22:21
Speaker 2: actually feel my entire body tense just seeing the hospital
22:25
Speaker 2: off the side of the highway, and I realized I
22:27
Speaker 2: was like, oh, I am, I am holding on to
22:29
Speaker 2: so much stuff that I need to work this through
22:32
Speaker 2: because I can't get I can't have such a visto
22:35
Speaker 2: reaction every time I see this building, because I'm going
22:37
Speaker 2: to see this building multiple times a week for potentially
22:40
Speaker 2: the rest of my life. And it's it's pretty amazing,
22:44
Speaker 2: just again, like the weight that we're all carrying.
22:47
Speaker 1: Yeah, I think you're absolutely right. And as I said,
22:51
Speaker 1: you're not the only person that I've spoken to that
22:55
Speaker 1: has been through something something similar to this, because it
22:59
Speaker 1: is a it's a massive thing that you go through
23:04
Speaker 1: in a short space of time. You haven't got the
23:07
Speaker 1: time to process what you're going through because you're just
23:12
Speaker 1: going through it, or you're just trying to get right.
23:16
Speaker 1: This is the next thing. Okay, there's this procedure, right, Okay,
23:18
Speaker 1: now we need to do this. Now we need to
23:20
Speaker 1: do that. And there is absolutely no time whatsoever to
23:26
Speaker 1: go through and process and take stock or anything like that.
23:32
Speaker 1: Is there.
23:33
Speaker 2: No, there really isn't. Especially in these hospital visits. We
23:38
Speaker 2: learned think each time we go I mean, the first
23:41
Speaker 2: time we went in this last year, you'd gotten admitted.
23:45
Speaker 2: And then the second time we learned, okay, we actually
23:47
Speaker 2: have to push them to take his blood in the
23:49
Speaker 2: er for them to see he's dehydrated for us to
23:51
Speaker 2: get admitted. You know. Again that was something because they'd
23:55
Speaker 2: actually we went in when he was feeling sick. They
23:57
Speaker 2: sent us home a forgiven us zofran because he started
24:01
Speaker 2: perking up a little bit. And then a couple hours
24:02
Speaker 2: later we were right back there because he started throwing
24:04
Speaker 2: up again. And so they're like, okay, each time we're
24:07
Speaker 2: learning something new. This time we've learned that the second
24:10
Speaker 2: we I think something's wrong, is I start to look
24:12
Speaker 2: sunk in in he starts to he's not keen as
24:17
Speaker 2: much he has you know, his he throws up. Ever,
24:20
Speaker 2: like we are, we are pushing them to take his
24:23
Speaker 2: blood and get us those levels so that we can
24:26
Speaker 2: But it's a learning process. It's a you know, every
24:29
Speaker 2: day we're learning something new about how to treat it
24:31
Speaker 2: and how to handle it as a family.
24:34
Speaker 1: Yeah, definitely, And that's kind of that so speaks to
24:38
Speaker 1: those sort of trigger points where you go, right, aka,
24:40
Speaker 1: this happens, then we know that we need to go
24:45
Speaker 1: to the hospital or and it's it's I guess it's
24:47
Speaker 1: a lot of trial and error as well.
24:50
Speaker 2: Yeah, so I hate that word now. I think anybody
24:54
Speaker 2: who's had to do an ostery bag when you when
24:57
Speaker 2: your kid gets an osteme bag, they bring this wound
24:59
Speaker 2: care team and basically no ostome bag, you know, pouches
25:05
Speaker 2: fit the same person twice. So they just give me
25:08
Speaker 2: in like it's trial and error. It's trial and error,
25:10
Speaker 2: and I'm like, I cannot deal with trial and error.
25:13
Speaker 2: You need to tell me what is going to stay
25:14
Speaker 2: on my son and not leak, and just like tell
25:17
Speaker 2: me because I but then you go, it's the same
25:19
Speaker 2: thing with diaper rash, you know, diaper Gosha's it's it's
25:22
Speaker 2: trial and error about like what will work for your
25:24
Speaker 2: child's skin. And I just I know that word is right,
25:29
Speaker 2: because it was like we found the right Austin care
25:31
Speaker 2: that worked for him, and it was like, you know,
25:33
Speaker 2: coal plasts and this and that, and you know, we
25:36
Speaker 2: did a mishmash of things. Same thing for as diaper rash.
25:38
Speaker 2: We have like a whole concoction that we do that
25:40
Speaker 2: works for us, but it took us a couple weeks
25:43
Speaker 2: for both of them to figure out. And so I
25:45
Speaker 2: hate when people come to me they're like, well, how
25:46
Speaker 2: should I treat diaper cray? I'm like, trial and error.
25:50
Speaker 1: Yeah, it's horrible. I know what you mean, because everybody
25:53
Speaker 1: wants everybody wants an answer. Don't know, everybody wants do
25:57
Speaker 1: a B and C and everything.
26:00
Speaker 2: I do not want to be having to question the
26:02
Speaker 2: care that I am given. I go to doctors for
26:05
Speaker 2: doctors to tell me what to do, and I say yes.
26:07
Speaker 2: And that's unfortunately, that's not what this disease is. It's
26:10
Speaker 2: a lot of every kid or everybody who has not
26:13
Speaker 2: even kids. Every person who has first run is a
26:15
Speaker 2: very different type of experience, and the care is going
26:20
Speaker 2: to be different.
26:21
Speaker 1: Yeah, nice, definitely, definitely, And I know we'll move back
26:25
Speaker 1: to Remy's story surely, towards the end. But one thing
26:30
Speaker 1: that I know you wanted to talk about a little
26:31
Speaker 1: bit more is something that's coming up on mid October eighteenth?
26:36
Speaker 2: Am I right saying they Saturday.
26:38
Speaker 1: The eighteenth October? Would you like to talk about it?
26:42
Speaker 2: So one of the things that I've talked about a
26:44
Speaker 2: lot is that I have an incredibly supportive friends and family,
26:47
Speaker 2: and I also have a job. I work at Roku,
26:50
Speaker 2: who has more works at Bloomberg, and both of our
26:51
Speaker 2: jobs were incredibly understanding when we were going through this
26:55
Speaker 2: with Remy. Not only did they let us take the
26:57
Speaker 2: time that we needed to be with him, but we
27:00
Speaker 2: had friends dropping off food for us, We had people
27:02
Speaker 2: taking care of Emma. We are fortunate enough to be
27:05
Speaker 2: in a financial position that we could spend money on hospital,
27:08
Speaker 2: on the hotels and flights and anything he needs for
27:12
Speaker 2: Dibi rash we can get. And it just made me
27:15
Speaker 2: so incredibly sad because it is such an expetit disease
27:21
Speaker 2: that how do these families do it. It's it's kind
27:23
Speaker 2: of something that I've been constantly thinking about since Armie
27:26
Speaker 2: was born, that I just don't understand how families are
27:28
Speaker 2: able to handle this If they are not in a
27:31
Speaker 2: situation where they are just again surrounded by communities who
27:35
Speaker 2: can just pick up all of the different pieces. And
27:38
Speaker 2: so when doctor Levitt reached out and said there was
27:40
Speaker 2: this race for every child that was happening through Children's
27:44
Speaker 2: in DC, I knew that this was going to be
27:46
Speaker 2: the kind of the first time that I wanted to
27:48
Speaker 2: fundraise for this, you know, my own experience, and so
27:52
Speaker 2: we joined the team in Credit Bowels, which I cannot
27:55
Speaker 2: take any credit for that name that is there, and
27:57
Speaker 2: I'll thought, you've made it out. I know, I wish
28:00
Speaker 2: I could say it's such a good name. I think
28:02
Speaker 2: I think they did. But I called Children's and I
28:06
Speaker 2: called doctor Levit's colerectal group, and I said, I would
28:09
Speaker 2: love to fundraise, but you know, I want to be
28:11
Speaker 2: very clear, I specifically want a fundraise to help other
28:15
Speaker 2: families get the care that they need. In the US,
28:18
Speaker 2: there's obviously a ton of great doctors, but I think
28:20
Speaker 2: we can all agree that there are two specialists for
28:22
Speaker 2: colerectal that everyone tends to go to, and if you're
28:26
Speaker 2: not in DC or Cincinnati, it's probably hard to get there.
28:29
Speaker 2: And then Ronald McDonald house can only fit so many people,
28:33
Speaker 2: and I never want cost to be a reason why
28:36
Speaker 2: families are not getting their children the care that they need.
28:39
Speaker 2: And so DC agreed that I could earmark whatever I
28:42
Speaker 2: raised that would go directly to the families to help
28:45
Speaker 2: them travel to see colerectal specialists, to help them with food,
28:49
Speaker 2: to help them with loss of job support during that time,
28:53
Speaker 2: to help them again with diaper, rash cream and ostom
28:56
Speaker 2: supplies and anything they need so that they can focus
29:00
Speaker 2: all of their attention unjust their children and making sure
29:04
Speaker 2: that they can be as present of prepared as they
29:06
Speaker 2: can without any of the additional stress. And so I
29:09
Speaker 2: started fundraising, and again it was the first time we'd
29:12
Speaker 2: ever kind of publicly shared Remy's story, and the response
29:16
Speaker 2: has been pretty overwhelming. I think we raise something like
29:19
Speaker 2: twelve or thirteen thousand dollars in one day. I think
29:22
Speaker 2: we're about over fifteen thousand dollars now and it's only
29:25
Speaker 2: been about four or five days of fundraising. People have
29:29
Speaker 2: just been absolutely lovely, and I that's why I'm here
29:33
Speaker 2: mostly to just you know, continue raising awareness, continuing building
29:37
Speaker 2: support for families that need it so that they can
29:40
Speaker 2: be there for their children.
29:42
Speaker 1: Absolutely, and I love the fact that you specifically mention
29:47
Speaker 1: that it's going towards families to help with supplies, so
29:52
Speaker 1: it's not just going in too so people know that
29:54
Speaker 1: when they give, they give money to your specific just
29:58
Speaker 1: giving like that that it is going specifically to families.
30:02
Speaker 1: It's not just going into a pot that helps you
30:06
Speaker 1: know every condition under the sun, and it's going to
30:09
Speaker 1: the hospital or whatever. Is going to healthy families specifically.
30:16
Speaker 2: And we talked about it specifically, it will go for
30:18
Speaker 2: hotel vouchers, meal vouchers. They're going to start writing like
30:22
Speaker 2: visa credit cards that they can give to families to
30:25
Speaker 2: help cover diapers. I mean again, as someone with a
30:28
Speaker 2: kid with hirsprungs, the amount of diapers we buy each
30:32
Speaker 2: week is actually like we support the pamper's business. Uh
30:38
Speaker 2: that if we go away, there are going out of business.
30:41
Speaker 2: What dapers are expensive, and there's just there's so much
30:45
Speaker 2: And again like even outside of that care, the when
30:48
Speaker 2: Remy gets sick and we have to go to the
30:49
Speaker 2: hospital four days, a lot of people do not have
30:52
Speaker 2: the luxury to do that, and I just every time
30:54
Speaker 2: we're there, my heart is breaking because it's just again,
30:57
Speaker 2: Remy is the healthy kid. A lot of times in
30:59
Speaker 2: these little situations, and it's just anything we can do
31:04
Speaker 2: to help others, definitely.
31:06
Speaker 1: And we've mentioned about fundraising, what fundraising is for how
31:12
Speaker 1: people are going to fundraise and will share the link
31:14
Speaker 1: in a second, but what are you actually doing to fundraise?
31:19
Speaker 2: Not much yet, it's kind of.
31:21
Speaker 1: Right, is the race going on?
31:23
Speaker 2: Oh? Like, what's actually happening that I like straight not
31:26
Speaker 2: shared a lot of my channels. We so this race
31:30
Speaker 2: for every child is in October and it's a five
31:32
Speaker 2: caper adults, but then it's actually like a kid's dash,
31:35
Speaker 2: So Remy and Emma will be dressing up and doing
31:38
Speaker 2: a dash and racing with all these other children who
31:41
Speaker 2: are not only impacted by colorectal issues, but kind of
31:44
Speaker 2: any type of disease that children's in DC. So I
31:47
Speaker 2: saw I think there was a you know, a pediatric
31:49
Speaker 2: oncology group, there was you know, there's any type of
31:53
Speaker 2: pediatric disease, And it's just I think it's gonna be
31:55
Speaker 2: a really lovely day and kind of again going back
31:58
Speaker 2: to just finding our opportunities to be with people who
32:01
Speaker 2: are in similar situations, other parents, other kids, Remy meeting
32:06
Speaker 2: other kids who maybe haven't asked me bag now and
32:08
Speaker 2: we can say that you know, you had this for
32:10
Speaker 2: about a year. That's really important for need to you know,
32:14
Speaker 2: show him that he's not alone and you know, show
32:17
Speaker 2: him his scar and that other kids have that similar scar.
32:19
Speaker 2: So I think it's just going to be I think
32:21
Speaker 2: it's gonna be a really lovely.
32:22
Speaker 1: Day, definitely. And I now love that as well when
32:24
Speaker 1: you say to make sure that to the remy to
32:29
Speaker 1: know that he's not alone, because that's something that is
32:33
Speaker 1: so important to me and so important that you know, yes,
32:38
Speaker 1: you can always say it's one in five thousand or
32:41
Speaker 1: whatever the fig of her hirshbruns is at the moment,
32:44
Speaker 1: but to actually meet people who have ostome bags, who
32:47
Speaker 1: have hirshbrungs is just is so so important. Having been
32:51
Speaker 1: there myself, it's yeah, incredibly incredibly important. And I know
32:56
Speaker 1: you mentioned Mark is a marathon runner. Is he taking
33:00
Speaker 1: part in the five k as well?
33:02
Speaker 2: I've always tell him that he should. I mean, oh yes,
33:05
Speaker 2: I'm going to make him do it.
33:07
Speaker 1: Uh good, good?
33:08
Speaker 2: He can run, he can run five k? He should
33:10
Speaker 2: be Oh no, I think it's you know, going back
33:12
Speaker 2: to that, there's two things that I'm really focused on
33:14
Speaker 2: right now. It's one making sure Remy knows that he's
33:17
Speaker 2: not alone and not treating him like a sick kid,
33:21
Speaker 2: but also doing the work for my daughter. I never
33:24
Speaker 2: want her to think that our attention is only towards Remy,
33:27
Speaker 2: you know, I want them to both feel equally loved
33:30
Speaker 2: and you know, the attention of both them, And so
33:33
Speaker 2: it's a really you know, I'm sure a lot of
33:35
Speaker 2: families go through this where you're kind of trying to
33:37
Speaker 2: balance it all, and it's something we're again working through
33:40
Speaker 2: every day, is how do we not treat him like
33:41
Speaker 2: a sick kid but also not make Emma feel like
33:44
Speaker 2: all of our attention is going to him when sometimes
33:46
Speaker 2: it needs to.
33:48
Speaker 1: Yeah, And I guess that can be a really, really
33:51
Speaker 1: difficult balance, And that's it's one of the things, like
33:55
Speaker 1: you said, a lot of parents, a lot of parents
33:58
Speaker 1: that I speak to, have children who are quote unquote
34:02
Speaker 1: normal and healthy and have children that have hirsprungs. Then
34:07
Speaker 1: you do have to be at hospital appointments a lot,
34:09
Speaker 1: and you do have to be at surgeries a lot,
34:11
Speaker 1: and I guess that can be that can be difficult
34:15
Speaker 1: to understand if you are the child without hirsprungs, I
34:19
Speaker 1: guess yep.
34:21
Speaker 2: And one of that piece of advice had actually a
34:23
Speaker 2: mom who has a son who has hirsprungs. Her son
34:26
Speaker 2: now is like, I think, thirty five, married with his
34:28
Speaker 2: own kids. But I was talking to her about this
34:31
Speaker 2: real concern I had, you know, neglecting Emma in some
34:34
Speaker 2: way when Remy was born and when we were living
34:36
Speaker 2: out of the hospitals, and she basically said, with your
34:40
Speaker 2: other children, all they care about is that they are
34:42
Speaker 2: surrounded by love, and so when you're away with Remy,
34:45
Speaker 2: just anything you can do to envelop her in love,
34:48
Speaker 2: whether it be from grandparents and uncle's friends, that is
34:51
Speaker 2: what she's going to remember from that time, not that
34:53
Speaker 2: you weren't there. And it's really stuck with me because
34:57
Speaker 2: I really go into overdrive now whenever we have these
35:00
Speaker 2: you know, there was a day a couple of months
35:01
Speaker 2: ago when we had to immediately take Remy to the
35:04
Speaker 2: hospital because he had one of his beltup dehydration. And
35:08
Speaker 2: I texted a group of moms in the town I
35:11
Speaker 2: live in and I basically said, we have to take Remy.
35:13
Speaker 2: Can people help me with Emma? And all of a sudden,
35:15
Speaker 2: My Mom was like, Okay, dinner will be at the
35:17
Speaker 2: hospital here. I will pick Emma for a plad aid here.
35:20
Speaker 2: And Emma had the best couple of days of her life.
35:22
Speaker 2: I mean, she was just like you had to be
35:23
Speaker 2: with her best friends for a couple of days and
35:26
Speaker 2: it was just that's what she's going to remember from
35:28
Speaker 2: that period that she all these people around her were
35:33
Speaker 2: just like, you know, surrounding her and giving her love.
35:35
Speaker 2: And she's not going to remember that we were gone
35:38
Speaker 2: with Remy and that's all I really want.
35:41
Speaker 1: Yeah, but that's such a good idea though. It's such
35:44
Speaker 1: a good idea that it and obviously having the community
35:49
Speaker 1: and wish to do that is so so helpful. Yeah,
35:55
Speaker 1: I can imagine having people and just being able to
35:58
Speaker 1: text and go, could you just pick this up for me?
36:01
Speaker 1: Could you just you know, take care of this or
36:04
Speaker 1: that or the other?
36:04
Speaker 2: I imagine is Yeah, Now my brother and my brother John
36:08
Speaker 2: all of nine minutes away. They Emma's favorite thing is
36:11
Speaker 2: doing sleepoverers there, so we can always say sleeper forward
36:14
Speaker 2: the cousins and you know, again, that's what she's thinking
36:17
Speaker 2: about that night. She's not thinking about the fact that
36:19
Speaker 2: and we don't again we don't want her to know
36:21
Speaker 2: what's going on with rend Me. A lot of times
36:22
Speaker 2: she's four and a half and she doesn't need to
36:25
Speaker 2: know what he's going through at this point.
36:27
Speaker 1: Yeah, and I guess as well go back to sort
36:30
Speaker 1: of the the rest of your family. They know what
36:34
Speaker 1: Hirshprungs is, having had multiple members of the family have
36:39
Speaker 1: different types of Hirshprungs, so they know what Hirshbrungs is.
36:44
Speaker 1: They know that you have to spend a reasonable amount
36:47
Speaker 1: of time, especially when you're younger, back and forth to hospital.
36:50
Speaker 1: So I guess they're probably more understanding the most.
36:55
Speaker 2: Oh my gosh, they've been unlovable. Yeah, Mark's mom who
37:00
Speaker 2: you know, that's her family lineage that it kind of
37:02
Speaker 2: comes down so it's for three siblings, and she was
37:04
Speaker 2: really as a caregiver for her three siblings whenever Remy's
37:08
Speaker 2: in the hospital. You know, some people get squeamish about hospitals,
37:11
Speaker 2: they get squeamish about things that come along with it.
37:13
Speaker 2: But like she just you know, can walk right into
37:16
Speaker 2: any any medical situation and uh, you know, it's just
37:20
Speaker 2: is there and there's the support system, and it's pretty fantastic.
37:23
Speaker 2: I think The only thing that's really like put mark
37:25
Speaker 2: eye over the edge was when Remy had when he
37:28
Speaker 2: had the astome, he prolapsed a few times. I think
37:32
Speaker 2: that's the fun thing. That's like, Actually, I was like,
37:34
Speaker 2: I'm not a squeamish person. I think we both almost fainted.
37:38
Speaker 1: Yeah, it's it's probably one of those things I have
37:41
Speaker 1: seen it before, but I you know, it's one of
37:43
Speaker 1: those things that I don't think you can really prepare for,
37:46
Speaker 1: like it just happens. And yeah, I can't imagine anybody
37:52
Speaker 1: because I can't imagine anybody really. They talk you about
37:55
Speaker 1: wound care and they talk about this, and they bringing
37:57
Speaker 1: the astome key and there's probably nobody that goes, ah, yes,
38:01
Speaker 1: prolapse looks like this.
38:03
Speaker 2: No, it's actually a funny story. So we we go
38:07
Speaker 2: to this place, it's called Black Island. It's this tiny
38:10
Speaker 2: little island off of Rhode Island. There's no hospital. I mean,
38:12
Speaker 2: it's thirteen miles on it's tiny. And we went there
38:15
Speaker 2: when Romy hadn't asked to me because everything had been fine,
38:18
Speaker 2: and it was Memorial Day, Saturday night at nine pm,
38:22
Speaker 2: and he prolaps for the first time on this tiny
38:25
Speaker 2: island and we I mean like we basically fainted. We
38:30
Speaker 2: I mean, we didn't know what to do. It's we're like,
38:33
Speaker 2: are we gonna have helicopter off this island and to
38:35
Speaker 2: be called our surgeon at that time at Columbia And
38:39
Speaker 2: we are just like sobbing, like, I mean, we are
38:41
Speaker 2: so scared. My everyone is pretty freaked out. And he's like,
38:47
Speaker 2: he's like, don't worry about it. Put some sugar on it,
38:49
Speaker 2: throw him, throw him in the bath, put some sugar
38:52
Speaker 2: on it, and have a glass of wine. And we're like,
38:54
Speaker 2: I'm sorry, what And he's like, put some sugar on it,
38:58
Speaker 2: and we did, and it went back in and I
38:59
Speaker 2: will I said, that's the only time I went back in.
39:01
Speaker 2: The Other times it happened was not as easy, and
39:03
Speaker 2: we actually did require surg to call care. But it
39:07
Speaker 2: was just like this. It was this laughable moment because
39:10
Speaker 2: we are i mean truly the lowest of blows and
39:12
Speaker 2: he's just like, sugar, it's all you need. What is
39:16
Speaker 2: medicine at this point?
39:18
Speaker 1: Yeah, you're thinking you need a surgical team to come. No, actually,
39:21
Speaker 1: what you need to do is just go down the
39:22
Speaker 1: shop and get some sugar. Like that's that was all
39:24
Speaker 1: you need and.
39:25
Speaker 2: Then put the plastic bag back on top of it.
39:27
Speaker 2: I'm like, we've done really well in the medical field.
39:30
Speaker 1: Yeah. Yeah, all of the medicine that he's on and
39:32
Speaker 1: all of the surgical things you think you need, you
39:34
Speaker 1: just need a bag of sugar.
39:35
Speaker 2: Yep. So it was, it was, it was. I'm glad
39:39
Speaker 2: that that was kind of the outcome of the first prolapse,
39:41
Speaker 2: but it was. It was pretty funny.
39:43
Speaker 1: But then you'd rather have that than going, yeah, we
39:45
Speaker 1: need to go to hospital, we need to get ambulance,
39:47
Speaker 1: we need to all this.
39:48
Speaker 2: Just the next sugar did not help the next two times?
39:53
Speaker 1: No, Well, yeah, it's been a thirty three percent success, right,
39:57
Speaker 1: isn't that? But for a little bit of sugar, it
40:02
Speaker 1: just while we've got some viable miduts. So in terms
40:05
Speaker 1: of future for Remy, what do you see for his future?
40:12
Speaker 2: I think he is going to have an unbelievable childhood
40:16
Speaker 2: and adulthood and live in incredibly vibrant life. I recognize
40:22
Speaker 2: that we are in a hard period right now. His
40:25
Speaker 2: body is learning how to adapt without having, you know,
40:28
Speaker 2: the large intestine, and there's definitely a lot of challenges.
40:31
Speaker 2: We're starting our barrel management program and hotty training and
40:35
Speaker 2: what that will look like and having AIDS in school.
40:38
Speaker 2: And I recognize the next couple of years which just
40:40
Speaker 2: they're going to be hard. And but again, I think
40:43
Speaker 2: at the end of the day, my husband and I
40:45
Speaker 2: we are just so focused on making sure he is
40:48
Speaker 2: happy and having as much of a you know, quote
40:51
Speaker 2: unquote normal because he is normal and I hate using
40:54
Speaker 2: the word not normal, but you know, a normal childhood's
40:58
Speaker 2: He went to camp this summer, he's starting K two's
41:00
Speaker 2: in the fall, and it just requires more attention from us.
41:04
Speaker 2: It requires us talking to his teachers and you know,
41:07
Speaker 2: the camp counselors. But that's something that we're willing to do,
41:10
Speaker 2: and if they are willing to do it, then I'm
41:12
Speaker 2: just you know, that's all I could ask for. So
41:14
Speaker 2: I think he's just gonna be Honestly, I think we're
41:17
Speaker 2: gonna end up in the hospital more because he is
41:19
Speaker 2: just a boy and loves jumping off things and throwing
41:23
Speaker 2: himself against walls and being just pure, pure boy. So
41:28
Speaker 2: you know that's what it's.
41:29
Speaker 1: Going to happen. Yeah, it's gonna happen.
41:32
Speaker 2: We're walking to like, oh cry me again, broken arm? Great?
41:34
Speaker 1: Yeah, Yeah, Well broken off as a fine like you
41:37
Speaker 1: know what, once you've dealt with hershbrugs and you dealt
41:39
Speaker 1: with surgeries, a broken figure broken off.
41:42
Speaker 2: Well, on Friday, it was his last day of camp
41:45
Speaker 2: and he loves camp, I mean loves it. And it
41:48
Speaker 2: was like running in was so excited, all of his
41:50
Speaker 2: friends were there, and he just tripped and all four
41:53
Speaker 2: of his teeth went into his lips and one of
41:55
Speaker 2: his two shipped, and it was like there was blood everywhere,
41:58
Speaker 2: like all over me, all over him in, and I
42:01
Speaker 2: like took him to the bathroom. We like know, we
42:03
Speaker 2: realized we had to go to the dentist to see
42:04
Speaker 2: if he needed stitches. He didn't. Again, his boy, but
42:09
Speaker 2: every parent like call me, They're like, we were so
42:11
Speaker 2: shuken up. You were so calm in that situation, Like
42:15
Speaker 2: how And I was like, you don't understand what episode
42:18
Speaker 2: Like little teeth, a little lip line, Oh good, Like
42:21
Speaker 2: this is nothing compared to things I've seen at this child,
42:24
Speaker 2: Like we this is cousinetic. We will figut this out.
42:28
Speaker 1: But yeah, definitely, Well, once they've listened to this episode,
42:32
Speaker 1: then they'll know quite why you were so calm.
42:35
Speaker 2: Exactly why I was just like, oh please, he'll be fantastic.
42:39
Speaker 1: Well, it's obvious that that Remy's got a great support
42:42
Speaker 1: system around it, and that is is so so good
42:46
Speaker 1: to hear. I just wanted to say thank you so
42:48
Speaker 1: so much for coming on, and I wish you wish
42:53
Speaker 1: for Remy and Mark obviously with his Hirshbrungs as well,
42:57
Speaker 1: all and all the rest of your family, all the
42:59
Speaker 1: very very for the future.
43:02
Speaker 2: No, I really appreciate it, and thank you for doing
43:04
Speaker 2: this podcast and for bringing attention to this again. It
43:07
Speaker 2: is something that many people have not heard about, and
43:10
Speaker 2: even if it's just for other Hirschbrung families to listen
43:12
Speaker 2: to what other people are going through, it's incredibly beneficial.
43:16
Speaker 2: So I really appreciate all the work you're doing my pleasure.
43:23
Speaker 1: Thank you for listening and being part of this growing community.
43:26
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
43:29
Speaker 1: leave a review and share it with someone who might
43:32
Speaker 1: need it. You can connect with us on social media
43:35
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
43:40
Speaker 1: See you next week, y