Latest / Tom's Hirschsprung's Podcast / Episode 130 - With Andrea Guse

Transcript

Episode 130 - With Andrea Guse · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshbrung's podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirshbrng's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
0:12
Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode, we will explore real stories and honest conversations
0:19
Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in.
0:45
Speaker 2: Hello, and welcome to episode one hundred and thirty of
0:49
Speaker 2: Tom's Hirshbrings podcast. I'm delighted this afternoon and to be
0:54
Speaker 2: joined by Andrea Andrew. Welcome to the podcast.
0:57
Speaker 3: Hi, thanks for having me, Thank.
1:00
Speaker 2: You so much for coming on.
1:03
Speaker 3: Now.
1:03
Speaker 2: We here to talk about your child with hirshbruns and
1:07
Speaker 2: of a total colonic total colonic Hirshbrungs as well, which
1:13
Speaker 2: obviously is is incredibly rare. So to have a very
1:17
Speaker 2: rare condition and then have another very rare diagnosis on
1:21
Speaker 2: top obviously incredibly incredibly rare story. But I guess if
1:29
Speaker 2: you could take us back, well start from wherever you like.
1:33
Speaker 3: Yeah, so he is three years old right now, so
1:37
Speaker 3: I will do my best to rewind and start from
1:43
Speaker 3: the very beginning. So I had a very easy, normal pregnancy.
1:50
Speaker 3: I'm one of those rare ones that loves being pregnant.
1:54
Speaker 3: I had no issues whatsoever, and my water broke naturally,
1:58
Speaker 3: and I headed to the High Hospital and I was
2:01
Speaker 3: doctoring about two hours from my house. So I'm driving
2:05
Speaker 3: over there and everything's fine. We get there and everything
2:09
Speaker 3: happens really fast. I'm you know, dilating fast, and I
2:15
Speaker 3: start pushing way too early and he actually gets stuck
2:19
Speaker 3: in my birth canal and they had to use fourceps
2:22
Speaker 3: to get him out. So I'm telling you this because
2:25
Speaker 3: it's his diagnosis wasn't caught right away, and I feel
2:31
Speaker 3: like it's because of this trauma. So they kept me
2:35
Speaker 3: and him there a couple of days extra just for
2:38
Speaker 3: some observation, and he wasn't eating right off the bat,
2:42
Speaker 3: and so they kind of chalked it up to, you know,
2:45
Speaker 3: like he's had some birth trauma. He's probably got a
2:48
Speaker 3: sore neck, you know, like it doesn't isn't comfortable. So
2:52
Speaker 3: they just dismissed that, and they just encouraged me to
2:56
Speaker 3: pump so that my milk would come in and then
2:59
Speaker 3: keep trying every couple hours and we I think he
3:05
Speaker 3: ate one time total and we still kept having issues,
3:09
Speaker 3: and so they thought maybe he had a tongue tie,
3:12
Speaker 3: and he actually did, so they went and clipped his
3:16
Speaker 3: tongue to get rid of that, and that didn't change anything.
3:20
Speaker 3: So we kept trying and trying. I hadn't worked with
3:24
Speaker 3: different lactation consultants. And a couple of days go by,
3:31
Speaker 3: it's day three and he hasn't pooped yet, he hasn't
3:35
Speaker 3: passed the newborn maconium, and so they're like, well, that's
3:39
Speaker 3: kind of strange, you know, we'll give him a suppository
3:43
Speaker 3: and then when he poops, you can go home. And
3:46
Speaker 3: I was like, okay, well sure, Like this is my
3:50
Speaker 3: first baby, this is my first pregnancy, never been a mom.
3:53
Speaker 3: I didn't know what is normal, what is not normal,
3:57
Speaker 3: you know, like this stuff is not in the baby books.
4:00
Speaker 3: So I think you also naturally trust your care team,
4:05
Speaker 3: like I'm not going to question anything that they're doing. Sod.
4:10
Speaker 3: They give him a suppository, He smears a little bit,
4:14
Speaker 3: and then they're like, okay, well he pooped, you can
4:17
Speaker 3: go home. Everything's great. And I think we were home
4:22
Speaker 3: for five days and I had had another appointment with
4:26
Speaker 3: a lactation consultant to try to get him breastfeeding. And
4:31
Speaker 3: during that appointment, we're talking about how he's still not eating.
4:34
Speaker 3: He's maybe taking I think it was like fifteen milli
4:38
Speaker 3: liters at a time, like just a tiny, tiny amount,
4:42
Speaker 3: and I mentioned like, and he's still not pooping, and
4:46
Speaker 3: she's like, oh, well, that's that's normal. You know, breastfeed
4:50
Speaker 3: babies don't poop every day. And I was like, yeah,
4:53
Speaker 3: but he's like not pooping, and she's she called up
4:58
Speaker 3: my doctor to see if he was a van bulb,
5:01
Speaker 3: and he's like, give it two more days and if not,
5:04
Speaker 3: like we'll give him another suppository. And so we do that,
5:10
Speaker 3: and then I give him this suppository and he actually
5:13
Speaker 3: like poops so much it like shoots across my living
5:16
Speaker 3: room like it's like on a massive, massive amount. So
5:21
Speaker 3: obviously he feels great now, so he starts eating a
5:24
Speaker 3: little bit more. I think he got up to maybe
5:26
Speaker 3: twenty miliwaiters and so it's still not a lot. I'm
5:30
Speaker 3: using like the tiny, tiny baby bottles from hospital, and
5:38
Speaker 3: I took him to the chiropractor a couple of times
5:41
Speaker 3: because I've heard that that can help, you know, getting
5:44
Speaker 3: adjusted can help digestive issues, and he did confirm that
5:49
Speaker 3: he had some neck trauma. So we worked through that
5:52
Speaker 3: and things got better. He never never breastfed yet, but
5:57
Speaker 3: he was. He was feeling better, you could tell. And
6:03
Speaker 3: then another five six days go by and he doesn't poop,
6:08
Speaker 3: and so I call up his doctor and I mentioned
6:12
Speaker 3: that and I said, should I give him another suppository?
6:14
Speaker 3: And he's like, well, no, we don't want him to
6:19
Speaker 3: get dependent on that, like he needs to learn to
6:21
Speaker 3: use his muscles, and kind of made it sound like
6:25
Speaker 3: it was him holding his poop in like not using
6:29
Speaker 3: his muscles, and I thought that was interesting because that
6:33
Speaker 3: I'm like, don't babies just know how to poop? Right?
6:36
Speaker 3: So I ended up getting kind of frustrated with that doctor.
6:43
Speaker 3: So I switched doctors and I took him to I
6:48
Speaker 3: think he was twenty days old, and I took him
6:51
Speaker 3: to a new doctor and I said, this is what's happening.
6:54
Speaker 3: This is what's going on, Like I just feel in
6:58
Speaker 3: my gut that something's not right. And she's like, okay,
7:01
Speaker 3: well how about we take X rays and like if
7:04
Speaker 3: that makes you comfortable, like it all make you feel better,
7:07
Speaker 3: And I said yes, please, and she gives me a
7:10
Speaker 3: call the next day when they get reviewed and there's
7:14
Speaker 3: nothing showing any kind of blockage's there's nothing that is
7:19
Speaker 3: concerning whatsoever. So I'm like, okay, it's just just me,
7:23
Speaker 3: like I'm overreacting. I'm a new mom, you know, I'm whatever.
7:27
Speaker 3: And she also said, give me the line breastfed babies
7:31
Speaker 3: don't poop every day, like it's totally normal, like, don't
7:34
Speaker 3: freak out. So I started keeping a diary of how
7:39
Speaker 3: many days he was going without pooping, and how much
7:44
Speaker 3: he was eating and all of this because I'm just like,
7:46
Speaker 3: something's not normal about this, like I can't put my
7:49
Speaker 3: finger on it. And then day twenty six, He's twenty
7:55
Speaker 3: six days old, and he starts vomiting and it's like
8:00
Speaker 3: so much vomit, like projectile vomiting after every time I
8:04
Speaker 3: try to feed him, and I freaked out. I'm like,
8:08
Speaker 3: I told my husband we should take him to the er.
8:11
Speaker 3: And me and my husband are very you know, I
8:15
Speaker 3: have enough nurse friends to know what constitutes an er visit,
8:19
Speaker 3: you know, like your arms should be falling off. So
8:23
Speaker 3: we're just like, Okay, we're just gonna wait this out,
8:26
Speaker 3: see how it goes. You know, it's probably not an emergency.
8:30
Speaker 3: You know, maybe it's something I ate because he is
8:32
Speaker 3: drinking my breast milk, you know. So we waited out
8:36
Speaker 3: and he's like, if he's still puking in the morning,
8:39
Speaker 3: make an appointment. So I did, because he puked all night.
8:43
Speaker 3: And then as I'm buckling him into the car seat
8:48
Speaker 3: to bring him to this appointment, it turned his vomit
8:52
Speaker 3: turned bright green, and I instantly started panicking because I've
8:57
Speaker 3: never seen that before. I'm like, something's not right, and
9:00
Speaker 3: so I rush them over there. They take more X rays,
9:04
Speaker 3: they can't find anything, and he's vomiting this green stuff
9:08
Speaker 3: the entire time. And she's like, okay, so where I
9:14
Speaker 3: should I should really stop and say where I live
9:18
Speaker 3: is like the middle of nowhere, so like population one
9:22
Speaker 3: hundred people, and so the nearest hospital is twenty minutes away,
9:27
Speaker 3: but they're very rural healthcare. So she blessed her soul
9:33
Speaker 3: was honest enough, sat me down and said, you know,
9:36
Speaker 3: I don't know what's going on and I don't have
9:39
Speaker 3: She's like, I just don't have the knowledge to figure
9:43
Speaker 3: this out. I'm going to give Children's Hospital in two
9:46
Speaker 3: Falls a call and just see what they recommend. And
9:50
Speaker 3: I said, great, sounds good, and she calls them and
9:54
Speaker 3: she sends over the X rays and they're like, we
9:58
Speaker 3: need him on a helicopter asap if she comes back.
10:03
Speaker 3: She tells me that, and I'm just I'm a mess
10:07
Speaker 3: because I'm like, what do you mean, Like is my
10:09
Speaker 3: baby okay? Like excuse me, I did bring my kleenexes.
10:18
Speaker 3: I kind of figured this was gonna happen, so in
10:22
Speaker 3: mind you, I'm four weeks postpartum, so like, I'm just
10:27
Speaker 3: a wreck in the first place, and my baby is
10:33
Speaker 3: supposed to go on a helicopter and I don't know why,
10:36
Speaker 3: Like nobody can tell me what's wrong with him. So
10:40
Speaker 3: I'm just a mess. And so this was several I
10:44
Speaker 3: mean it was ten o'clock when I brought him there,
10:47
Speaker 3: and the helicopter friendly came at too, So this was
10:49
Speaker 3: a while. And I'm breastfeeding, so I don't have anything
10:54
Speaker 3: with me. So I choose to not get on the
10:57
Speaker 3: helicopter with my baby and go home and pack a
11:01
Speaker 3: bag so that I can pump and head to the hospital.
11:06
Speaker 3: And that was really hard to because I wanted to
11:09
Speaker 3: be with my baby. And then I call up my
11:12
Speaker 3: husband and I tell him what's going on. And he's
11:14
Speaker 3: at work hours hours away, So he leaves oric starts
11:19
Speaker 3: heading home so he can pack, and we drive separate,
11:24
Speaker 3: and I get to the hospital and I think, I
11:27
Speaker 3: think all the helicopter they tried and I'm not gonna
11:31
Speaker 3: know that the specific name, but they tried to release
11:36
Speaker 3: air out of his digestive system. They put a two
11:39
Speaker 3: briton down him and nothing, nothing came up, so they
11:44
Speaker 3: took it out. And then I get to the hospital
11:48
Speaker 3: and he's just there in a room by himself, and
11:53
Speaker 3: you know, like there's nothing happening. Well, they had already
11:57
Speaker 3: did the ultrasum, they had already did more X rays,
12:00
Speaker 3: and at this point they think it's pyloric stenosis, which
12:06
Speaker 3: I believe is the valve between your esophagus or your
12:11
Speaker 3: testine and your stomach. Sometimes it needs to be repaired.
12:16
Speaker 3: And so they did the ultrasound and ruled out that
12:21
Speaker 3: it wasn't that stenosis, So they didn't know what was
12:26
Speaker 3: really happening. So they were just kind of observing him
12:30
Speaker 3: at this point. And then his vomits, so he's still vomiting,
12:35
Speaker 3: and mind you, he hasn't aten in two days, so
12:39
Speaker 3: I think that says a lot, and then his vomits
12:43
Speaker 3: had stopped from bright green and they had turned to
12:45
Speaker 3: this orange like foul smell, like it smelled like stool.
12:50
Speaker 3: It was the most rancid smell. I will never forget
12:53
Speaker 3: that smell. And I'm putting the call it on every
12:57
Speaker 3: time this happens, because I'm I'm just losing it. I'm like,
13:01
Speaker 3: what is happening to my baby? Like there's something wrong,
13:05
Speaker 3: and every nurse is just okay, well we'll document it,
13:09
Speaker 3: and I'm just getting so frustrated. And all of a sudden,
13:14
Speaker 3: this nurse walks by, and I refer to my son
13:19
Speaker 3: as my miracle baby, because these miracles just kept happening,
13:29
Speaker 3: and this was the first miracle. So this nurse walks
13:33
Speaker 3: by and she's not even minors, she's not on my wing,
13:38
Speaker 3: she's not taking care of my son. She just happens
13:41
Speaker 3: to walk by and she goes, I recognize that smell.
13:45
Speaker 3: I know that smell. You need to speak to a
13:49
Speaker 3: gi surgeon immediately. And she runs to go get a
13:53
Speaker 3: surgeon and they're like, okay, I'm pretty sure this is hershprungs,
13:58
Speaker 3: Like we need to do a biopsy and test for
14:03
Speaker 3: that and we're going to order, you know, an upper
14:06
Speaker 3: gi study and a contrast enema, and I said, okay,
14:12
Speaker 3: so we do all of that, and so I believe.
14:18
Speaker 3: So it was actually this time three years ago, which
14:22
Speaker 3: is kind of crazy now that I think about it.
14:24
Speaker 3: It was a Memorial Day weekend, and he's like, the
14:28
Speaker 3: biopsy results usually take three to five days, but because
14:32
Speaker 3: it's a holiday, it's going to take even longer. And
14:35
Speaker 3: I said great. So they teach me how to do irrigations,
14:41
Speaker 3: and so we start doing those I think like every
14:47
Speaker 3: four to six hours, and then he it relieved a
14:51
Speaker 3: lot of stool, so he actually started eating again, which
14:54
Speaker 3: is really great. And so they do the biopsy, they
14:58
Speaker 3: do the contrast anema, they don't see anything with that,
15:03
Speaker 3: and then the biopsy comes back positive. So the biopsy
15:09
Speaker 3: tests for ganglion cells being present, and that's what is
15:14
Speaker 3: the nerve cells in your colon that pushes the stool along.
15:20
Speaker 3: So it tested positive that he didn't have those, so
15:26
Speaker 3: he technically had hersprungs. So, but because of his condition
15:31
Speaker 3: and because of how weak he was, they weren't comfortable
15:35
Speaker 3: doing surgery that day. They were actually planning on giving
15:40
Speaker 3: us sending us home for two weeks and doing the
15:43
Speaker 3: irrigations and sending us back to do what's called a
15:47
Speaker 3: pull through proteasure, and then everything went self. He stopped
15:53
Speaker 3: eating again, and the irrigation stopped working, nothing was coming out,
15:58
Speaker 3: and there they just had made the decision Okay, he
16:01
Speaker 3: needs the surgery now, and so we go to the
16:06
Speaker 3: surgery tower at Sanford. Everything's in different buildings, so this
16:13
Speaker 3: is this was interesting to me. I've never i mean
16:17
Speaker 3: I've never had a surgery ever in my life. But
16:20
Speaker 3: I went to the surgery tower and they have what's
16:25
Speaker 3: like a giant family common area. So what was weird
16:30
Speaker 3: for me is that I'm an empass. I pick up
16:32
Speaker 3: on everyone's energy, and it's just like people over to
16:37
Speaker 3: your left are you know, with planned family members, and
16:43
Speaker 3: they're having coffee and they're having cookies and everything's great.
16:46
Speaker 3: Like they're here because they're getting their rotator cuff prepared
16:50
Speaker 3: and they've had this surgery on the books for you know,
16:53
Speaker 3: eighteen months, and they're just ready to get it done.
16:56
Speaker 3: And then there's people over here crying because they're waiting
17:00
Speaker 3: for their grandpa who's having emergency surgery. And it's just
17:06
Speaker 3: I just thought it was the weirdest, most uncomfortable room
17:10
Speaker 3: to ever be in, because it's anyway until we sit
17:16
Speaker 3: down and we're in the waiting room and they're like, well,
17:21
Speaker 3: here's some coffee, here's some cookiesn't And I just I
17:25
Speaker 3: have to laugh because I'm like, I don't even know
17:27
Speaker 3: if my son's okay, Like I don't really care about
17:29
Speaker 3: a cookie. But so they have this at Sanford. They
17:35
Speaker 3: have this text messaging that updates you about the surgery.
17:41
Speaker 3: So we sign up for that and I get my
17:43
Speaker 3: first text message. He's out anesthesia, he's under every everything
17:50
Speaker 3: looks good. Surgery is about to begin. And then they
17:53
Speaker 3: say you'll get a text update every hour. So the
18:00
Speaker 3: hour goes by, I get an update and it said, yep,
18:03
Speaker 3: surgery is going well. Everything looks or going as expected.
18:07
Speaker 3: It was just very generic. And then the next hour
18:10
Speaker 3: goes by and I don't get an update. And he
18:14
Speaker 3: had originally told me it might take three to four hours,
18:18
Speaker 3: so I didn't freak out. And then another the fourth
18:22
Speaker 3: hour goes by and there's no update, and I start
18:27
Speaker 3: freaking out a little bit. And then the nurse calls
18:32
Speaker 3: us and says doctor Keckler and his team want to
18:36
Speaker 3: speak with you guys, and I'm like in shambles because
18:39
Speaker 3: I just have no idea what's happening. And they sit
18:45
Speaker 3: us down. So it's doctor Keckler and doctor Gora, who
18:50
Speaker 3: I am so grateful to God that they are our
18:54
Speaker 3: care team because they are They're incredible. They sit us
18:58
Speaker 3: down and they're like, hey, we just we were, you know,
19:04
Speaker 3: about halfway through the surgery. And so when they when
19:09
Speaker 3: they went into the surgery, their job is to determine
19:16
Speaker 3: how much of the colon does not have those ganglion cells.
19:20
Speaker 3: So they're testing every few centimeters to see what part
19:24
Speaker 3: of the colon still works, what part of the colon
19:27
Speaker 3: needs or doesn't work, so they know where to reconnect everything.
19:31
Speaker 3: And he stops and he's like, I have no idea
19:38
Speaker 3: how your son made it this law.
19:43
Speaker 2: Wow, and he.
19:47
Speaker 3: It is a miracle that he is alive. And he goes,
20:00
Speaker 3: we have tested every part of his large intestine and
20:04
Speaker 3: there is no gangly in celts present. And he said,
20:08
Speaker 3: we are halfway through the small intestine and they're no
20:11
Speaker 3: kangly in cells present. So he's like, we have to
20:17
Speaker 3: at this point, he needs a colostomy and an eliostomy,
20:25
Speaker 3: and so they were kind enough to pull us aside
20:29
Speaker 3: and just give us an update because he said it's
20:31
Speaker 3: going to be another hour or so while we while
20:35
Speaker 3: we performed this part of the surgery. And I said, okay,
20:39
Speaker 3: thank you for letting us know. And I we leave,
20:43
Speaker 3: and I am just a mess. Like I I remember
20:49
Speaker 3: calling my mom and just crying and crying. It was
20:55
Speaker 3: really hard, and I'm just thinking in my brain this
21:00
Speaker 3: whole time, like just kind of angry, you know that
21:06
Speaker 3: nobody's nobody listened to me.
21:11
Speaker 2: Yeah, yeah, I guess that's gonna be the most frustrating
21:14
Speaker 2: part of all.
21:18
Speaker 3: So, yeah, he comes out and comes out of surgery,
21:26
Speaker 3: and we we got to see him, and it's, you know,
21:34
Speaker 3: it's it's horrible. He's you know, he's gray colored, and
21:41
Speaker 3: he's weak and he just doesn't look like my baby.
21:45
Speaker 3: And then it I think the next day I get
21:56
Speaker 3: or no, it was the same day. It's like a
21:58
Speaker 3: couple hours later, I get a new nurse who is
22:03
Speaker 3: the so she's a doctor on our surgical care team,
22:07
Speaker 3: but she's called the stoma nurse. So she comes in
22:11
Speaker 3: and she gives me an hour long lesson on being
22:14
Speaker 3: a stoma nurse and what a stoma is and how
22:18
Speaker 3: to change the bags and how to empty them, and
22:22
Speaker 3: lessons on skincare, and I just I just remember, like
22:30
Speaker 3: at one point, I'm like, I haven't even processed my
22:33
Speaker 3: son getting on the helicopter yet, and it's just been,
22:36
Speaker 3: you know, one thing after another, like irrigations, surgery, stomas,
22:43
Speaker 3: and it was just a lot. And I say that
22:47
Speaker 3: I want to mention that because there is so much
22:50
Speaker 3: trauma that happens to us parents, to my son, yes
22:56
Speaker 3: of course, to also us care takers and parents and
23:03
Speaker 3: a mother. And so I'm just at this point, I'm
23:08
Speaker 3: just going through the motions and I have to add two.
23:12
Speaker 3: So like I'm sitting there during my son's six hour
23:17
Speaker 3: surgery and I'm stepping away every two hours to go pump.
23:21
Speaker 3: So I'm walking back across the street to his room,
23:26
Speaker 3: and it's just it's so much. And I remember thinking
23:31
Speaker 3: at one point, like why am I doing this, Like
23:33
Speaker 3: I should you know, I shouldn't be doing this because
23:37
Speaker 3: it's so much added at it emotionally and so much
23:42
Speaker 3: physically after what I'm going through, Like I didn't even
23:46
Speaker 3: need to I should have just got on that helicopter
23:48
Speaker 3: and stopped, you know, and I learned later that he
23:55
Speaker 3: wouldn't be able to tolerate formula. So I was grateful that
23:59
Speaker 3: I continued breastfeeding because my breast milk was the best
24:04
Speaker 3: thing for him. So I'm glad that I pushed through that.
24:09
Speaker 3: But to rewind a little bit, I in the hospital,
24:14
Speaker 3: I'm going through all this and I'm just kind of
24:18
Speaker 3: I'm in robot mode, you know, I'm just kind of
24:21
Speaker 3: going through the emotions because I haven't really processed any
24:24
Speaker 3: of this. And so we spent a few I think
24:32
Speaker 3: more days there. We were there, start to finish fifteen days,
24:39
Speaker 3: so we go home and we start caring for our
24:46
Speaker 3: new or start our new chapter or whatever. And the
24:51
Speaker 3: way that I understood it was if I if I
24:54
Speaker 3: lived in Sioux Falls, I would have a stone owners
24:58
Speaker 3: come out to my house and helped me with my son.
25:03
Speaker 3: And because I lived where I lived, that wasn't an option.
25:05
Speaker 3: So that is why she had to teach me all
25:08
Speaker 3: the ins and outs, and I'm glad that I did,
25:12
Speaker 3: and it wasn't it wasn't very hard for me because
25:16
Speaker 3: I had in high school, I was a CNA, so
25:19
Speaker 3: I had seen colostomy bigs before I had already knew
25:23
Speaker 3: what to do with them, so that wasn't wasn't too
25:27
Speaker 3: big of a challenge, but learning all the stuff for
25:31
Speaker 3: a baby and going through you know, the insurance, the
25:38
Speaker 3: insurance struggles were a nightmare. I remember. So there was
25:43
Speaker 3: only two options of bags available for infants, and both
25:50
Speaker 3: of them kind of sucked. And so I remember, you know,
25:55
Speaker 3: he would have like if I if I didn't apply
25:58
Speaker 3: it exactly perfectly, or if I use too much powder
26:02
Speaker 3: or too much this, and or if he was a
26:05
Speaker 3: little bit sweaty or rolled the wrong way, like this
26:09
Speaker 3: bag would fall off. And I remember going through you know,
26:13
Speaker 3: ten bags in one day sometimes, and the frustrating part
26:19
Speaker 3: was my insurance would only cover twenty in a month,
26:22
Speaker 3: and I just I was so upset about that, Like
26:26
Speaker 3: the there's been quite a few things on our journey
26:32
Speaker 3: just with powders and creams and things that insurance will
26:37
Speaker 3: not cover that I just am so frustrated by. But
26:44
Speaker 3: that is probably our worst nightmare as a family, just
26:47
Speaker 3: the cost of everything and the financial pressures because it's
26:53
Speaker 3: the insurance part is just not fair at all. But
26:59
Speaker 3: so we we do that and I remember, just about
27:06
Speaker 3: the time that I would get the hang of what
27:08
Speaker 3: I'm doing, he would have a growth spurt and I
27:11
Speaker 3: would need a new bag. So that was that was fun,
27:17
Speaker 3: And so I specifically remember now I'm living in fight
27:22
Speaker 3: or flight mode all the time. I'm like sleeping with
27:26
Speaker 3: one eye open. I'm putting him right next to me
27:30
Speaker 3: in bed because I'm terrified he's gonna rip his bag off,
27:34
Speaker 3: or he's gonna roll onto his bag, or something's gonna happen,
27:38
Speaker 3: and so I'm with him. Twenty four to seven. I
27:42
Speaker 3: remember not going out in public a lot, just because
27:47
Speaker 3: it was a hassle. I remember one time we went
27:53
Speaker 3: to the county Fair on a whim, so I didn't
27:56
Speaker 3: have anything with me, and it's super hot and he
28:00
Speaker 3: starts sweating and the beg starts falling off, and I'm
28:03
Speaker 3: like just in shambles because I just don't know, Like
28:08
Speaker 3: it's just living with high anxiety twenty four or seven,
28:12
Speaker 3: Like you're just waiting for something bad to happen, and
28:15
Speaker 3: it's it's it's rough. And I just want to mention
28:19
Speaker 3: that because I've I've had to do so much work
28:22
Speaker 3: to get out of that and to heal from all
28:26
Speaker 3: of that. I mean, it's it's it's tough on your
28:29
Speaker 3: marriage as well. You know. I remember waking my husband
28:35
Speaker 3: up several times in the night to help me change
28:38
Speaker 3: the bag, you know, because it's a two person job. Honestly,
28:42
Speaker 3: it really is. So yeah, so we So that was
28:50
Speaker 3: our life for eighteen months. Eighteen months is the age
28:56
Speaker 3: that he want, my care team want to him to
29:00
Speaker 3: be when they perform the pull through surgery. So and
29:06
Speaker 3: in a span of time, I am getting married, planning
29:12
Speaker 3: a wedding, and I I feel like I kind of
29:18
Speaker 3: used that as a way to kind of cope through
29:22
Speaker 3: everything because I on the outside, I'm like, oh, this
29:25
Speaker 3: is so much fun, Like I'm getting married, I'm planning
29:28
Speaker 3: a wedding, like everything's great. Life is fantastic. And I'm
29:32
Speaker 3: so I'm just pushing the trauma aside, you know, until
29:36
Speaker 3: him ready to actually deal with what I just went through,
29:40
Speaker 3: which is a lot. And so I get married and
29:45
Speaker 3: on our honeymoon, I actually get it pregnant with our daughter.
29:50
Speaker 3: So by the time surgery runs around, I am seven
29:54
Speaker 3: months pregnant. And so now I'm now I'm wondering, so
30:00
Speaker 3: should I do this surgery now? Or should we wait,
30:03
Speaker 3: because he always said, you know, when the time comes,
30:07
Speaker 3: don't put like, don't expect this to happen. You know,
30:12
Speaker 3: we can push it out until whenever you're ready, Like
30:16
Speaker 3: we can do it when he's five, we can do
30:18
Speaker 3: it when he's seven. You know, we just want him
30:21
Speaker 3: minimum at least eighteen months because of the his build,
30:27
Speaker 3: you know, how he would grow and they would have
30:28
Speaker 3: more intestine to work with. So I made the decision
30:37
Speaker 3: to go ahead and do it now because in my
30:39
Speaker 3: brain I thought, well, I might as well do it now,
30:42
Speaker 3: because what am I gonna do with my second child later?
30:46
Speaker 3: You know, this will just be easier, And it definitely
30:51
Speaker 3: was not. So just to rewind a little bit. So,
30:59
Speaker 3: so in the beginning of his life, I was not
31:02
Speaker 3: able to find daycare, so my mother was watching him.
31:07
Speaker 3: And when I got pregnant with my second child, she
31:10
Speaker 3: had said, you know, I'm not really comfortable with two kids.
31:15
Speaker 3: Can you try to find daycare? And so I had
31:18
Speaker 3: found him a spot in daycare. And once I put
31:21
Speaker 3: him in daycare, he was constantly sick, like every week
31:26
Speaker 3: he was sick, And so when surgery time rolled around,
31:33
Speaker 3: he was sick and he had a small fever, and
31:37
Speaker 3: so I rescheduled a couple times and then we we
31:44
Speaker 3: finally set a date. We head down there. We get
31:46
Speaker 3: a hotel room because you know, you have to be
31:48
Speaker 3: there at like six am, and we wake up and
31:54
Speaker 3: he has a fever, and they're like, we cannot we
31:58
Speaker 3: cannot move forward. Like we're through the PreCheck, we're through
32:02
Speaker 3: the meet with anesthesia, we're through everything, and they took
32:06
Speaker 3: his temperature and he had a fever, and they're like,
32:08
Speaker 3: we can't perform the surgery. And I remember being so
32:12
Speaker 3: angry and looking back selfish because of course, I'm like,
32:17
Speaker 3: we smell all this money on the hotel, We've missed work,
32:20
Speaker 3: we've done this, Like what is the big deal? And
32:24
Speaker 3: he blessed him, He like he cares so much to explain,
32:30
Speaker 3: like the because I guess in my head I did
32:34
Speaker 3: not connect how extreme of a surgery this was, you know,
32:40
Speaker 3: like it is. It is a life changing, massive surgery
32:45
Speaker 3: on a toddler. And so he sat me down and
32:48
Speaker 3: he's like, hey, this is the problem if we if
32:51
Speaker 3: we go in and we do this surgery and something
32:54
Speaker 3: goes wrong, we we we gauge the success of this
33:01
Speaker 3: surgery by regulating his temperature. If he goes in with
33:04
Speaker 3: a fever, we can't regulate his temperature, and we don't
33:06
Speaker 3: know if he's getting an infection. We can't. We can't,
33:10
Speaker 3: you know, And he was blessed his soul. He's so
33:14
Speaker 3: good at explaining that. So I finally it kind of
33:16
Speaker 3: hit me how massive this surgery was. So I'm like, okay, yep,
33:22
Speaker 3: let's go home and we'll we'll reschedule. So I think
33:26
Speaker 3: we rescheduled for the next month. So we go in
33:31
Speaker 3: and everything looks good, he's ready, he has no fever,
33:37
Speaker 3: they can proceed with the surgery. And then I remember
33:43
Speaker 3: my husband and I because the doctor had asked if
33:47
Speaker 3: one of us wanted to be there when he was
33:50
Speaker 3: put under to hold his hand, and I remember my
33:56
Speaker 3: husband was just a mess about that. So I volunteered
33:59
Speaker 3: to you that, and I mean, I need to I
34:04
Speaker 3: need to backtrack. So so when we're in the hospital,
34:08
Speaker 3: you know, the first time, like even before they're putting
34:11
Speaker 3: him on the helicopter, watching your baby, watching people put
34:18
Speaker 3: ivs into your baby is just it's so much. And
34:22
Speaker 3: I remember four people holding down my twenty six day
34:28
Speaker 3: old baby because he's fighting so hard, and I just
34:32
Speaker 3: I just find that it's just really hard. So we
34:38
Speaker 3: a couple times at the hospital. They actually asked us
34:41
Speaker 3: if they wanted us to take him to another room
34:46
Speaker 3: to put the IV's in so we wouldn't have to
34:49
Speaker 3: watch or leave the room. And I thought that was
34:51
Speaker 3: so nice because it is it's very traumatizing. So my
34:59
Speaker 3: husband and I chose to walk down and hold his hand,
35:06
Speaker 3: which was kind of I loved it and didn't love it. It
35:13
Speaker 3: was it was a nice moment. But then so we
35:17
Speaker 3: go downstairs, he goes out, and they performed the surgery.
35:23
Speaker 3: So during this specific pull through surgery, they removed the
35:30
Speaker 3: part of the intestine that did not work, and they
35:34
Speaker 3: took the remaining small intestine that did work, and they
35:40
Speaker 3: stretched it and there was this there was a specific
35:44
Speaker 3: medical term for that, but I'm I don't know it,
35:48
Speaker 3: and then they reconnected it to his rectum, which they
35:52
Speaker 3: also had to stretch, and they made that sound like
35:59
Speaker 3: this would give him more time to get to the bathroom.
36:03
Speaker 3: Is why they were doing that. So everything went great.
36:09
Speaker 3: Before they went into the surgery, they had asked me
36:13
Speaker 3: and my husband, Hey, we have this opportunity to use robotics.
36:18
Speaker 3: Are you comfortable with that? And we said, yeah, sure,
36:22
Speaker 3: like we'll do anything, you know, anything that will help
36:25
Speaker 3: you guys. And when he gets out of surgery, he
36:30
Speaker 3: point blank is said, if we had not used robotics,
36:34
Speaker 3: this surgery would not have been successful. And so I
36:40
Speaker 3: was grateful for that. I'm very grateful for that. I
36:43
Speaker 3: am so grateful that we live in a time that
36:49
Speaker 3: that's even a thing to have a robotic assistant in surgery.
36:56
Speaker 3: But just just so I understood it. You know, he
36:59
Speaker 3: has such a tiny body and they were able to
37:03
Speaker 3: use these robot hands to keep him open so they
37:07
Speaker 3: could visually see better and do everything better, and I
37:12
Speaker 3: just thought that was so cool. And yeah, so we're
37:18
Speaker 3: grateful for that. We're grateful that we said yes and
37:22
Speaker 3: that everything worked out. And then the hard part came.
37:27
Speaker 3: So we I think we're in the hospital two weeks
37:33
Speaker 3: and then I kept him home from daycare another week
37:38
Speaker 3: after that, I stayed home with him while we kind
37:43
Speaker 3: of figured out our new life. So the bags were gone.
37:48
Speaker 3: So I'm taking care of those incisions because they're they're healing.
37:53
Speaker 3: They had sown them shut, but they still needed to
37:57
Speaker 3: be cared for and then they wanted to make sure
38:03
Speaker 3: that he was pooping and everything was coming out properly
38:07
Speaker 3: before we left the hospital. So he was doing that
38:10
Speaker 3: in the hospital, and essentially, because he has no large
38:18
Speaker 3: and testine, everything pretty much runs right through him. So
38:23
Speaker 3: we had to start him on amodium to slow down
38:28
Speaker 3: his bowels, which he takes three times a day, and
38:32
Speaker 3: then that helps slow things down. So when it was
38:39
Speaker 3: coming right through him, it was basically like an acid,
38:44
Speaker 3: so it would really wreck his skin and it would
38:47
Speaker 3: burn his skin, and we'd had a lot of diaper
38:50
Speaker 3: rash and really horrible, horrible, horrible time with diaper changes.
38:55
Speaker 3: So we had to figure out the right dosage of that.
39:00
Speaker 3: And then about I think it was six months later
39:07
Speaker 3: because I was doing follow ups every month, and then
39:09
Speaker 3: we went down to three months and then every six months.
39:14
Speaker 3: I was telling my care team, I said, it's just
39:18
Speaker 3: really weird. I feel like he is really good, and
39:23
Speaker 3: then he has you know, he's good for two weeks
39:26
Speaker 3: and then he has this week of like diarrhea like
39:29
Speaker 3: episode where he's not sick, but he just he's having
39:35
Speaker 3: a hard time. He's crying about stomach pains. And mind you,
39:39
Speaker 3: he's also a toddler, so he can't really communicate that
39:42
Speaker 3: with me. I can just I hear a lot of
39:45
Speaker 3: gurgling in his gut, and I'm just like, I just
39:49
Speaker 3: think that there's something going on, and she goes, Yep,
39:52
Speaker 3: I know exactly what you're talking about. Bless these this
39:57
Speaker 3: care team, like they have dealt with Hersungs kids a lot.
40:01
Speaker 3: They have a big caseload of them, so they know
40:05
Speaker 3: not every child is the same, of course, but they
40:08
Speaker 3: know enough to be able to tell me this is
40:11
Speaker 3: what's going on. Yep, we know what to do. And
40:14
Speaker 3: so she said, yep, he needs a dose of antibiotics
40:19
Speaker 3: every twenty one days and that will clear his gut up.
40:24
Speaker 3: And she kind of explained it to me where he
40:29
Speaker 3: because the large intestine is what breaks down your food.
40:33
Speaker 3: Because he doesn't have that part, everything's kind of just
40:36
Speaker 3: sitting in his gut and fermenting. So that's what makes
40:40
Speaker 3: him kind of sick and lethargic and bubbly. And so
40:45
Speaker 3: the antibiotics break all that up. And I've learned now
40:50
Speaker 3: after some time that it's mostly due to his diet,
40:54
Speaker 3: so he can't he doesn't process sugar very well. So
40:59
Speaker 3: I tried to keep him sugar free, and I need
41:03
Speaker 3: to push carbs and white rice and constipating foods. He
41:09
Speaker 3: basically eats what's called like the Brat diet. It's like breads, apples, pastas, bananas.
41:19
Speaker 3: So and then he also has dairy allergy, so we
41:25
Speaker 3: didn't They kind of started us off dairy free since
41:30
Speaker 3: the very beginning because dairy and GI stuff don't really
41:33
Speaker 3: get along. But I he kept having these weird reactions
41:38
Speaker 3: to like tiny them off, like it'd be like butter
41:42
Speaker 3: and a recipe, you know. So I had him. I
41:45
Speaker 3: took him to an allergist and it was confirmed he
41:48
Speaker 3: has a dairy allergy to the actual milk protein. So
41:55
Speaker 3: I stopped feeding him dairy and that got a lot better.
42:00
Speaker 3: And so I need to I need to rewind a
42:04
Speaker 3: little bit too, because I'm going from stoma mom, who
42:08
Speaker 3: when you have stomas, you have a very strict food
42:14
Speaker 3: food avoidance list. So he is a baby and I
42:20
Speaker 3: can't give him, you know, anything with seeds or anything
42:24
Speaker 3: that could potentially cause a blockage in his stoma. So
42:27
Speaker 3: he didn't eat a lot of like fresh fruits and veggies,
42:31
Speaker 3: and now he can. So I'm like, I'm transitioning to
42:36
Speaker 3: giving him, you know, fresh fruits and veggies, and he's
42:39
Speaker 3: now a toddler and he's never seen one, so he's
42:42
Speaker 3: naturally like, what is this and doesn't want to eat it.
42:46
Speaker 3: So that is now our biggest struggle is he's three
42:52
Speaker 3: and he has worked you know, a good chunk of
42:55
Speaker 3: his life not eating these particular foods, and now he
42:58
Speaker 3: can eat them, and he's also sorry, he's also used
43:07
Speaker 3: to all of these particular foods, and it's it's hard
43:11
Speaker 3: giving him to expand his horizons. I'll just say, because
43:15
Speaker 3: he's also three, so he's gonna eat what he wants
43:19
Speaker 3: to eat. So yeah, that that is where we are now.
43:27
Speaker 3: He so today he is three. He doesn't have full
43:36
Speaker 3: control of his bowels yet. They they told me that
43:42
Speaker 3: potty training would take some time, so I'm not I'm
43:47
Speaker 3: not concerned with that yet. So he has about, i
43:54
Speaker 3: want to say, fifteen diaper changes a day, and they
44:00
Speaker 3: want us our goal is to get down to less
44:03
Speaker 3: than six. So it's it's constantly managing that diet and
44:09
Speaker 3: keeping up on those medications and increasing the dosages, which
44:16
Speaker 3: by the way, none of that is covered by my insurance.
44:18
Speaker 3: So that's also fun, and then lots of you know,
44:25
Speaker 3: expensive creams and powders for his ziper changes. And yeah,
44:34
Speaker 3: so that that's where we are now. I'm I'm out.
44:41
Speaker 3: I did. I did pull him out from daycare. I
44:43
Speaker 3: should have said that. So right after his surgery, I
44:50
Speaker 3: had spent an extra week home with him, and then
44:55
Speaker 3: when I sent him back to daycare, I had a
44:58
Speaker 3: really hard time because he has that dairy allergy and
45:05
Speaker 3: they didn't really have a lot of options for him.
45:08
Speaker 3: So it was through a school, and so they followed
45:11
Speaker 3: the school calendar for meals, and most of the meals
45:17
Speaker 3: have dairy in them, so his options of having anything
45:22
Speaker 3: was like a ham sandwich. So it just wasn't enough
45:25
Speaker 3: for him. So because of his because of his condition,
45:29
Speaker 3: he has to eat every couple hours or he's starving
45:32
Speaker 3: because everything just runs right through him. So I ham
45:36
Speaker 3: sandwich is not going to get him very far. So
45:40
Speaker 3: and then there was just the schedule of the diaper changes.
45:44
Speaker 3: They usually typically change kids every two hours, and it
45:49
Speaker 3: just wasn't often enough for him. So I just had
45:53
Speaker 3: made I love that daycare. Don't have any problems with
45:56
Speaker 3: that daycare. It just isn't meant for someone with his condition.
46:01
Speaker 3: So I begged and begged my mom to take him back,
46:06
Speaker 3: and now he sees her, so she had. She said,
46:12
Speaker 3: I only want to do three days a week, So
46:15
Speaker 3: I went down to four days a week at my
46:18
Speaker 3: job and then I get some help from my sister
46:22
Speaker 3: or my mother in law on that opposite day, which
46:25
Speaker 3: has been a blessing to our family because he's in
46:29
Speaker 3: the best care now with whoever whoever he's with that day,
46:34
Speaker 3: and it just it it was so much better on
46:38
Speaker 3: my heart and less anxiety for me. So now so
46:45
Speaker 3: now we are just living life with our three year
46:50
Speaker 3: old in this condition. We still do follow ups every
46:53
Speaker 3: six months, but from what my doctors tell me, he'll
47:00
Speaker 3: be taking amodium the rest of his life and he'll
47:06
Speaker 3: probably do the antibiotics until he's at least twenty is
47:10
Speaker 3: what she told me. And now actually we've up to that. Today.
47:15
Speaker 3: He takes them seven days on and then seven days off,
47:21
Speaker 3: so we're now having to keep an eye on his
47:26
Speaker 3: liver enzymes, so we test those because antibots are really
47:30
Speaker 3: harsh for your liver. So that's it's basically my story.
47:39
Speaker 3: But I do want to I do want to talk
47:41
Speaker 3: a little bit about what it's like on my marriage.
47:47
Speaker 2: If you're okay with that, lease feel free.
47:50
Speaker 3: Because I feel like this is a lot of the
47:55
Speaker 3: it's really hard to find people of course, that have
47:58
Speaker 3: been through this, really hard to find anybody with Hirshprung's disease.
48:02
Speaker 3: I the main reason why I've wanted to even do
48:06
Speaker 3: this podcast is so that I can help someone and
48:09
Speaker 3: that they can find find the story and hear and
48:13
Speaker 3: have some faith. And one of those things that I
48:17
Speaker 3: wanted to talk about was my marriage because it it's
48:20
Speaker 3: really really hard on your marriage. I mean, you're both
48:25
Speaker 3: Having a newborn is hard, but because you're you're tired
48:29
Speaker 3: and there's a lot happening. But having a newborn with
48:33
Speaker 3: a disease is much much harder and the care involved.
48:38
Speaker 3: And it's now that I've been through this and I've
48:44
Speaker 3: I've recognized what's going on, and I've I've recognized what's
48:48
Speaker 3: going on with my husband, I can speak on a
48:52
Speaker 3: little bit more on filling your cup and filling your
48:56
Speaker 3: your spouse's cup. There there are a lot of times
49:01
Speaker 3: that you know, say I get up in the night
49:06
Speaker 3: six or seven times to do some diaper changes, and
49:10
Speaker 3: I'm just exhausted. And I feel like it's so easy
49:15
Speaker 3: for people to say marriage is fifty to fifty, and
49:19
Speaker 3: I just it's not. Sometimes you're a tent and sometimes
49:23
Speaker 3: your husband needs to be ninety. It's vice versa. So
49:28
Speaker 3: I the biggest, the biggest piece of advice I can
49:31
Speaker 3: say is just communicate. Communicate with your partner like, Hey,
49:35
Speaker 3: I'm operating on a ten today, I'm gonna need you
49:39
Speaker 3: to step it up or or really I can't. I
49:44
Speaker 3: had a really hard day at work and I'm I'm
49:47
Speaker 3: just exhausted. He works a physically demanding job, so I
49:52
Speaker 3: get that a lot. So and it's recognizing that we
49:57
Speaker 3: are both like very driven, hardworking people. So it takes
50:03
Speaker 3: a lot for us to really communicate that and say like, hey,
50:07
Speaker 3: I can't do this because we're we're yes people. But
50:10
Speaker 3: so just owning that and recognizing, like hey, I need
50:15
Speaker 3: to actually step outside and go for a walk. Because
50:21
Speaker 3: there was in the aftermath of his second surgery, there
50:27
Speaker 3: was a lot of crying and a lot of screaming
50:32
Speaker 3: just because he couldn't communicate the pain my son was having.
50:37
Speaker 3: So it and it wears on you emotionally, it wears
50:40
Speaker 3: on you mentally and it just gets to be a lot.
50:45
Speaker 3: So it's knowing, it's knowing when you're reaching that level
50:50
Speaker 3: and being able to recognize it and communicate what you
50:56
Speaker 3: need from your partner, like, Hey, I need you to
50:58
Speaker 3: do bath night, I hate, I need you to make suffer.
51:03
Speaker 3: I need actually I need a weekend away. You know,
51:05
Speaker 3: I just need. You just need to recognize what you
51:08
Speaker 3: need and recognize what they need. So I just I
51:13
Speaker 3: just wanted to share that because it's it's really important
51:17
Speaker 3: because I think just a lot of marriage advice, especially
51:23
Speaker 3: like in church and Christian households, like we're kind of taught,
51:28
Speaker 3: you know, put your marriage first. Kids come second, and
51:31
Speaker 3: that's not always easy to do, especially with a child
51:36
Speaker 3: with high needs. So it's taking my time planning those
51:43
Speaker 3: date nights, being intentional. Yeah, it's just working extra to
51:52
Speaker 3: keep your marriage in check. Also, I mean, because you
51:55
Speaker 3: have a lot going on, and it's it's affecting your
51:59
Speaker 3: part as much as it's affecting you. I think as moms,
52:03
Speaker 3: it's real easy to be poor me, perme, this is
52:06
Speaker 3: all happening to me, but it's also happening to your husband,
52:10
Speaker 3: So to just give him that Karen love as well
52:15
Speaker 3: through it.
52:18
Speaker 2: Yeah, most definitely, And I think that that's an excellent
52:22
Speaker 2: You put that brilliantly as well. I mean, because it's
52:26
Speaker 2: it's it's the whole, the whole package, isn't it. It's
52:29
Speaker 2: because sometimes people think, right, well, it's just you know,
52:33
Speaker 2: the child going through this particular thing, and they are
52:36
Speaker 2: and they are going through obviously an awful lot that
52:39
Speaker 2: as you say, most of the time when we have surgery,
52:43
Speaker 2: as Hirschbrung's children, it's very early and we can't communicate,
52:46
Speaker 2: and we are going through a lot. But it's it's everything.
52:50
Speaker 2: It's brothers and sisters and parents and grandparents and aunties
52:55
Speaker 2: and uncles, et cetera. The whole sort of the whole
52:59
Speaker 2: side of that, the whole community I think is sort
53:02
Speaker 2: of affected in some way as well. Yeah, but it's yeah,
53:09
Speaker 2: that's all. It's a lot. But no, I think thank
53:14
Speaker 2: you again for sharing. I mean, what a rollercoaster of
53:18
Speaker 2: a ride. And I know you've just touched on a
53:22
Speaker 2: little bit there as well about sort of what's happening now,
53:28
Speaker 2: and I guess just sort of finally I'll ask sort
53:32
Speaker 2: of what are the hopes for the future.
53:36
Speaker 3: Yeah, so my hope is that you know, my my
53:40
Speaker 3: next fear is school. So I'm I'm worried about school.
53:46
Speaker 3: I'm worried about how that will look for him. Specifically
53:52
Speaker 3: here I didn't mention, but we have had several hospital
53:57
Speaker 3: stays because he's had enter and colitis and that's a
54:02
Speaker 3: very common infection for kiddos with Hirshbrung's disease. And I
54:09
Speaker 3: mean I recently, in February, I took him to the
54:14
Speaker 3: Children's Museum just for a day of fun, and he
54:18
Speaker 3: has no immune system whatsoever, so he actually got to
54:22
Speaker 3: very sick, and my daughter got sick as well, and
54:27
Speaker 3: she was over it the next day, but he had
54:30
Speaker 3: to go to the hospital and we were there for
54:33
Speaker 3: eight days because he it just takes everything out of him.
54:37
Speaker 3: So he actually he gets dehydrated very quickly because your
54:43
Speaker 3: colon is what holds water, right, so he needs to
54:48
Speaker 3: constantly stay hydrated. So it's just it's a lot to
54:53
Speaker 3: stay on top of. So I my biggest fear is
54:57
Speaker 3: school and what that will look like and what that
55:00
Speaker 3: support could look like. Part of me wants to homeschool
55:06
Speaker 3: just because I'm so terrified and I don't know what
55:10
Speaker 3: that will look like. And it's just I try not
55:13
Speaker 3: to get too far ahead into the future because it
55:16
Speaker 3: just makes me spiral. So but I mean, knowing you,
55:22
Speaker 3: I mean you are in your thirties and you're thriving,
55:27
Speaker 3: I would say, right, so it gives me hope. I mean,
55:31
Speaker 3: you don't have total colonic, so I don't know if
55:35
Speaker 3: it's the same. But every like I said, every child
55:38
Speaker 3: is different. And once in a while I do find
55:44
Speaker 3: adults in the Facebook groups that give me some hope.
55:50
Speaker 3: But it is a lot of unknown.
55:52
Speaker 2: So yeah, you're right, but if you know, if I
55:58
Speaker 2: could give one bit of comfort from them, I do,
56:01
Speaker 2: and have interviewed quite a few people adults with total
56:05
Speaker 2: colonic who you know are doing well, are holding down
56:10
Speaker 2: quote unquote normal jobs, you know, are if you were
56:15
Speaker 2: to look at them, same with a lot of people
56:18
Speaker 2: with hirsprungs, you wouldn't know any different. You know, some
56:21
Speaker 2: have stomas, some don't, you know. And and again that
56:25
Speaker 2: having a stoner as well. There's so many people who
56:29
Speaker 2: achieve so many things and again live a very normal,
56:34
Speaker 2: happy life with stonemas you know, and hold down normal jobs.
56:40
Speaker 2: It's just a slightly different, you know, there's a little
56:43
Speaker 2: bit of a different lifestyle, but they're still able to
56:47
Speaker 2: do and in a lot of cases, a lot of
56:50
Speaker 2: people that met they have the STONMA so that they
56:53
Speaker 2: are able to do the things they want to do.
56:56
Speaker 2: If they didn't have their STONA, they wouldn't be able to.
56:59
Speaker 2: So it's a it's a huge positive for a lot
57:02
Speaker 2: of people. So I think again, kind of why I
57:06
Speaker 2: do this is just a kind of showcase because it's
57:09
Speaker 2: very difficult when you're trying to trawl through Facebook and
57:12
Speaker 2: try and find stuff or Instagram or whatever, and sometimes
57:17
Speaker 2: it's a lot easier to have someone tell their story
57:19
Speaker 2: or be able to show their story and say hey,
57:21
Speaker 2: look I'm doing this or that or whatever and I've
57:24
Speaker 2: achieved this, that and the other, rather than trying to
57:29
Speaker 2: go out and sort of find everything yourself via sort
57:33
Speaker 2: of posts and whatnot. But yeah, I mean that there
57:37
Speaker 2: are there are so many people who live unbelievably extraordinary lives,
57:42
Speaker 2: you know, and do fantastic things. So yeah, I mean
57:47
Speaker 2: and and obviously wish the absolute best for your son,
57:52
Speaker 2: and thank you so much for coming on. It's been
57:56
Speaker 2: it's been a long journey that it will always the
58:00
Speaker 2: world with Helicopter rides, et cetera. I just want to
58:04
Speaker 2: say thank you so so much for coming on. An
58:07
Speaker 2: absolute pleasure to have you on.
58:11
Speaker 3: Yeah, thank you for having me. I'm like I said,
58:14
Speaker 3: I'm I was kind of so we actually my husband
58:21
Speaker 3: and I have never Our close family knows, of course
58:25
Speaker 3: about his condition, but I've never publicly shared it just
58:29
Speaker 3: because I'm I just have mixed feelings about it, kind
58:33
Speaker 3: of just where I don't want, you know, sympathy for me,
58:37
Speaker 3: or you know, I don't I don't want. I never
58:41
Speaker 3: wanted him to be treated differently or us treated differently.
58:46
Speaker 3: And now that he's three and I'm kind of walking
58:51
Speaker 3: through what I went through, I'm recognizing like he is
58:55
Speaker 3: different and that's okay. He is different, absolutely, And if
59:01
Speaker 3: I can just connect and build that community with other
59:06
Speaker 3: moms who get it, because my friends are great and
59:10
Speaker 3: my family is great, but unless you've actually went through
59:13
Speaker 3: what I've went through, like, you can't relate. I think
59:19
Speaker 3: everyone wants to try and be supportive, but I want
59:24
Speaker 3: to build that that community of moms where I could
59:28
Speaker 3: just they know, they know.
59:32
Speaker 2: What I went through so exactly exactly. But no, thank
59:36
Speaker 2: you so much, because I think you've told you told
59:38
Speaker 2: his story absolutely brilliantly. But no, thank you so so
59:42
Speaker 2: much for coming on and I wish you, you know, all,
59:47
Speaker 2: all the very best for the future. Thank you, yeah,
59:51
Speaker 2: thank you so much.
59:56
Speaker 1: Thank you for listening and being part of this growing community.
59:59
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
1:00:02
Speaker 1: leave a review, and share it with someone who might
1:00:04
Speaker 1: need it. You can connect with us on social media
1:00:07
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
1:00:13
Speaker 1: See you next week.