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Episode 116 - With Annalise Steele · 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 Hirshbrng'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.
0:45
Speaker 2: Hello, and welcome to episode one hundred and sixteen of
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Speaker 2: Tom's Hirshbrugs Podcast. I'm very glad to be joined this
0:53
Speaker 2: evening by analyse Analise. Welcome, Ah, thanks so.
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Speaker 3: Much for for coming on. We are going to talk
1:02
Speaker 3: about your son Jack and his and his hirshprung story.
1:07
Speaker 3: So I guess entirely up to you where you'd like
1:10
Speaker 3: to start.
1:13
Speaker 4: Yeah, well Jack is almost five now, so I had
1:18
Speaker 4: never heard of Hirshbrung's disease and it wasn't even on
1:23
Speaker 4: our radar even after he was born. But don't me
1:29
Speaker 4: to just tell his whole story from the piginnies. Okay, Well,
1:35
Speaker 4: Jack was We knew he had something called duodenal la
1:41
Speaker 4: tresia or duodinal depending on how you want to say it,
1:45
Speaker 4: but we didn't know to what except if it was
1:48
Speaker 4: just a partial blockage of his intestines, the part right
1:53
Speaker 4: between the stomach and the small intestine. And we found
1:58
Speaker 4: that out at our anatomy's and for him when he
2:01
Speaker 4: was around twenty weeks for gestation, So that was a
2:06
Speaker 4: big shock for us. He's our first child. And then
2:11
Speaker 4: we went to our follow up meeting four weeks later
2:15
Speaker 4: to kind of get in there with a better ultrasound,
2:19
Speaker 4: make a game plan because he would likely need surgery
2:22
Speaker 4: after being born. And then they're like, well, we're not
2:28
Speaker 4: going to talk about surgery anymore because we're just going
2:30
Speaker 4: to take you and admit you into the hospital because
2:33
Speaker 4: they thought I was going to have Jack that day
2:35
Speaker 4: at twenty four weeks for whatever reason, I was looking
2:42
Speaker 4: like I was having like cervical insufficiencies. But so that
2:47
Speaker 4: was another rollercoaster for us with him. Luckily he stayed
2:52
Speaker 4: in there. He stayed put until twenty eight weeks. So
2:59
Speaker 4: I also luckily had family in town. My dad and
3:05
Speaker 4: my stepmom were in town, and my sister was staying
3:09
Speaker 4: with us as well. And I don't know if you
3:11
Speaker 4: ever watched the movie Oh Brother, where Art thou you.
3:16
Speaker 4: It's pretty funny. It's kind of like a like a
3:19
Speaker 4: little spinoff spoof of The Odyssey. You should watch it.
3:24
Speaker 4: But we watched that really late and everyone went to bed,
3:29
Speaker 4: and then I woke up a couple hours later and
3:32
Speaker 4: I was going into labor and my labor was really fast.
3:36
Speaker 4: So I had texted them before he left, being like, oh,
3:41
Speaker 4: you know, I'm having contractions, like, I'll probably just go
3:44
Speaker 4: in and they'll try to slow it down and hopefully
3:47
Speaker 4: we'll be home later. But I got there and they're like, uh,
3:51
Speaker 4: you're at an eight, and of course Jack was breach,
3:55
Speaker 4: so I had an emergency C section. So then I
3:58
Speaker 4: texted them back like five in the morning with pictures
4:03
Speaker 4: of you know, Jack, like, oh, he's here. So that
4:09
Speaker 4: was you know, he is a character, and his whole
4:13
Speaker 4: birth story is also like he is a character. But
4:18
Speaker 4: because he was born at twenty eight weeks, he was
4:20
Speaker 4: still too small to have his first surgery to fix
4:23
Speaker 4: that atresia. So I can't remember the goal of how
4:29
Speaker 4: many grams they wanted him to be at, but I
4:33
Speaker 4: mean he was born at one hundred and sixty grams
4:39
Speaker 4: I think, so like two pounds five ounces Wow, So
4:43
Speaker 4: he was. He was a little guy. You would never
4:47
Speaker 4: know now. I mean he's still skinny, but he You know,
4:53
Speaker 4: we were very lucky, and a lot of the premature stuff,
4:56
Speaker 4: a lot of premature struggles that happened when they're so little,
5:01
Speaker 4: we didn't have happened. So he didn't have any brain bleeds.
5:04
Speaker 4: His lungs were fairly strong because when they admitted me
5:07
Speaker 4: at twenty four weeks, they gave me those steroid shots
5:10
Speaker 4: that help mature the lungs a little faster, and so
5:12
Speaker 4: I think that helped him when he was born at
5:16
Speaker 4: twenty eight weeks anyway, so after about a month he
5:22
Speaker 4: got big enough to have his first surgery and it
5:29
Speaker 4: went well. His scar for that looks great. And the
5:33
Speaker 4: reason why this is important for his stories because you know,
5:37
Speaker 4: normally they find out about hirshbrungs within the first couple
5:40
Speaker 4: days of life, right because they're not passing the maconium
5:44
Speaker 4: and they're not pooping. But Jack wasn't even eating anything
5:49
Speaker 4: for the first thirty days of his life. He was
5:53
Speaker 4: on IVY nutrition because they didn't know if he had
5:58
Speaker 4: like a full like disconnect or if itels just like
6:01
Speaker 4: a little blockage and they don't want to mess with,
6:06
Speaker 4: you know, possibly getting neck, which is like the necrotizing
6:13
Speaker 4: entero colitis. I think yes. And so after his surgery,
6:21
Speaker 4: it was, you know, the funny joke of waiting for
6:24
Speaker 4: poop to happen. You know, I'd come in every day
6:28
Speaker 4: and be like, has he pooped yet? And You're like no,
6:32
Speaker 4: and then all the other parents and then NICKI, You're like,
6:34
Speaker 4: oh my gosh, did Jack poop yet? Like no, what
6:37
Speaker 4: about your kid?
6:38
Speaker 1: No?
6:38
Speaker 4: Not yet, So, you know, early introduction to talking about
6:43
Speaker 4: poop often.
6:45
Speaker 1: Uh.
6:46
Speaker 4: And then eventually he did finally poop, and it was
6:53
Speaker 4: a lot, and like they were also giving him like
6:56
Speaker 4: laxatives I think, and like glycerine and all that to
7:01
Speaker 4: try to get him to get him to poop. And
7:06
Speaker 4: they did give us a little card that has like
7:08
Speaker 4: a little poop eboge on it and it says like
7:11
Speaker 4: I had my first poop, and I was I should
7:15
Speaker 4: have grabbed that. But it took him a long time
7:18
Speaker 4: to poop, and so I joke about how, you know,
7:23
Speaker 4: he didn't poop for.
7:24
Speaker 5: Like like seventy nine days or something like that, and
7:32
Speaker 5: then once he started pooping, it was just like he
7:34
Speaker 5: wouldn't stop.
7:35
Speaker 4: So it went from nothing to everything. And then by
7:41
Speaker 4: that time he was also ready to go home, so
7:47
Speaker 4: you know, he wasn't eating my mouth either. You know,
7:51
Speaker 4: later we found out he had hirshprungs, so of course
7:53
Speaker 4: he didn't want to eat. He was so backed up,
7:55
Speaker 4: the poor guy. So he came home with an NGI
8:00
Speaker 4: tube and we would just pump his stomach full of food.
8:05
Speaker 4: But by the time we got home with him, because
8:09
Speaker 4: he was in the he was in the NICKEU for
8:11
Speaker 4: seventy nine days, and he came home around his due date,
8:20
Speaker 4: and he was like pooping in the hospital, and by
8:24
Speaker 4: the time we got home he had kind of like
8:25
Speaker 4: stopped pooping. And then you get into the issue of oh,
8:30
Speaker 4: for newborns, they can poop twelve times a day all
8:34
Speaker 4: the way to once every like twelve days, and that
8:36
Speaker 4: can be normal. And so he was also our first child,
8:39
Speaker 4: so I don't know what was normal, and I didn't
8:44
Speaker 4: have anything to compare it to. And so he did
8:49
Speaker 4: stop pooping, and he was very gassy and a very
8:53
Speaker 4: grunty baby. A poor guy. Looking at looking at it now,
8:58
Speaker 4: I you know, I feel so bad, But we didn't know,
9:01
Speaker 4: so eventually it would go like twelve days without him pooping,
9:11
Speaker 4: and anytime we would feed him, he would just like
9:14
Speaker 4: get so mad. And I remember my mother in law
9:17
Speaker 4: being like, this isn't supposed to happen, like babies are
9:20
Speaker 4: supposed to be happy after they eat and like, you know, relax,
9:24
Speaker 4: and Jack would just like scream, and you know, you
9:29
Speaker 4: could tell he was very uncomfortable. And so of course
9:35
Speaker 4: we were talking with his pediatrician and she would say
9:39
Speaker 4: the thing, well, this could be normal. And then the
9:42
Speaker 4: other thing, he was on breast milk. I was pumping
9:45
Speaker 4: for him, and usually like breast milk poop is you
9:52
Speaker 4: know that yellowy orange seedy, and his was never like that.
9:57
Speaker 4: It was you know, dark brown and like greenish, and
10:02
Speaker 4: it really stunk and I didn't know why. And the
10:09
Speaker 4: pediatrician was like, yeah, that's not as normal, but it
10:12
Speaker 4: still can be normal. And I think we were so
10:15
Speaker 4: close to finding out like, Okay, there's something really not
10:18
Speaker 4: right because she's like, he is bloated, you know, if
10:23
Speaker 4: it keeps happening like this, like I want to get
10:26
Speaker 4: some imaging, but we weren't at that point yet. And
10:30
Speaker 4: then also like he was born premature, so they were
10:35
Speaker 4: doing growth charts that were like three months ahead of
10:37
Speaker 4: where like he was supposed to be an October baby,
10:42
Speaker 4: but he was born in July, so he was getting
10:44
Speaker 4: growth charts for July babies instead of October babies. So
10:50
Speaker 4: he was like not even on the growth charts. He was,
10:53
Speaker 4: you know, under zeroth percentile basically, So I think, you know,
11:00
Speaker 4: that was another factor of not finding out sooner. And
11:05
Speaker 4: he yeah, he still wouldn't eat my mouth. We're still
11:11
Speaker 4: doing the n G tube. And around Christmas, so he
11:15
Speaker 4: came home in October and we went to visit my
11:18
Speaker 4: family in Arizona for Christmas. And we were there and
11:24
Speaker 4: I feel so bad because looking back at pictures, you know,
11:27
Speaker 4: I could tell like he was just really skinny. He
11:31
Speaker 4: did not look very well, like his eyes were kind
11:35
Speaker 4: of sunken in, and he kind of has these little
11:38
Speaker 4: divots like me anyway, the little folds, but they looked
11:41
Speaker 4: like really sunken in. And he was starting to like
11:46
Speaker 4: throw up more after eating. And this was twenty twenty one,
11:53
Speaker 4: so it was around COVID time and a lot of
11:59
Speaker 4: us had started to get sick it probably because of COVID.
12:04
Speaker 4: And then he sort of have leakage from his ears,
12:08
Speaker 4: so we're worried about a ear drum rupture. So we
12:13
Speaker 4: went into the er because I didn't really have an
12:16
Speaker 4: urgent care and I had a nephew who was dealing
12:20
Speaker 4: with a lot of ruptured ear drums, and so she's like, oh,
12:22
Speaker 4: I would just take him in. So he went in
12:26
Speaker 4: and they're like, oh, yeah, his ears are totally fine,
12:30
Speaker 4: but he looks really bloated, and I'm like, he's always
12:33
Speaker 4: this bloated, like this is his normal. He has a
12:37
Speaker 4: nice cute, little puppy belly. And I took an X
12:40
Speaker 4: ray and I wish I had it. I could send
12:44
Speaker 4: you a picture of it. But it I was like,
12:47
Speaker 4: are those his lungs? Because his colon was like totally
12:51
Speaker 4: into like his chest cavity, like it had to have
12:54
Speaker 4: been affecting his breathing and everything. It's a miracle he
12:58
Speaker 4: didn't perforate about that he didn't have a really scary
13:02
Speaker 4: case of enterocolitis or that he went into like he
13:07
Speaker 4: had sepsis because it was just so full And they're like, no,
13:12
Speaker 4: those are those are that's his colon? Those are not
13:15
Speaker 4: his lungs. You know, I've never seen an ex rat.
13:18
Speaker 4: I've seen many X rays since, so I can read
13:21
Speaker 4: them a little bit better now, but it was crazy.
13:25
Speaker 4: And so then they had some surgeons come and try
13:29
Speaker 4: to use the catheter to try to give him a
13:34
Speaker 4: colonic flush like an irrigation. There's a lot of different
13:38
Speaker 4: terms for that. And then they're like putting it in
13:44
Speaker 4: and it just like shot all the way like across
13:47
Speaker 4: the room, like got on the doctors, got on the walls,
13:50
Speaker 4: and they just kind of laughed and were like, yep,
13:53
Speaker 4: that's classic hershprungs. Like he definitely has something going on.
13:59
Speaker 4: And so since we were in Arizona, I didn't want
14:04
Speaker 4: to do like a ton of tests because I really
14:07
Speaker 4: love our hospital that we're by now in Utah. We're
14:09
Speaker 4: at Primary Children's Hospital, which you know, people come from
14:13
Speaker 4: surrounding states just to be seen there. And one of
14:19
Speaker 4: the surgeons that we were speaking with had actually trained
14:24
Speaker 4: with one of the GI surgeons in a Primary children
14:30
Speaker 4: so he was familiar with them. He was familiar with
14:33
Speaker 4: the team, and Primary Children's has a really great colorectal clinic.
14:38
Speaker 4: I've loved working with them. But so then they like
14:42
Speaker 4: sent us home with trying to do flushes and also
14:46
Speaker 4: starting doing flushes at the hospital. All of a sudden,
14:49
Speaker 4: Jack wanted to eat his bottles, and you know, we
14:53
Speaker 4: were able to take out his and YouTube because we
14:57
Speaker 4: were finally clearing things out. A poor kid wasn't so
15:01
Speaker 4: bloated and backed up anymore. So we did meet with
15:05
Speaker 4: our doctors in Utah and they wanted us to start
15:10
Speaker 4: doing you know, multiple flushes a day, which was really hard.
15:14
Speaker 4: And then at that point I stopped pumping because it
15:18
Speaker 4: was so much work. I mean, for anyone who has
15:22
Speaker 4: ever had to pump breast milk, like it is a
15:24
Speaker 4: full time job, Like you're always pumping, You're dealing with
15:30
Speaker 4: storing all your milk and then all the cleanup of
15:33
Speaker 4: your parts, like it is for me. When a mom
15:37
Speaker 4: is like, oh, I'm just pumping, I'm like, what do
15:38
Speaker 4: you mean? Just like that, that's like the ultimate labor
15:42
Speaker 4: of love. It's so much work. And then adding on
15:47
Speaker 4: like having to do the irrigations multiple times a day.
15:51
Speaker 4: It was just too much. And I my sister, one
15:53
Speaker 4: of my sisters, was like, you know, it's okay, you
15:56
Speaker 4: can stop pumping like you did awesome, And I really,
16:02
Speaker 4: you know, I struggled with fertility. I had Jack early,
16:07
Speaker 4: but I did have a good milk supply, so I
16:10
Speaker 4: had plenty of milk in the freezer, like we had
16:13
Speaker 4: bought like a big freezer just to be able to
16:15
Speaker 4: put a bunch of breast milk away because I had
16:18
Speaker 4: the thirty days where he wasn't even eating any milk.
16:22
Speaker 4: So I finally stopped pumping so that I could just
16:25
Speaker 4: focus on all of Jack's medical stuff. And we tried
16:30
Speaker 4: so hard, but you know, it was two weekends in
16:33
Speaker 4: a row. Of course, it always happens on a weekend
16:35
Speaker 4: when you can't just like call the clinic and have them,
16:38
Speaker 4: you know, just do like a walk in. And so
16:41
Speaker 4: there was two weekends in a row where we ended
16:44
Speaker 4: up in the er because Jack was really fussy. He
16:47
Speaker 4: was throwing up, he just like didn't seem like he
16:51
Speaker 4: was doing well. And then after the second time, the
16:57
Speaker 4: doctor was like, you know what, I think we should
17:00
Speaker 4: really just give him a colostomy. Like his colon was
17:03
Speaker 4: just so stretched out that like we couldn't like trying
17:07
Speaker 4: to get the catheter in it just like kept it
17:10
Speaker 4: just was not working for us. And so that was
17:14
Speaker 4: like scary to think, oh my gosh, now I'm gonna
17:17
Speaker 4: have to figure out how to deal with the colossomy, like, well,
17:20
Speaker 4: this effect is crawling, is development all this stuff. But
17:25
Speaker 4: it actually ended up being like the best thing that
17:28
Speaker 4: we did for him because he really started to thrive
17:32
Speaker 4: after getting his colostomy. So he was six months old
17:37
Speaker 4: when he got that colostomy, and you know, I joke
17:42
Speaker 4: about how I'm like an unofficial nurse now because I
17:45
Speaker 4: can place an ENNG tube. I know how to deal
17:48
Speaker 4: with colossomies and like help with the skin on colossomies,
17:54
Speaker 4: all these things that I never thought I would learn.
17:57
Speaker 4: And I'm just grateful that I I really had an
18:00
Speaker 4: awesome anatomy school teacher in high school so that I
18:05
Speaker 4: actually paid attention and wanted to like do well in
18:08
Speaker 4: the class because I loved her. So shout out to
18:12
Speaker 4: missus Blackburn from Mountain View High School. Because then even
18:19
Speaker 4: just having the doctors talk to me about all these
18:21
Speaker 4: different things, like I'm like, oh, yes, I know what
18:23
Speaker 4: that is. I know these basic terms, so I mean
18:27
Speaker 4: basic for doctors, but not really basic for everyone else.
18:33
Speaker 4: So that was the nice little journey. And people were like,
18:38
Speaker 4: oh my gosh, I bet it's so hard having colostomy
18:40
Speaker 4: and really for us. In some ways it was easier
18:45
Speaker 4: than dealing with diapers, and in other ways, yes, it
18:50
Speaker 4: was hard. So we were lucky and we didn't have
18:54
Speaker 4: like a ton of skin issues around his stoma. And
18:57
Speaker 4: for people who don't know, the stoma is just like
18:59
Speaker 4: the part of the intestine that is outside of the body.
19:05
Speaker 4: And I was able to like really keep his skin
19:10
Speaker 4: around his stoma clean and clear, and we didn't ever
19:15
Speaker 4: really have really bad rashes or anything to deal with.
19:19
Speaker 4: And we did end up buying a whole bunch of
19:21
Speaker 4: extra bags because so you have to do something with
19:27
Speaker 4: a colossomy bag called like burning the bag, which you
19:32
Speaker 4: know is so pleasant, but basically the gas gets trapped
19:36
Speaker 4: in the bag, so you just have to open it
19:38
Speaker 4: every so often to let the gas out. And you know,
19:43
Speaker 4: with Hirshprungs, I feel like he's a little more gassy anyway, definitely.
19:48
Speaker 4: So yeah, and even when we had the bags that
19:52
Speaker 4: you know, we're supposed to help let gas escape a
19:55
Speaker 4: little bit easier, we still had to do it. And
19:58
Speaker 4: we bought more bags too, because if there ever was
20:02
Speaker 4: like a really full bag. We did a two piece
20:04
Speaker 4: system for him, so he would have like a like
20:08
Speaker 4: basically a giant bandage, and then it had a circle
20:12
Speaker 4: that was kind of like a clip in piece where
20:15
Speaker 4: you'd grab a bag and you could clip it in.
20:17
Speaker 4: So if you ever had a really full bag, we
20:20
Speaker 4: would just replace the whole bag, and that was like
20:24
Speaker 4: easier than trying to you know, take it off and
20:28
Speaker 4: clean it out and all that, and that works great
20:32
Speaker 4: for us. So in a lot of ways, it's like, oh, whatever,
20:35
Speaker 4: have to change his diaper. It's just like a wet diaper,
20:38
Speaker 4: and then you know, the poop is already all in
20:41
Speaker 4: a bag for me if I need to throw it away.
20:44
Speaker 4: But if you have ever dealt with a cloth to
20:48
Speaker 4: me blowout, I'm like, those blowouts are the worse because
20:53
Speaker 4: they kick everywhere, especially you know six month old on
20:59
Speaker 4: their tummial lot. It's it's like all over, it's insane.
21:06
Speaker 4: But he did really well, and since he was born early,
21:11
Speaker 4: we also were having services from like our local early
21:16
Speaker 4: intervention for you know, physical therapy, occupational therapy, feeding therapy.
21:23
Speaker 4: So he was receiving all these services and he was
21:26
Speaker 4: delayed in some of his like gross motor and stuff.
21:29
Speaker 4: But I don't think that that was tied to having
21:34
Speaker 4: a colostomy bag, because I know, I see a lot
21:37
Speaker 4: of parents worried about like, oh, is this going to
21:41
Speaker 4: affect their ability to crawl or do tummy time? And
21:45
Speaker 4: I was nervous about that, but he really didn't seem
21:47
Speaker 4: to care. Like even just like being on his tummy,
21:51
Speaker 4: laying on his stoma didn't bother him. And you know,
21:57
Speaker 4: I mean he didn't officially walk to he was two,
22:01
Speaker 4: and I think part of that was like a stubbornness thing,
22:06
Speaker 4: but you know, he still was able to just be
22:10
Speaker 4: a normal baby, normal kid type of thing. And so
22:17
Speaker 4: then he was finally gaining weight, he got back on
22:20
Speaker 4: the growth charts. I thought he was chunky, but now
22:25
Speaker 4: I really do have a super chunky baby, and I'm like,
22:28
Speaker 4: oh my gosh. Jack was not chunky. But I remember
22:31
Speaker 4: sending videos to my mother in law and being like, look,
22:34
Speaker 4: Jack's getting chunky. But really he was just looking healthy.
22:41
Speaker 4: And he had his cost to me for six months
22:43
Speaker 4: and then we went to primaries for his reversal and
22:50
Speaker 4: his pull through surgery. So they had already taken out
22:55
Speaker 4: most of the affected colon and like kind of done
22:58
Speaker 4: the testing to see where that stop line of where
23:06
Speaker 4: his intestines were healthy versus unhealthier, like is it egg.
23:11
Speaker 2: Ganglionic, yeseganglonic cells of where the effects of the sort
23:18
Speaker 2: of keep going up until you find them.
23:20
Speaker 4: Yeah, And it was interesting. I you know, you picture
23:25
Speaker 4: just like a flat street line of like here's where
23:28
Speaker 4: it does have a cell, and here's where it's missing.
23:30
Speaker 4: But like no, it's like a candle, you know, it
23:33
Speaker 4: like drips down with the wax. So it's like, you know,
23:36
Speaker 4: you could find cells here, but then you go just
23:39
Speaker 4: around then it's like not there. So they had done
23:45
Speaker 4: most of that when they were giving him his colostomy,
23:50
Speaker 4: and so his surgery was fairly quick. And I mean
23:56
Speaker 4: having to do irrigations is is not fun for anyone involved.
24:03
Speaker 4: Like I hated doing it for Jack because you know,
24:06
Speaker 4: we have one parent or one person like holding your
24:10
Speaker 4: child down, and he was young enough that he doesn't
24:14
Speaker 4: fully understand like, hey this, I know this really sucks.
24:18
Speaker 4: This is not fun, but it is going to help
24:21
Speaker 4: you feel better, Like it's going to help you tell
24:22
Speaker 4: me feel better, Like he couldn't understand that, and so
24:28
Speaker 4: like having to do that, and it also just it's
24:32
Speaker 4: like such a violating thing, like having to put something
24:35
Speaker 4: up your child's bum, like you just it's just not
24:39
Speaker 4: a fun experience for anyone. And so that already didn't
24:45
Speaker 4: like and you know, my husband would travel often for work,
24:49
Speaker 4: so it was always crazy, like We've had neighbors come,
24:53
Speaker 4: I've had family, I've had friends where nurses come help
24:57
Speaker 4: me when my husband has been out of town. But
25:02
Speaker 4: I became an expert of it, right. And then so
25:06
Speaker 4: after his surgery, you know, they have to do the
25:09
Speaker 4: anal dilations, and that for me was the absolute hardest thing,
25:16
Speaker 4: the worst thing, because again it feels like you're violating
25:21
Speaker 4: your child's and you hate seeing them like feel that pain.
25:27
Speaker 4: And also for him, it's like you would you would
25:30
Speaker 4: insert it and he'd be freaking out and then you
25:32
Speaker 4: could just like see him totally disassociate, which was just heartbreaking.
25:40
Speaker 4: But then you don't want any issues to happen later,
25:44
Speaker 4: so of course you're doing it because you know you
25:47
Speaker 4: don't want to cause pain that lasts even longer. So
25:52
Speaker 4: just a heads up for parents who are going to
25:55
Speaker 4: have to go through that. It is not fun, it
25:58
Speaker 4: is horrible, but we did it, and his like scar
26:06
Speaker 4: tissue and everything has been always looking great, so do it. Yeah,
26:17
Speaker 4: and then you know, you deal with the crazy wicked
26:23
Speaker 4: diaper rash because he was still in diapers at this time,
26:28
Speaker 4: and I like I remember trying to like prep his skin.
26:34
Speaker 4: That was like a waste of time. It's like the
26:38
Speaker 4: diaper rash. Just I also feel like I'm a diaper
26:42
Speaker 4: rash expert now for when I have friends, we're like,
26:46
Speaker 4: oh my gosh, my baby's mom is like so sore,
26:50
Speaker 4: and I'm like, well, first of all, that is nothing.
26:52
Speaker 4: Just look at a Hirshbrungs kiddo after having a pull
26:56
Speaker 4: through surgery. But you know, then I have all these
27:01
Speaker 4: tips and things of how to help that diaper ash.
27:05
Speaker 4: But so we dealt with that, of course, and luckily
27:11
Speaker 4: he had his pull through in the summertime, so we
27:15
Speaker 4: did have a lot of outdoor free bum to the
27:21
Speaker 4: airtime to help. And I still had a lot of
27:27
Speaker 4: breast milk, so I would give him breast milk baths
27:29
Speaker 4: to like help with that. A lot of breast milk
27:34
Speaker 4: that I didn't put in the freezer early enough or
27:38
Speaker 4: had thought, and you know, so I couldn't feed it
27:40
Speaker 4: to him. So I had all the I mean, I
27:42
Speaker 4: still think I have some breast milk for him. So
27:46
Speaker 4: that's so, yes, I did a lot. I mean he
27:49
Speaker 4: had it for like the first nine months of life,
27:51
Speaker 4: which is pretty crazy. And then you know, after all
27:58
Speaker 4: the diaper rash stuff, then we entered into the phase
28:03
Speaker 4: of trying to balance balance out if he needed you know,
28:08
Speaker 4: more laxatives or more fiber or both, which you know,
28:13
Speaker 4: anyone with hers sprungs like that is a whole journey
28:17
Speaker 4: trying to figure out the perfect little setup for your body.
28:22
Speaker 4: And it's hard because every single person is different. So
28:28
Speaker 4: just something that worked for us, does it mean it's
28:31
Speaker 4: gonna work for somebody else. And then again we're still
28:36
Speaker 4: doing all the flushes. And after his his pull through
28:40
Speaker 4: surgery site was healed enough, and you know, we tried
28:49
Speaker 4: x Lax for him, the little chocolate squares, we tried senna,
28:55
Speaker 4: We tried a few different things that I remember. It
28:59
Speaker 4: was hard getting him to take it because he's you know,
29:01
Speaker 4: one around this time, and you know, he did like medicine,
29:09
Speaker 4: but it was like the like super flavored medicine that
29:14
Speaker 4: you know we're all against now these days. And he
29:23
Speaker 4: he did the best with the Xlax chocolates, you know,
29:29
Speaker 4: because it was a little chocolate. Uh yeah, but you know,
29:35
Speaker 4: he would just get like a really bad diarrhea, and
29:38
Speaker 4: so it was like trying to find like, oh, does
29:41
Speaker 4: he need half a square? Does he need to do
29:43
Speaker 4: every other day? And we got to the point where
29:49
Speaker 4: we were doing it like every other day, and then
29:51
Speaker 4: eventually we went to like if he went a day
29:56
Speaker 4: without pooping, then I would give him xlax that night
30:01
Speaker 4: so that we didn't have anything getting backed up because then,
30:06
Speaker 4: like he we're still dealing with bad diaper rash because
30:09
Speaker 4: he just he his poop just ends up being soft.
30:13
Speaker 4: And so it was just like a lot for his
30:16
Speaker 4: system and trying to get fiber and that kid was
30:19
Speaker 4: just like so hard. I mean, we tried Meta musil I.
30:25
Speaker 4: There was a company that does food preservation stuff and
30:31
Speaker 4: they have pecked in without citric acid, and I really
30:35
Speaker 4: wanted to find it pecked in without citric acid because
30:38
Speaker 4: you know, he seems so sensitive to you know, fruits
30:43
Speaker 4: and stuff that had a little more acidic properties. And
30:48
Speaker 4: then just reading in all the Hirschbrungs groups, you know,
30:52
Speaker 4: some people just were really against having this citric acid
30:56
Speaker 4: and pecked in. But it was hard to find, especially
30:58
Speaker 4: at the time, and so oh, I wish I had
31:01
Speaker 4: the company's name off the top of my head, but
31:03
Speaker 4: I had emailed them saying like, hey, my son has hirshbruns.
31:10
Speaker 4: The community has like mentioned you a few times, like
31:14
Speaker 4: could I possibly buy some? And they sent me this
31:17
Speaker 4: really big sample and it lasted me a really long time.
31:21
Speaker 4: I think we actually have a little bit of it left.
31:24
Speaker 4: But they're just really awesome about it because I think
31:28
Speaker 4: they only sold things in like really large bags because
31:32
Speaker 4: it's you know, food preservation on like a larger scale,
31:36
Speaker 4: not really like for homes, and but like still trying
31:42
Speaker 4: to get him to take it. It's like you're trying
31:44
Speaker 4: to get them to take it fast so it doesn't
31:46
Speaker 4: really get all gelatinous and thick. But then you know
31:52
Speaker 4: you're trying to find out like, oh, should I put
31:53
Speaker 4: it in juice and have them drink it? Should I
31:55
Speaker 4: try to mix it in apple sauce or yogurt? You know,
31:58
Speaker 4: just trying seriously anything you can just to get your
32:02
Speaker 4: your little kid to take it.
32:04
Speaker 6: I'm like, just just down it, like just don't even
32:07
Speaker 6: think about it. Yeah, And that did help, but you know,
32:12
Speaker 6: it was hard to be consistent with it, because I
32:14
Speaker 6: would make some for him and he would start to
32:17
Speaker 6: eat it and then he.
32:19
Speaker 4: Would just be like, I don't want it anymore. So anyway,
32:26
Speaker 4: but we did get to a point where he just
32:30
Speaker 4: with like diet and trying to get more fiber in
32:32
Speaker 4: his diet, you know, so switching like maybe we don't
32:35
Speaker 4: eat white bread as much. We're gonna get more whole grain,
32:39
Speaker 4: so adding that fiber. But are cereal options that are
32:44
Speaker 4: whole grain cereals rather than you know, your classic you know,
32:51
Speaker 4: tasty and delicious, you know, fruity pebbles or whatever, which
32:57
Speaker 4: side note is rough on a hirs Sprung's diet us
33:00
Speaker 4: his system. So we dealt with all that, and we
33:07
Speaker 4: were really lucky because we got to a point where
33:10
Speaker 4: he doesn't need a daily laxative anymore, but if he
33:15
Speaker 4: does go a little bit without pooping, we do have
33:18
Speaker 4: it on hand to give it to him just to
33:21
Speaker 4: help keep things moving. And I think we ended up
33:25
Speaker 4: using It's one of the pills and it's like a
33:31
Speaker 4: really small dose. But it's been a minute since we've
33:36
Speaker 4: had to use it. So I want to say it
33:38
Speaker 4: starts with the d I don't know, but he just
33:46
Speaker 4: like any other laxative was just too intense for his system.
33:49
Speaker 4: So we ended up going with like a is it
33:52
Speaker 4: like ducal lax or something? Is is more gentle for him?
33:58
Speaker 4: And you know, he has since graduated from the colorectal
34:06
Speaker 4: clinic like last year, I believe, So we just go
34:13
Speaker 4: see them once a year now just to you know,
34:17
Speaker 4: get his X ray, make sure things are going well.
34:23
Speaker 4: And I know it's more common for hirsch Brun kiddos
34:26
Speaker 4: to potty train later, and also it's just normal for
34:32
Speaker 4: boys to potty train later. So I had another baby
34:39
Speaker 4: this last June, and Jack was still in diapers when
34:45
Speaker 4: she came home, and I, you know, I tried so
34:47
Speaker 4: many things to get Jack to want to go to
34:51
Speaker 4: the bathroom, but he takes after both me and his
34:57
Speaker 4: father and his very stubborn, so he like I tried bribery.
35:04
Speaker 4: I tried the like just don't have them wearing any
35:07
Speaker 4: pants or underwear type of thing, like so many things
35:10
Speaker 4: I got I'm a toddler toilet because I'm like, well,
35:13
Speaker 4: maybe he's scared of the of the tall normal toilet,
35:17
Speaker 4: and you know, his correctal doctor's like, well, you should
35:20
Speaker 4: have a seat for them. Too, because you know, toilets
35:23
Speaker 4: are not made for little little bodies. So and then
35:29
Speaker 4: we also got a bidet hose attachment because the the
35:35
Speaker 4: doctor was like, well, because I with the with the
35:39
Speaker 4: toddler potties, I really didn't want to have to buy
35:41
Speaker 4: little bag inserts. I mean, I'm not perfect, but I
35:45
Speaker 4: try to be a little kinder to the environment. And
35:50
Speaker 4: you know, Jack's already been in diapers for forever, so
35:53
Speaker 4: sorry Mother Earth, but I really didn't want to do
35:57
Speaker 4: the bags. And she's like, well, you could just get
35:59
Speaker 4: a day attachment, like That's what I did for my kids,
36:02
Speaker 4: And that has actually been really helpful because now when
36:06
Speaker 4: Jack does have like smears or accidents, like it's already
36:10
Speaker 4: attached to the toilet, I can like spray out his underwear.
36:13
Speaker 4: I've had sisters be like, why don't you just throw
36:15
Speaker 4: it away, and I'm like, listen, he has hersprungs. We
36:19
Speaker 4: do with this almost daily, like I can't afford to
36:22
Speaker 4: just buy him new underwear everything all week. And you know,
36:28
Speaker 4: granted's some accidents are bigger than others, but then I
36:33
Speaker 4: don't get grossed out that I'm like trying to clean
36:35
Speaker 4: out his underwear and a sink, you know. Anyway, So
36:41
Speaker 4: it wasn't until shortly after our daughter Juniper was born
36:46
Speaker 4: that all of a sudden he was interested in using
36:51
Speaker 4: the toilet. So we're like, okay, we are hopping on
36:54
Speaker 4: this train. He's ready, and he did pretty well. But yeah,
37:00
Speaker 4: the poop was a struggle. Like it's hard because you
37:05
Speaker 4: can't explain to me still fully like what he's experiencing.
37:09
Speaker 4: And of course for him it's like a normal experience,
37:12
Speaker 4: so I don't think he even thinks to mention different things.
37:19
Speaker 4: But you know, I think it's a lot like, oh,
37:22
Speaker 4: he feels like he has to go, he has to go,
37:25
Speaker 4: so you know, go to the toilet immediately because whenever
37:30
Speaker 4: he tries to hold on it, he can't. And he
37:35
Speaker 4: does still have like more of the softer side of poop,
37:40
Speaker 4: so you know the joke of like never trust a
37:45
Speaker 4: fart when you have her sprungs because oftentimes he's a
37:51
Speaker 4: little sharp happening. And we have since found these little
37:58
Speaker 4: liners because I know some parents we'll get like pantyliners
38:01
Speaker 4: and stuff. I don't love the idea of Jack having
38:07
Speaker 4: to use those, just like as far as like peers
38:11
Speaker 4: like I don't know, I get really nervous about him
38:14
Speaker 4: and his peers later on in school when he's older.
38:18
Speaker 4: And also I don't always love the chemicals that are in,
38:21
Speaker 4: you know, feminine hygiene products, and so I did find
38:26
Speaker 4: in the Hirshbrungs group. There's a few on Facebook, but
38:31
Speaker 4: there's it's kind of funny, but they're called skitties, and
38:34
Speaker 4: I'm like, that's kind of mean, like still.
38:37
Speaker 2: The best name of the world, Like hersh run kids.
38:40
Speaker 4: You know, they get skid marks often, and we're calling
38:44
Speaker 4: these thing skitties. But you know, they they are nice
38:49
Speaker 4: because they are thick enough to keep his underwear safe,
38:54
Speaker 4: but thin enough that he doesn't really notice them, like
38:58
Speaker 4: it just it feels like caught and it's like a
39:00
Speaker 4: stretchy feeling cotton. But there have been a few times
39:04
Speaker 4: that you know, at school they've had to help him
39:08
Speaker 4: change his underwear and they didn't like like warm it
39:16
Speaker 4: up as they're like trying to rub it into the underwear,
39:18
Speaker 4: and so it got like stuck to his skin. So
39:21
Speaker 4: I'm like, well, luckily I still have adhesive remover spray
39:25
Speaker 4: from when he had of colostomy, because it's the poor guy.
39:28
Speaker 4: It got super stuck to his skin and in sensitive areas.
39:34
Speaker 4: I'll just say, and he yeah, I think it was
39:38
Speaker 4: traumatized from that for a little bit. But those are
39:42
Speaker 4: a really great option. They really saved because you can
39:44
Speaker 4: just peel it off and throw it away, and you know,
39:49
Speaker 4: it just saves laundry and saves underwear sometimes. And I
39:58
Speaker 4: mean he's been doing pretty great. We still have many
40:03
Speaker 4: poop episodes. You know, it's still like a learning curve
40:09
Speaker 4: for him, and also trying to figure out like things
40:14
Speaker 4: that he's more sensitive to in his diet, trying to
40:17
Speaker 4: avoid it, like we have a constant battle, like he
40:20
Speaker 4: loves sugar like most kids, and trying to remind him, hey,
40:25
Speaker 4: you can't just eat a whole bunch of candy because
40:28
Speaker 4: it really wrecks your system. And like I remember there
40:32
Speaker 4: was one not this last Thanksgiving, but the one before.
40:37
Speaker 4: Jack's cousin had been trigger treating and got a ton
40:42
Speaker 4: of kids, Like, seriously, I've never seen a kid with
40:45
Speaker 4: so much candy after Halloween, and she just like had
40:48
Speaker 4: a pile of candy in her room and Jack would
40:51
Speaker 4: go in there and get candy and go to a
40:55
Speaker 4: different cousin each time to be like, hey, can you
40:59
Speaker 4: open this for me, So he had had so much candy,
41:03
Speaker 4: and of course he was like full, so he wasn't
41:05
Speaker 4: eating any of the food from Thanksgiving and that was
41:09
Speaker 4: probably the sickest he's ever been. Like usually when we
41:12
Speaker 4: would need to start doing irrigations for him, because you know,
41:15
Speaker 4: if your kid gets if you get like a respiratory illness,
41:20
Speaker 4: sometimes it can affect your digestive system and everything when
41:23
Speaker 4: you have hirshprungs. And anytime we would have to start
41:28
Speaker 4: doing irrigations, it was only for like a couple days
41:31
Speaker 4: at most. But after that Thanksgiving it was like I
41:36
Speaker 4: almost took him to the hospital several times because he
41:40
Speaker 4: was just like sick for like a full week and
41:44
Speaker 4: like the sickest he's ever been. But you know, like again,
41:49
Speaker 4: luckily we have an amazing colorectal clinic and so I
41:53
Speaker 4: talked to them a lot. They called me a lot
41:55
Speaker 4: to check on him, so we didn't end up having
41:58
Speaker 4: to go to the hospital or anything, but it was
42:01
Speaker 4: it was intense. So now I'm like, he's old enough
42:04
Speaker 4: that he kind of remembers like, oh, yeah, I got
42:07
Speaker 4: really sick. I'm like, yeah, you can't just eat a
42:09
Speaker 4: whole bunch of candy, like you get super gurgly, really loud,
42:15
Speaker 4: really bloated, and it hurts, and but you know that
42:20
Speaker 4: sugar is just hard to say now too. But yeah,
42:26
Speaker 4: that's that's basically how it's been for him. We're still
42:30
Speaker 4: learning things and figuring things out. And I you know,
42:38
Speaker 4: since he only went to preschool, but in the States,
42:42
Speaker 4: they have something called a five oh four plan when
42:45
Speaker 4: they're in like a public school, and so it's like
42:47
Speaker 4: accommodations and I wanted to get it started early. So
42:51
Speaker 4: I mean, at this stage in preschool, a lot of
42:55
Speaker 4: the kids need help with going to the bathroom. It's
42:58
Speaker 4: common for kids to have accident and still but I
43:02
Speaker 4: got that in place so that later on down the
43:05
Speaker 4: road it's already kind of in the system to be like, hey,
43:10
Speaker 4: like teachers can't tell him he can't go to the bathroom,
43:13
Speaker 4: like if he needs to go to the bathroom, like
43:16
Speaker 4: he needs to be able to go or you know,
43:19
Speaker 4: have access to maybe the nurse's restaroom if he wants
43:22
Speaker 4: more privacy, because you know, when he goes poop, it's
43:27
Speaker 4: often quite loud, and you know, it's it's fine. In
43:31
Speaker 4: the family, we joke about it and laugh about it
43:33
Speaker 4: sometimes like oh my gosh, mom, did you hear it
43:36
Speaker 4: that time? But you know, maybe some peers will make
43:41
Speaker 4: fun of him for it, and hopefully he has a
43:43
Speaker 4: good sense of humor and just can laugh it off
43:46
Speaker 4: and be like whatever, like I have hushbrungs, get over it.
43:49
Speaker 4: But you never know. And I do like giving there's
43:55
Speaker 4: like a children's book about a boy with hirshprungs, and
43:58
Speaker 4: so I like to kind of give that to the
44:02
Speaker 4: teacher and the classroom just so his friends and stuff
44:06
Speaker 4: get to kind of learn about, oh, you have something
44:10
Speaker 4: different and it makes it a little different. So yeah,
44:15
Speaker 4: that's kind of what we do. And he's only in preschool,
44:18
Speaker 4: but it's been it's been good so far.
44:21
Speaker 2: Yeah, it's fantastic. Thank you so much for the sharing
44:25
Speaker 2: his story. There's some really good points in that, especially
44:28
Speaker 2: when it comes to diet, because I think that's something
44:31
Speaker 2: that certainly in this show I don't think I've quite
44:35
Speaker 2: touched on enough, but you've brought up some really really
44:38
Speaker 2: good points there. And as you say, everybody's different, I
44:43
Speaker 2: guess that's the frustrating thing that you can't say. It'd
44:46
Speaker 2: be great if we had a list of things we
44:47
Speaker 2: can have and a list of things fun and then
44:50
Speaker 2: you just know, but it's it's so frustrated because everyone's different.
44:56
Speaker 2: So I guess it's just been a sort of trial
44:57
Speaker 2: and error process.
44:59
Speaker 4: Yeah, us for sure. And it's been different too from
45:05
Speaker 4: you know, when he was wearing diapers, I would try
45:08
Speaker 4: to avoid like orange juice or pineapples or mangos because
45:12
Speaker 4: you would end up getting really bad diaper rash from that.
45:17
Speaker 4: But now that he's not in diapers, he can like
45:20
Speaker 4: handle it because you know, he's going into the toilet
45:23
Speaker 4: and it's not sitting on his skin, so.
45:28
Speaker 2: You know, acting and then just kind of just just finally,
45:33
Speaker 2: I guess in terms of the future for Jack, I
45:38
Speaker 2: know you said he's going to sort of going to
45:42
Speaker 2: school and sort of the hopes for him for there,
45:47
Speaker 2: But what do you kind of see future wise or
45:50
Speaker 2: hope future wise for him?
45:54
Speaker 4: Well, we are moving soon, so we're kind of in
46:00
Speaker 4: this mode of you know, do we travel back to
46:03
Speaker 4: Utah to meet with the coorectal clinic here like once
46:06
Speaker 4: a year because we still have family in Utah, or
46:10
Speaker 4: we'll be in South Carolina, so the closest like good
46:14
Speaker 4: program by US would be Atlanta, Georgia, So or do
46:19
Speaker 4: we like go there and kind of set up setup
46:23
Speaker 4: shop down there now? And I know a lot of
46:26
Speaker 4: the times in the US, they'll kind of want to
46:29
Speaker 4: start with their own tests and everything, and it's like,
46:32
Speaker 4: I don't know if I want to put him through
46:35
Speaker 4: all those you know, very amenemas and all those types
46:39
Speaker 4: of things. Again, so especially where he's technically graduated from
46:46
Speaker 4: the corectal clinic here. But yeah, I think we try
46:52
Speaker 4: to approach his experience with just an open mind and
46:59
Speaker 4: knowing that again, like there's a lot of people who
47:04
Speaker 4: have hirsh bruns, but we all have different experiences with it.
47:10
Speaker 4: You know, some are more you know, severe cases and
47:16
Speaker 4: some are more similar to Jack, where you know, every
47:21
Speaker 4: day living isn't like totally different from any other person,
47:30
Speaker 4: just a little more accidents. But I hope that we
47:35
Speaker 4: can help him, you know, have pride and how his
47:39
Speaker 4: body is different and how like and approach things with humor,
47:47
Speaker 4: yeah is the best. Yeah, So I'm like just helping
47:51
Speaker 4: him find a sense of humor about it so that
47:53
Speaker 4: if he does have peers who are unkind, that he
47:58
Speaker 4: can just laugh about it and be like I don't care,
48:01
Speaker 4: like whatever, You're just you're just jealous that you can
48:08
Speaker 4: make this volume when I when you go to the bathroom, okay,
48:14
Speaker 4: but I mean also teaching Jack about how his body
48:18
Speaker 4: is different, kind of like open this huge obsession he
48:23
Speaker 4: has with the human body. Like he can tell you
48:28
Speaker 4: so many different things about you know, all the different systems,
48:33
Speaker 4: and you know we have family. It's like, wow, I
48:36
Speaker 4: didn't even know that. And I'm like, well, don't worry.
48:38
Speaker 4: He still doesn't fully know his ABC's and he can't read,
48:41
Speaker 4: even though he came home the other day and was like, Dad,
48:45
Speaker 4: I have a higher reading level than you look, kunny.
48:51
Speaker 4: But he does love to watch like people on YouTube
48:56
Speaker 4: who have like teaching lessons for different parts of anatomy.
49:00
Speaker 4: He loves to watch those, and they're like for college
49:04
Speaker 4: like students, like and he'll just sit there and watch.
49:06
Speaker 4: So he'll tell you all about you know, the villa
49:10
Speaker 4: I and the intestines and how your epiglottis closes off
49:14
Speaker 4: your trachea when you swallow food, and you know your
49:19
Speaker 4: kidneys have nephrons. I can't remember what they do, but
49:22
Speaker 4: he knows exactly, so you know it's it's created a
49:31
Speaker 4: strong interest of the human body for him. Just then
49:36
Speaker 4: it all started with telling him about his story with Hirshprung's.
49:40
Speaker 2: Oh, it's fantastic. That's so good to hear. But thank
49:43
Speaker 2: you so so much for coming on. It's been it's
49:46
Speaker 2: been a fascinating story. And and I wish well Jack
49:49
Speaker 2: all the best with these science projects and said to
49:53
Speaker 2: you the family all the all the very best for
49:56
Speaker 2: the future. Thank you so much for coming on.
49:58
Speaker 4: Yeah, thanks for having it was fun to share his
50:02
Speaker 4: story again, so.
50:07
Speaker 1: Thank you for listening and being part of this growing community.
50:10
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
50:13
Speaker 1: leave a review, and share it with someone who might
50:15
Speaker 1: need it. You can connect with us on social media
50:18
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
50:24
Speaker 1: See you next week.