Latest / Tom's Hirschsprung's Podcast / Episode 72 - With Rebecca Wichert

Transcript

Episode 72 - With Rebecca Wichert · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshbrun's podcast, where our provide
0:08
Speaker 1: a look into the remarkable experiences of the most inspiring
0:11
Speaker 1: people around Hirshprung's disease and sports.
0:38
Speaker 2: Hello and welcome to episode seventy two of Tom's Hirshprungs podcast.
0:44
Speaker 2: I am delighted to Rebecca. Welcome Rebecca which Art to
0:47
Speaker 2: the podcast. Welcome Rebecca, Hello, thank you for having me.
0:51
Speaker 2: You are all the way from America and delighted to
0:55
Speaker 2: have you on. We are going to talk about your
1:00
Speaker 2: daughter Valerie and her long segment hirsh Bruns. We've obviously
1:06
Speaker 2: told a little bit before beforehand, and really really interested
1:11
Speaker 2: to hear a lot of different parts of this story.
1:14
Speaker 2: There's a lot of medical terms that I hadn't heard
1:16
Speaker 2: of before. Some people may have done things like mlbs,
1:21
Speaker 2: and we'll go through mlbs and what mlbs are. And
1:23
Speaker 2: it's not Major League Baseball like I thought it was
1:25
Speaker 2: at the start, but yes, we'll go through lots of
1:29
Speaker 2: different medical terms. And obviously Valerie's story. Would you like
1:35
Speaker 2: to kind of take us from the very beginning.
1:39
Speaker 3: Yes, So, Valerie, we had a healthy pregnancy, everything was
1:45
Speaker 3: going good, and we even got genetic testing done and
1:50
Speaker 3: all of that came back normal. So it was interesting
1:55
Speaker 3: when she was born because we had no idea, you know,
2:00
Speaker 3: what was going on. But yeah, she she was five
2:04
Speaker 3: weeks early though, which you know, was a little scary,
2:09
Speaker 3: but you know, they said, don't worry about it. Five
2:11
Speaker 3: weeks you know, she should be coming out healthy. But yeah,
2:16
Speaker 3: you know, the the labor was really really long, and
2:19
Speaker 3: she actually got stuck, so that was very scary. So
2:25
Speaker 3: they finally utter out. And the weird thing is she
2:29
Speaker 3: didn't cry at all, like she can make a sound,
2:32
Speaker 3: but her high super wide open. So I was like,
2:34
Speaker 3: oh my gosh, that's everything all right, So like, yeah, yeah,
2:37
Speaker 3: she's she's fine. Some babies don't cry, and I was like, okay,
2:43
Speaker 3: so yeah, my late husband and I got sent to
2:46
Speaker 3: the hospital ring to wait for Valerie while they did
2:50
Speaker 3: all the checkups and made sure she was good to go.
2:54
Speaker 3: And then it was about two hours later they came
2:57
Speaker 3: in and we hadn't seen Valerie yet and they said
2:59
Speaker 3: that they had bad news. She was fomiting bile and
3:05
Speaker 3: they tried to feed her and she would immediately vomit.
3:11
Speaker 3: So they're like, oh my gosh, what does that mean?
3:16
Speaker 3: So what they had to do was say, hey, we're
3:17
Speaker 3: going to send her to Children's Nebraska here and they
3:24
Speaker 3: were like, we're taking her right away. And then they
3:26
Speaker 3: passed the hospital door and there she was. They said,
3:28
Speaker 3: you can, you can say bye if you want. I'm
3:31
Speaker 3: like absolutely, I'm sitting there just having a baby a
3:33
Speaker 3: few hours ago, and they're taking her away to a
3:36
Speaker 3: different hospital. Luckily, the Children's hospital was only about twenty
3:42
Speaker 3: minutes away fifteen. So the nurses checked me out and
3:48
Speaker 3: they're like, hey, I know you want to be with
3:50
Speaker 3: your baby, so you can leave. I was like, are
3:54
Speaker 3: you sure? Like holy moly, like they just let me.
3:57
Speaker 3: I just had a baby. And then they let me leave.
4:00
Speaker 3: So I'm like, oh my gosh. I've like, I'm tired,
4:03
Speaker 3: my feet are swollen. I'm like, what's going on? But yeah,
4:08
Speaker 3: they discharged us, which I was thankful for because obviously
4:11
Speaker 3: I didn't want to just sit there worrying about what
4:13
Speaker 3: was going on. And then yeah we got there. They
4:19
Speaker 3: said they were immediately taking her in for surgery to
4:23
Speaker 3: see what was going on if there was an obstruction
4:26
Speaker 3: or you know, just something that didn't seem right. They
4:31
Speaker 3: wanted to just check everything out. So, yeah, we're there.
4:37
Speaker 3: I'm tired. I had to be pushed around in a
4:39
Speaker 3: wheelchair because I couldn't even block. I think that just
4:43
Speaker 3: had to do with the swollen feet though, But yeah,
4:49
Speaker 3: so we're just waiting and waiting and they take while
4:55
Speaker 3: they're in there, they're going through and taken biapses just
5:00
Speaker 3: some case. They bring her back and at this point
5:05
Speaker 3: she didn't have anything, and she was in like a
5:08
Speaker 3: room with a blue light and we couldn't touch her,
5:10
Speaker 3: we couldn't do anything. We go in Excuse me, my
5:17
Speaker 3: voice can cracky, but yeah, so she just kept throwing up,
5:23
Speaker 3: and she kept throwing up. You're like, we really just
5:25
Speaker 3: have to wait and like see if she passes mconium.
5:29
Speaker 3: And if she passes mconium, then we're good. I'm like okay.
5:34
Speaker 3: So they immediately put in a pickline in her hands
5:38
Speaker 3: because she wouldn't keep anything down, so they had to
5:40
Speaker 3: get her on the TPN all the fluid. So that
5:44
Speaker 3: was really terrifying, seeing a little baby with the pickline
5:47
Speaker 3: and I'm like, not eating. So then I'm checking her
5:52
Speaker 3: diaper constantly. Were there for a couple of days and
5:56
Speaker 3: no updates, and it seems to looks like mconium in
6:01
Speaker 3: her diapers. Are like, oh my gosh, something's in there.
6:05
Speaker 3: So it's like, okay, okay, well this is a good sign.
6:08
Speaker 3: So then they try to keep trying to mouth feeder.
6:10
Speaker 3: They put the ENNG tube in her nose and try
6:12
Speaker 3: to do that, but nothing will stay nothing, you know,
6:17
Speaker 3: nothing will hold down. She's just vomiting. And that's scary
6:21
Speaker 3: because you know, you're just feeding her and it's going
6:25
Speaker 3: in and then just immediately coming out. So I'm like,
6:28
Speaker 3: she's not getting everything she needs. But yeah, after that,
6:35
Speaker 3: they decided to go back in. They're like, okay, we're
6:42
Speaker 3: gonna take peak because some of the samples came back
6:46
Speaker 3: with no ganglion cells, but they didn't know how far up,
6:50
Speaker 3: so they only took a few just in the ractum,
6:53
Speaker 3: just like a right in the just beginning. They said,
6:56
Speaker 3: we didn't find anything in there, so we're going to
6:58
Speaker 3: go to another surgery and take samples throughout the whole small,
7:03
Speaker 3: large intestine and the stomach. So they did that, and
7:09
Speaker 3: while they were in there, they placed a G two
7:14
Speaker 3: just to get things moving through so that she wasn't
7:18
Speaker 3: vomiting all the time. And at this point, we're like,
7:25
Speaker 3: we don't even know what's going on, like like what
7:29
Speaker 3: condition could this be? Like at first it thought maybe
7:32
Speaker 3: it was cat and they like a few different things
7:39
Speaker 3: that I had never even heard of, and I can't
7:40
Speaker 3: really remember the names that they had said from the beginning,
7:43
Speaker 3: but all of them didn't seem as bad. And then
7:47
Speaker 3: Hirschbrums was at the end, and I'm like, oh my gosh,
7:51
Speaker 3: that's the one. I really hope she dones it half
7:54
Speaker 3: because you know, I immediately just start researching all about it,
8:00
Speaker 3: and then it's just like, okay, well then she could
8:01
Speaker 3: have a stoma, and then she could have you know,
8:04
Speaker 3: I'm thinking, Okay, a stoma is fine, but I'm reading
8:10
Speaker 3: all these other things like okay, well, you know they
8:14
Speaker 3: some of it couldn't work at all. And if that's
8:16
Speaker 3: the case, there they can't eat and tp it like
8:19
Speaker 3: they could be on TPN, but he messes with your liver.
8:21
Speaker 3: So we're just like freaking out and helping it. And
8:25
Speaker 3: then while we're waiting, they actually need the genetic testing
8:29
Speaker 3: on us to like start moving through to be like, hey,
8:33
Speaker 3: let's see if there's any gene in there that can
8:39
Speaker 3: identify like what is going on, but those results took
8:44
Speaker 3: forever to come back, so we're just still, you know,
8:48
Speaker 3: waiting and waiting. So then we get the samples back
8:55
Speaker 3: from what she took when she was in there getting surgery,
8:59
Speaker 3: and oh, my gosh, I can still remember she was.
9:04
Speaker 3: They had this time, they had this thing where they
9:06
Speaker 3: could like do it immediately, like they got the samples
9:10
Speaker 3: and then they put it on something and take it
9:12
Speaker 3: back and they can look to see if it's moving
9:14
Speaker 3: or not, or if there's any celts there. So it
9:16
Speaker 3: was really quick this time. So she was still in
9:19
Speaker 3: surgery and we were in the waiting area still at
9:23
Speaker 3: the hospital. We've been there every day. I was on
9:28
Speaker 3: maternity leave, so I didn't leave the hospital. I was
9:31
Speaker 3: there twenty four hours a day, just sleeping in a chair,
9:36
Speaker 3: waiting to find out if everything's all right. And then yeah,
9:42
Speaker 3: so the surgery is happening. The surgeon comes out and
9:46
Speaker 3: is crying, and I'm like, oh no, did something happen
9:52
Speaker 3: in there, Like I'm freaking out, And she just walks
9:55
Speaker 3: up and is like, I'm so sorry, but she has
10:01
Speaker 3: nothing in there, maybe about five centimeters And they're sorry
10:06
Speaker 3: if I pronounced this wrong. In her duodenum and it's
10:09
Speaker 3: just scattered, just just barely in there and then into
10:15
Speaker 3: her tummy, and she was just like, I'm so sorry.
10:22
Speaker 3: This is gonna be a really really long road and
10:26
Speaker 3: I don't want us to tell you, but she's in
10:29
Speaker 3: recovery now and we'll we'll bring her up when she's
10:33
Speaker 3: ton She did, cause certainly went really well checking everything.
10:37
Speaker 3: You know, you're always scared a little baby has to
10:39
Speaker 3: go under anesthesia and then you know you so yeah,
10:43
Speaker 3: she comes and tells us all that stuff. So now
10:45
Speaker 3: we're just like, our world is completely different. We're like,
10:51
Speaker 3: what is going what is going on? And we still
10:53
Speaker 3: just didn't I mean no, it was our first baby, like,
10:59
Speaker 3: so yeah, we it. We go back up to the room,
11:02
Speaker 3: wait for Valerie, and then nurses the doctors confirm that
11:06
Speaker 3: it's Hirshbrum's. So we're like, oh, the one we didn't that.
11:09
Speaker 3: We were like, oh my gosh. That one. They're like,
11:12
Speaker 3: and it's actually one of the most severe kinds, and
11:19
Speaker 3: we're like, oh my gosh, so what does that mean.
11:21
Speaker 3: They're like, she will most likely never even be able
11:25
Speaker 3: to absorb nutrients at all because of the lack of
11:27
Speaker 3: thinguing cells, so she will be on TPN for life.
11:32
Speaker 3: We're like, oh my gosh, and then we start freaking
11:33
Speaker 3: out about that because you know, TPN chemists with your
11:36
Speaker 3: liver and then if you need a transplant, and you
11:39
Speaker 3: have to get the liver and the intestinal transplant, and
11:42
Speaker 3: then everything we were reading was just like intestinal transplants
11:47
Speaker 3: are very rare and very hard to do. So we're like,
11:52
Speaker 3: oh my gosh, Like everything was just all this info
11:55
Speaker 3: at once, and it was a lot to handle. But
12:01
Speaker 3: I wasn't I wasn't going to leave her side at all.
12:06
Speaker 3: But yeah, she just read from my notes.
12:16
Speaker 2: That must have been obviously a huge, a huge shock
12:21
Speaker 2: because you could kind of go, right, okay, the you say,
12:25
Speaker 2: the worst case scenario being Hirshprung's or it could have
12:29
Speaker 2: been obviously lots of other things. And then doing the
12:33
Speaker 2: research as well, and research, I know we would. We
12:36
Speaker 2: were talking a little bit as well off air about
12:38
Speaker 2: research is great in a lot of ways and trying
12:43
Speaker 2: to find things out and other people's experiences, but it
12:47
Speaker 2: also can scare you silly as well. That's the sort
12:51
Speaker 2: of the other end of research. And I guess to
12:54
Speaker 2: start with, you were probably at the latter.
12:58
Speaker 3: Yeah, yeah, we uh yeah, it I know. And then
13:05
Speaker 3: I mean literally anything you do anything, it's just like
13:07
Speaker 3: ohsh you know, yeah yeah. So it was. It was terrifying,
13:16
Speaker 3: and and some of the and I'm like recalling now
13:18
Speaker 3: some of the other ones to day were saying that,
13:20
Speaker 3: I mean she has crones or like stuff like that.
13:23
Speaker 3: So they were like, okay, because we did have some
13:25
Speaker 3: of that ran that ran in the family. And then
13:30
Speaker 3: so basically after we find this out, we get the
13:34
Speaker 3: genetic testing done from my late husband and I and
13:37
Speaker 3: we don't have the gene neither of us do. So
13:42
Speaker 3: we were like it was it was just a weird
13:46
Speaker 3: thing that happened at conception that was incredibly rare and
13:50
Speaker 3: doesn't run in the family. So we were all like like, okay,
13:56
Speaker 3: so how does this happen because everything you read out
13:58
Speaker 3: it is genetics. We were both like, oka, or one
14:00
Speaker 3: of us must have it, or one of us in
14:01
Speaker 3: the family. And I'm like, well, my family has a
14:03
Speaker 3: lot of you know, intestinal problems like Cron's ibs stuff
14:07
Speaker 3: like that, and Nates didn't have really any so you know,
14:13
Speaker 3: I was thinking it was me the whole time, but
14:14
Speaker 3: it was neither of us. So that was that through
14:17
Speaker 3: another thing in there, like, oh my gosh, this thing
14:19
Speaker 3: we've never heard about, we don't have and she just
14:22
Speaker 3: randomly has. So it was shocking to us too.
14:29
Speaker 2: Absolutely. I mean it's again from the people I've spoken to,
14:34
Speaker 2: there are some people where it has run from sort
14:38
Speaker 2: of grandparent to parent to child, and there are some
14:43
Speaker 2: people that have absolutely no no genetics of hirsch Brom's whatsoever,
14:52
Speaker 2: or no family history whatsoever, and they're the only ones
14:55
Speaker 2: that have it. The children don't have it, their parents
14:58
Speaker 2: don't have it. In my case, I'm the only one
15:03
Speaker 2: in my family. I have three brothers, they all don't
15:05
Speaker 2: have it. My parents never had it. Nobody ever in
15:08
Speaker 2: my family has ever had it apart from me. So
15:11
Speaker 2: in terms of people always ask the question, oh is
15:14
Speaker 2: it genetic? And the genuine answer this came from a
15:20
Speaker 2: doctor I spoke to a couple of months ago at
15:25
Speaker 2: Hirshprung's conference, and he said, we simply just don't know.
15:28
Speaker 2: And I think that's probably the best way to put
15:30
Speaker 2: it at the moment, because in my experience of talking
15:34
Speaker 2: to people, I can't make any sort of heads and
15:38
Speaker 2: tail of it because there are so many different examples
15:42
Speaker 2: where it has happened here and it hasn't happened here,
15:45
Speaker 2: and I just think, yeah, I just think this needs
15:49
Speaker 2: to be more testing done. And whether we'll ever have
15:54
Speaker 2: an answer, I have no idea, but I think that's probably, yeah,
15:58
Speaker 2: probably the safest way to go.
16:01
Speaker 3: Yeah, oh Matt. One day we will though have an
16:04
Speaker 3: answer to it. And it was for me too. I
16:08
Speaker 3: was one of those people who when I got pregnant,
16:10
Speaker 3: I was just like, I can eat fully healthy, I
16:13
Speaker 3: not can eat processed meat, you know. I was like,
16:18
Speaker 3: I want to make sure everything is perfect. So it
16:21
Speaker 3: was just weird that, you know, that this happened after
16:25
Speaker 3: I was like so careful about everything I did. I
16:29
Speaker 3: wouldn't even eat like raw cheese, like or like cheesecake
16:33
Speaker 3: because I was like terrifying the like the eggs that
16:36
Speaker 3: were in there. Would you know me, would it gives
16:40
Speaker 3: me like get me sick? You know what? So it
16:43
Speaker 3: was I was really careful about everything too, So it's
16:45
Speaker 3: just weird that it just showed up randomly out of
16:49
Speaker 3: where it. It would be wonderful in the future if
16:51
Speaker 3: we can pinpoint that down and figure out like where
16:54
Speaker 3: did this, where did this come?
16:57
Speaker 2: Hopefully, hopefully. I mean there's there's lots of research being
17:00
Speaker 2: done through you know, places like Reach and what have you,
17:04
Speaker 2: and are they there's lots of written Older Hay in
17:08
Speaker 2: Liverpool are doing lots of research as well, and hopefully
17:11
Speaker 2: one day we will we will find out. But that
17:13
Speaker 2: that's another thing. You raise an interesting point there when
17:15
Speaker 2: people talk about, oh, was it something I ate during
17:18
Speaker 2: my pregnancy? Was it something I did during my pregnancy?
17:20
Speaker 2: And again all of the doctors and nurses I've ever
17:23
Speaker 2: spoken to have gone, no, it is it is absolutely
17:29
Speaker 2: not your fault in any way, shape or form. You know,
17:33
Speaker 2: it's it's never something you ate or you accidentally ate
17:36
Speaker 2: chocolate one day. No, it isn't that. So it's it is.
17:41
Speaker 2: It is just it's just rotten luck unfortunately. And I
17:47
Speaker 2: know there's that sort of Yeah, it is a in
17:52
Speaker 2: a lot of cases. There are other cases as well,
17:55
Speaker 2: but yeah, it is just yeah, a lot of cases
17:58
Speaker 2: it is just is the luck of the drawer unfortunately.
18:03
Speaker 3: Yeah, we got the best left though, right.
18:06
Speaker 2: Yeah, absolutely absolutely.
18:10
Speaker 3: So, Yeah, where was I at here? We were talking
18:16
Speaker 3: about all the genetics stuff. So after that, once we
18:22
Speaker 3: found everything out, they said that we need to go
18:26
Speaker 3: in and create a stuma, and they said they want
18:33
Speaker 3: to keep the non working intests though, so they were
18:37
Speaker 3: going to do a double so they were going to
18:39
Speaker 3: come out and do a mucus fistula so that we
18:42
Speaker 3: could irrigate it every day and potentially save it. So
18:48
Speaker 3: she had to go in for another surgery after all
18:53
Speaker 3: of this, and then in between these, so she had
18:57
Speaker 3: her initial surgery, and her initial one caused her throat
19:02
Speaker 3: to close and it from scar tissue. I believe that
19:08
Speaker 3: the too that they used was too big, which they
19:13
Speaker 3: had said that they used the smallest one, but I
19:17
Speaker 3: don't know. It was kind of weird there. And so
19:22
Speaker 3: she comes out and then she she's like not breathing
19:24
Speaker 3: very well, and she's having late so that she's like
19:26
Speaker 3: her breathing is late, weird, and she like her oxygen
19:32
Speaker 3: level went down to like sixty and it was just
19:35
Speaker 3: really really scary. So they're giving her these breathing treatments
19:38
Speaker 3: and they get the professional into look and said that
19:43
Speaker 3: her throat was the size of a coffee straw, so
19:46
Speaker 3: like ten teeny teeny, and they had to go in
19:51
Speaker 3: and they call it an MLB. That's the one we
19:55
Speaker 3: were talking about. Not Major League baseballful, No, it does
19:59
Speaker 3: have a tough it does. It's hard to pronounce, so
20:02
Speaker 3: I'm not sure if I'm saying it correctly, but it's
20:08
Speaker 3: called micro laryn goscipie and bron koscopy. So what they
20:15
Speaker 3: do is they go in and they they kind of
20:17
Speaker 3: shave off this car tissue. The problem with that is
20:23
Speaker 3: if they do that, it wants to grow back. So
20:28
Speaker 3: it kept growing back, and she kept having to get
20:32
Speaker 3: those MLB's done before like the major surgery, because if
20:36
Speaker 3: she couldn't breathe, you know, we had to get that
20:39
Speaker 3: taken care first. So that was really scary. So yeah,
20:44
Speaker 3: she had a total seven of those, which our doctor
20:48
Speaker 3: told us he said that it was It was actually
20:50
Speaker 3: really funny. He was sut. The surgeon was amazing. He
20:54
Speaker 3: he said that that's the most MLBST he's ever had
20:58
Speaker 3: to do in his career on a single person. So
21:01
Speaker 3: he said that next time he buys his next car,
21:04
Speaker 3: he's going to name it Valerie. And I was like,
21:06
Speaker 3: oh my gosh, wow, so yeah, it so that was
21:11
Speaker 3: a whole new thing. I didn't even know what that
21:13
Speaker 3: was either, Like I didn't even know that could happen.
21:15
Speaker 3: With your throat. So she just like just sitting here
21:19
Speaker 3: with her throat closing and you know, her test it's
21:23
Speaker 3: not working. We're like, okay, now that's happening. We again
21:26
Speaker 3: the extra surgeries that have nothing to do with hers bruns.
21:29
Speaker 3: So it was just really scary. Yeah, but she she
21:35
Speaker 3: put through with that though she's in great. She hasn't
21:37
Speaker 3: had one an MLB in a few years, so it's
21:40
Speaker 3: it's been good.
21:42
Speaker 2: No, that's fantastic. That's that's really really good to hear.
21:45
Speaker 2: There's another point that you made about genetic testing. Yeah,
21:50
Speaker 2: getting because she said when you were pregnant, you got
21:54
Speaker 2: genetic testing.
21:55
Speaker 3: Yes.
21:57
Speaker 2: Was there a specific reason for that, because I know
22:01
Speaker 2: you said you didn't have any history of hirshprungs or whatever.
22:04
Speaker 3: No, Okay, this sounds bad, but I honestly wanted it
22:07
Speaker 3: done because when you get genetic testing done, it also
22:10
Speaker 3: lets you know what the gender is early don't know legit.
22:18
Speaker 2: I didn't know that at all, Okay, No, I just
22:20
Speaker 2: thought that. But that was very interesting because I see
22:22
Speaker 2: a lot of people who a few people of it's
22:26
Speaker 2: few do who have hirshprungs, and then they have hirshprungs
22:31
Speaker 2: and then they fell pregnant and they think, oh, I'll
22:35
Speaker 2: get genetic testing because then I'll know if my child's
22:38
Speaker 2: came to have hirshprungs. But obviously if you're having no
22:40
Speaker 2: family history whatsoever of hirshbrugs. Yeah, no, I thought that
22:45
Speaker 2: was but I didn't realize that you can then find
22:47
Speaker 2: out the gender of your baby early.
22:50
Speaker 3: Huh. Yeah, it's it's a I think it's a fairly
22:52
Speaker 3: newish thing, like within the last couple of years. But yeah,
22:55
Speaker 3: I don't know if they offer that in the UK,
22:57
Speaker 3: but they do it in America. So I was immediately like, yes,
23:01
Speaker 3: I really I would love all of that done because
23:02
Speaker 3: I want to know what the gender is before you
23:04
Speaker 3: can even see you know what I mean. So yeah,
23:07
Speaker 3: it was exciting getting everything back. Everything was good, nothing
23:10
Speaker 3: wrong with the genetics, diede and then we were having
23:12
Speaker 3: a little girl.
23:13
Speaker 2: Oh that's fantastic. No, I had I had absolutely, I
23:19
Speaker 2: had no idea about that at all. I wonder if
23:23
Speaker 2: anybody else listening does, but where there it's just me.
23:27
Speaker 2: But yes, so several so seven mlbs and three intestinal
23:36
Speaker 2: surgeries valories also, and I remember saying that she's had
23:40
Speaker 2: six central line placements as well. Would you like to
23:45
Speaker 2: talk a little bit more about those.
23:47
Speaker 3: Yeah, So she got her initial line after they realized
23:53
Speaker 3: her intestines didn't work at all. So she has the
23:55
Speaker 3: buchus fictila, the stoma and chi too, and then the line.
24:00
Speaker 3: Initially they had it up in her neck and that
24:05
Speaker 3: was not good, not a good place for her. She
24:07
Speaker 3: would pick at it, try to get at it. So
24:12
Speaker 3: they're like, okay, we can't send this baby home with
24:16
Speaker 3: the line right there. So, you know, after after the
24:24
Speaker 3: initial couple surgeries, they because she had the pickline for
24:28
Speaker 3: quite a while just but that kept coming out and
24:33
Speaker 3: coming loose and just leaking and and whatnot. So yeah,
24:39
Speaker 3: we did that the initial one, and then before she
24:41
Speaker 3: went home, they placed a different one, a little o're
24:43
Speaker 3: down on her chest. It's a little easier to deal with.
24:47
Speaker 3: And I researched like bests to get for her to
24:52
Speaker 3: bring home and all that, and they actually gave us
24:56
Speaker 3: a little best to come home with, which was nice,
24:59
Speaker 3: but you know, lots of wash and lots of lots
25:02
Speaker 3: of that, So I had to get more and I
25:04
Speaker 3: found some some nice ones on Etsy and stuff like that.
25:08
Speaker 3: But yeah, so she had two of the surgeries, and
25:12
Speaker 3: from the beginning with the line and then after that
25:18
Speaker 3: we so that she gets a several more like later
25:24
Speaker 3: on in life as well, but those were the two
25:27
Speaker 3: main ones from when she was a baby.
25:31
Speaker 2: Right, fantastic, Yes, No, it's yeah, I still love that
25:35
Speaker 2: was She's had several procedures as well in her very true.
25:42
Speaker 3: She's so strong. She's such a strong little girl. She
25:45
Speaker 3: and she's a little spicy too, so she's she fights
25:49
Speaker 3: through it. I've always got.
25:52
Speaker 2: With children with with hashprungs that many of them to
25:59
Speaker 2: end up have then your really high pain thresholds and
26:02
Speaker 2: end up just being really really tough people. I guess
26:06
Speaker 2: you found that with Valerie as well.
26:08
Speaker 3: Yeah. I actually I found out something just recently that's
26:13
Speaker 3: super interesting about like gut problems in hirshrungs in general
26:20
Speaker 3: and serotonin in your brain. So yeah, I think that
26:25
Speaker 3: there's a connection. So if like with Valerie, she has
26:30
Speaker 3: barely anything working, so she's not getting the serotonin like
26:35
Speaker 3: because they work together, they go hand in hand, So
26:37
Speaker 3: if you don't have that, so that might be why
26:40
Speaker 3: she's a little spicy, because the serotonin there is lacking.
26:45
Speaker 3: I just talked with the psychologist who was like, we
26:51
Speaker 3: talked about val and she said, yeah, they're connected. She's like,
26:55
Speaker 3: have you ever wondered why people with IBS are in
26:57
Speaker 3: such a bad mood? That's like, no, I didn't know
26:59
Speaker 3: that was the thing.
27:01
Speaker 2: Yeah, no, I have read a similar piece of research
27:05
Speaker 2: on that, and I definitely, I definitely think from my
27:09
Speaker 2: own experience that there is that there is a strong
27:13
Speaker 2: correlation between saraendertonin and gut issues gut health. Definitely, definitely, definitely.
27:24
Speaker 2: So if we pick up the next part of the story,
27:28
Speaker 2: so Valeries had her her procedures, when around or when
27:35
Speaker 2: was she then sort of allowed to go home?
27:38
Speaker 3: Oh yeah, so we were only in the hospital for
27:41
Speaker 3: three months, so that wasn't that wasn't too bad. She
27:47
Speaker 3: was set to get released and then she got enerocolitis.
27:50
Speaker 2: Oh no, yeah.
27:52
Speaker 3: Yeah. So initially they put her stomach and her fishilla
27:56
Speaker 3: directly next to each other, on top of each other,
28:00
Speaker 3: and they didn't know what to do with it, so
28:01
Speaker 3: they started bagging it together. And then they're like, that's
28:04
Speaker 3: bad news. You can't do that, Like they have been
28:06
Speaker 3: doing that for a while, and they're like, you can't
28:08
Speaker 3: they go together? So that's how she got intercolitis, so
28:13
Speaker 3: that pushed things back, and then she actually had to
28:15
Speaker 3: get another surgery before we left to place them on
28:18
Speaker 3: opposite sides so they were a little further away, but
28:22
Speaker 3: they were still very close on a little baby. So
28:24
Speaker 3: trying to get two bags on each was so scary terrifying.
28:29
Speaker 3: So my husband and I had to learn how to
28:32
Speaker 3: put on two that were so close. So we had
28:34
Speaker 3: a lot of weaking issues and we oh my gosh,
28:39
Speaker 3: this was scary, but we we did it. And I
28:42
Speaker 3: think I would say I'm a pro. Ask me big now,
28:46
Speaker 3: like I put them on, takes me both three minutes.
28:49
Speaker 2: It's great, and you bound over sort of the years.
28:53
Speaker 2: A few little sort of tips and tricks with colostomies
28:58
Speaker 2: and and the how to sort of um help I
29:04
Speaker 2: guess would be, yeah, would you like to share a
29:06
Speaker 2: couple of those?
29:07
Speaker 3: Yes, So Cavalon, I don't know if you guys use cavalon.
29:12
Speaker 3: That is amazing skin protected barrier that you put on
29:18
Speaker 3: around this soma and then okay, so if you have
29:23
Speaker 3: very like liquid output. This changed our lives because we
29:30
Speaker 3: would go through I mean, insurance cover extra bags and
29:34
Speaker 3: it was weird because they only covered one bag even
29:37
Speaker 3: though she had two, Like they were like, no, they
29:42
Speaker 3: just wouldn't do it. So we had to end up
29:44
Speaker 3: spending way too much extra money on that. So we're like,
29:47
Speaker 3: we need to find ways to keep this from leaking.
29:50
Speaker 3: So we put tampons in the bay and then it
29:54
Speaker 3: absorbed everything and she didn't leak, and it made a
29:56
Speaker 3: huge difference because you know, the leaking would cause like
30:00
Speaker 3: chemical burns on our tommy and then the bags wouldn't stick,
30:03
Speaker 3: and it was it was just like an ongoing process.
30:06
Speaker 3: You would have to do like twelve big changes a
30:08
Speaker 3: day for each side. It was just like all we did.
30:12
Speaker 3: So yeah, tampons, if it's very liquidly use those. It's
30:16
Speaker 3: a life change here. Also, we have this ring barrier
30:20
Speaker 3: stuff that's pretty gummy like that we put it directly
30:22
Speaker 3: in our belly button because it's so close to her
30:24
Speaker 3: belly button to kind of make it same level as
30:27
Speaker 3: her skin. I know a lot of people used to
30:29
Speaker 3: storma powder, but that doesn't really work with salerie, so
30:33
Speaker 3: we just do the kvalon, the little the ring barrier
30:37
Speaker 3: in our belly button and then for us, the goal
30:41
Speaker 3: was to make sure the stomach is completely clean and dry,
30:47
Speaker 3: and like wash it. You know, you can't just just
30:51
Speaker 3: like a wipe of water. No, it has to be
30:52
Speaker 3: nice and let it dry, and you know it might
30:55
Speaker 3: leak while you're trying to change it, but drying it
30:57
Speaker 3: is what is you know, very important. And then warming
31:03
Speaker 3: the bag. Warming the bag has changed a lot. So
31:07
Speaker 3: what I do as I sit on the bag while
31:10
Speaker 3: I'm getting everything else ready, so it's like nice and warm,
31:14
Speaker 3: and then I hold it on and that has also
31:17
Speaker 3: made a huge difference. So make sure it's a little warm,
31:20
Speaker 3: not too hot. You don't want to bring your skin,
31:22
Speaker 3: but it's it's made. It's Yeah, it's awesome.
31:29
Speaker 2: It makes total sense as well. I mean every everything
31:32
Speaker 2: you said there about making sure it's driving so you
31:34
Speaker 2: warm the bag, having issues with leaking as well. Yeah,
31:40
Speaker 2: it makes total sense. So if yeah, if anybody's listening,
31:43
Speaker 2: then by by all means, try those try those tips
31:46
Speaker 2: because they sound like a bit of a game changer
31:48
Speaker 2: for you.
31:49
Speaker 3: Oh yes, my nurse actually, so Valerie's had a nurse
31:52
Speaker 3: since we got home after three months, and she tells
31:57
Speaker 3: everybody that trick. She's just like all these parents and
32:00
Speaker 3: they were so excited about it. So I'm like, yay,
32:04
Speaker 3: I am glad I could have helped. So if I
32:05
Speaker 3: could help anyone else, Tampon's were great.
32:08
Speaker 2: Well, well I'm sure you have. I'm sure there will be.
32:11
Speaker 2: There's plenty of people and I know that listen to
32:13
Speaker 2: this this show who have young children with whether they
32:20
Speaker 2: have long segment, whether they have a different type of hairshprunks,
32:25
Speaker 2: who have colostomy bags and get messages from people who
32:31
Speaker 2: listen to the show each day and they tell me
32:34
Speaker 2: about bags and this, that and the other, and if
32:37
Speaker 2: they if they are listening, then by all means try
32:41
Speaker 2: those out because they sound they sound really really beneficial.
32:46
Speaker 2: So no, thank you, thank you so so much.
32:50
Speaker 3: And also when she was a really little baby, which
32:53
Speaker 3: helps is do a dirm if you've ever heard of that,
32:57
Speaker 3: it's it's like skin like and and she was a baby,
33:00
Speaker 3: we used that a lot because the baby bigs didn't
33:02
Speaker 3: have like the nice outside that helped stick to the skin.
33:07
Speaker 3: So doing also was a huge help.
33:09
Speaker 2: Yes, absolutely, absolutely, no, that's fantastic, Thank you ever so
33:14
Speaker 2: much for that. So you went home off to sort
33:16
Speaker 2: of three months or so.
33:20
Speaker 3: Yeah, we went home three months. It was a couple
33:22
Speaker 3: of days before my birthday, so I was so excited.
33:24
Speaker 3: I was like, all I want for my birthday is
33:26
Speaker 3: my baby to come home. And she did so that
33:28
Speaker 3: was great. But yeah, the moment we got home, it
33:32
Speaker 3: was terrifying and we're like, oh my gosh, she's home.
33:34
Speaker 3: Now how do we do all this? We had to
33:37
Speaker 3: learn how to do her TPN. She was on TPN
33:42
Speaker 3: twenty two hours a day, so she had a two
33:43
Speaker 3: hour window, so that was very, very scary. But our
33:48
Speaker 3: nurse Bethany would come at any time. We'd call her
33:52
Speaker 3: and be like, I don't know how to do this.
33:54
Speaker 3: This this scary, Like she did all the dressing changes
33:58
Speaker 3: and yeah, shout out to Bethany. She is the best
34:01
Speaker 3: nurse I have ever met. Amazing superhero. Yeah. So she
34:07
Speaker 3: she really helped change her lives and she still whip
34:09
Speaker 3: us so she's are still our nurse, so she's been
34:12
Speaker 3: there since date one. But she taught us all the stuff,
34:15
Speaker 3: and yeah, it was it was very overwhelming though, trying
34:17
Speaker 3: to learn how to do everything, but we did it.
34:19
Speaker 3: And once you can hang of it, it's not as
34:21
Speaker 3: scary as you'd think.
34:23
Speaker 2: No, no, and I imagine it just becomes every day
34:27
Speaker 2: for you.
34:28
Speaker 3: Oh yeah, it's it's like it's so easy. And you know,
34:33
Speaker 3: obviously you have to be scary and keep everything clean.
34:36
Speaker 3: You know, it's difficult with a child that's moving around
34:38
Speaker 3: a lot, but hey, it's yeah, you learn, you learn
34:43
Speaker 3: how to do it. It seems really scary at first,
34:45
Speaker 3: but it's not. That's the way that they live and
34:49
Speaker 3: that's you know, they have to make it normalized almost
34:53
Speaker 3: that it's not this big scary thing because all my siblings,
34:58
Speaker 3: I mean not all of them, but at first was
35:01
Speaker 3: kind of scared to like be around Veil or like
35:03
Speaker 3: pick her up, Like how do I pick her up?
35:05
Speaker 3: With this stuff? How do I? You know? And she's
35:09
Speaker 3: just like any other any other kid. You be a
35:13
Speaker 3: little extra careful, but to be scared, it's.
35:15
Speaker 2: Fine, No, absolutely, Yeah, the Hoshprung's children are a lot
35:21
Speaker 2: you know, yes, I'll just have to be a bit careful.
35:23
Speaker 2: And you know that there's there's differences that we have
35:26
Speaker 2: that that other people don't. But you know too, to
35:30
Speaker 2: a lot of people, we we are we are normal.
35:32
Speaker 2: We we do everything that everybody else does and you know,
35:35
Speaker 2: and should be treated as such. Now, I I usually
35:45
Speaker 2: have transitions and are able to transition from one one
35:50
Speaker 2: point to the next. But I guess for this next point,
35:56
Speaker 2: there is probably no transition to it that's going to
36:00
Speaker 2: do any justice or be worthy. It's quite a tricky subject.
36:07
Speaker 2: You mentioned a couple of times your your late husband,
36:12
Speaker 2: and I know you wanted to talk talk a little
36:16
Speaker 2: bit about him.
36:18
Speaker 3: Yes, so him and I his name is Nate. We
36:21
Speaker 3: were together for fourteen years and we were married for
36:27
Speaker 3: four though he took forever to ask you to marry him,
36:29
Speaker 3: and I stayed with him because I just love him
36:30
Speaker 3: so much. I was like whatever, but yeah, so it
36:35
Speaker 3: was really hard on both of us, just like dealing
36:38
Speaker 3: with all vous stuff and just like her leaking all
36:44
Speaker 3: the time, and like her pump would go up all night.
36:50
Speaker 3: And so we got an IV poll. So, oh my gosh,
36:52
Speaker 3: if you don't have an IV pole or they didn't
36:55
Speaker 3: send you home with one, that has changed my life
36:59
Speaker 3: with the air bubbles because those literally all night it
37:02
Speaker 3: would just go off. And nobody even told us to
37:05
Speaker 3: get an eyeb pole. So I was like, that would
37:08
Speaker 3: have been very helpful to know. And luckily the only
37:11
Speaker 3: reason I got an eye people this is later I
37:14
Speaker 3: had a daughter, another daughter who was born early who
37:17
Speaker 3: had the end had to go home with the n
37:18
Speaker 3: G two and they gave us an ib pole for that,
37:23
Speaker 3: and I'm like, I'm gonna use that for Valerie. That's amazing.
37:26
Speaker 3: So when she was done with it, obviously, but but yeah,
37:29
Speaker 3: so it was you know, a lot of stress with
37:35
Speaker 3: val and a lot of late nights. Fell also has
37:40
Speaker 3: a ton of allergies, so we couldn't really go anywhere
37:44
Speaker 3: together or do anything. Really. Someone always had to be
37:47
Speaker 3: with Valerie. We're the only two people who knew how
37:50
Speaker 3: to do her medical stuff, so it was just kind
37:54
Speaker 3: of hard for both of us to just try to
37:55
Speaker 3: like live our lives as well. Like we barely had
37:58
Speaker 3: time together along and one of us was with her
38:04
Speaker 3: taking to appointments, doing all this. And also she's allergic
38:10
Speaker 3: to CHG so the like we see, she liked to
38:15
Speaker 3: put her dressings on oka and like to clean like
38:18
Speaker 3: some people use Baba dine, So there was another hole.
38:20
Speaker 3: That's another whole mess too. But yeah, so we're home
38:26
Speaker 3: doing great, you know, besides being terrified of everything and
38:30
Speaker 3: trying to make sure we're doing everything right. And then
38:34
Speaker 3: I become pregnant, again when Valerie was eighteen months so old,
38:40
Speaker 3: so I'm like, holy moly, we weren't planning on having
38:43
Speaker 3: another one until you know, Valerie was a little older.
38:45
Speaker 3: We get all her stuff figured out. Uh, so yeah,
38:49
Speaker 3: it was that was a surprise. So yeah, everything is,
38:56
Speaker 3: you know, going, well, my other daughter comes early, I'm
38:59
Speaker 3: in the hospital and then you know, Nates with Vale
39:05
Speaker 3: in the hospital and she had to be in the
39:08
Speaker 3: NICCU the whole time, and I was just I wanted
39:13
Speaker 3: to see her and whatever. So we once I got
39:16
Speaker 3: released from the hospital, it's about Christmas and Valerie scratches
39:22
Speaker 3: her line off like rips and open in the middle
39:26
Speaker 3: of the night and we're like, oh my gosh, and
39:29
Speaker 3: it looks terrible. We wake up and we're freaking out, like,
39:32
Speaker 3: oh my gosh, how did she do that? Because we
39:34
Speaker 3: always put gloves on her hands when she's like those
39:36
Speaker 3: baby gloves and then I don't know if you call
39:39
Speaker 3: them the same thing where you're at, but you're called
39:41
Speaker 3: posties that we just like put around to to like
39:44
Speaker 3: velcrow around so that she couldn't get him off. So
39:48
Speaker 3: she ends up ripping them off with her teeth in
39:51
Speaker 3: the middle of the night and scratches everything, and she
39:55
Speaker 3: has so many allergies. She has exhama. She's allergic to
39:57
Speaker 3: like every animal in the world, every food in the world,
40:02
Speaker 3: which she doesn't eat, so that's just crazy. She's so
40:05
Speaker 3: allergic to everything. So yeah, she rips this up. We're
40:09
Speaker 3: freaking out. I have our newborn other baby, Violet in
40:13
Speaker 3: the hospital, still in the NICU. We're like, oh my gosh,
40:17
Speaker 3: should we call immediately? And we're like, she ripped it off.
40:19
Speaker 3: Can we start an antibiotic right away? And they're like, no,
40:22
Speaker 3: we can't. Just give it a few days and see
40:24
Speaker 3: how it goes. I'm like, okay, can't we And I
40:26
Speaker 3: understand that because it's you know, you can get antibiotics
40:30
Speaker 3: if you take them too often, you can you know.
40:33
Speaker 3: So so yeah, we're like, okay, well, fingers crossed, poor Christmas.
40:39
Speaker 3: Let's hope this doesn't happen. And sure enough, she gets
40:42
Speaker 3: one hundred and three point five fever. You have to
40:45
Speaker 3: rush you to the hospital. And that was your first
40:49
Speaker 3: mind infection ever. Uh, it was very terrifying. We had
40:54
Speaker 3: that one night in the icee. You there was nothing
40:57
Speaker 3: but a single chair and we just left on that
41:01
Speaker 3: and we were in the hospital for about a week
41:04
Speaker 3: and we come home and they's just learned so guilty
41:09
Speaker 3: about it. He thinks it's his fault that he put
41:12
Speaker 3: her in the wrong pajamas, which there isn't a wrong
41:15
Speaker 3: type of pajamas. We had zip and snap, and he
41:18
Speaker 3: thinks because of this snap pajama, she was able to
41:20
Speaker 3: like snap it open, which absolutely was not the case.
41:23
Speaker 3: I mean, you know the jamas can you can take
41:26
Speaker 3: them off whatever. So he's going really guilty about it,
41:29
Speaker 3: and you talk about it a bunch, and I thought
41:31
Speaker 3: it was my fault because I gave her a bath
41:33
Speaker 3: and I was like, what are some of the poopy
41:37
Speaker 3: water like got on? So we're going back and Forre
41:40
Speaker 3: it's like, okay, so neither of our faults. We're fine.
41:43
Speaker 3: It happens. It's just a one line infection. Because they
41:47
Speaker 3: had made us belief that she only had a certain
41:49
Speaker 3: amount of spots you can get a line, and since
41:52
Speaker 3: you had only four spots to get her line, and
41:56
Speaker 3: so we're thinking, oh my gosh, one is wasted, it's gone.
42:00
Speaker 3: Now she has three spots left, which now I found
42:05
Speaker 3: out that is absolutely not the case. You can actually
42:09
Speaker 3: like my surgeon now because she's had several line infections.
42:12
Speaker 3: Since my husband has hassed away, he's breathed the same one.
42:17
Speaker 3: He's done so many crazy things. He's amazing. So yeah,
42:22
Speaker 3: his goal to get her to eighty. So you can't
42:25
Speaker 3: reuse lines depending obviously if you know, it's no good.
42:29
Speaker 3: But we were so much misinformation we thought like, wow,
42:34
Speaker 3: we just took off one slab over life, you know
42:38
Speaker 3: what I mean. So yeah, he was feeling really guilty
42:41
Speaker 3: about that. We both talked and were like, you know,
42:44
Speaker 3: we're there for each other. We'll get through this. It's
42:49
Speaker 3: not the end of the world. So yeah, Literally, when
42:55
Speaker 3: Violet was a month old, so still gonna pick you,
43:00
Speaker 3: we would take terms going to see her, and yeah,
43:05
Speaker 3: one night he decided he didn't want to see her,
43:07
Speaker 3: which I thought it was weird because we were just
43:09
Speaker 3: taking turns. He's like, you should go see he and
43:11
Speaker 3: so I'm like, well, I just say yesterday, like all
43:13
Speaker 3: day you can go see her, and he's just like, no,
43:15
Speaker 3: I don't want you. And I'm like, okay, well, why
43:17
Speaker 3: don't we just both take a break together because we
43:19
Speaker 3: never get time together to do anything. So let's just
43:24
Speaker 3: she'll be fine one day in the hospital alone and
43:28
Speaker 3: so we watched her favorite show and whatnot, and then
43:33
Speaker 3: you know, we went to ben and kissed like normal,
43:35
Speaker 3: and I wake up in the morning and yeah he
43:40
Speaker 3: his car said on the driveway. And so back, note,
43:45
Speaker 3: my dad had passed away when a Valerie he would
43:48
Speaker 3: like right when we got back from the hospital, which
43:51
Speaker 3: was also traumatic. I had. I had to rush to Wisconsin,
43:57
Speaker 3: which is five hundred miles away to go see my
43:59
Speaker 3: dad where he passed away and leave my late husband
44:04
Speaker 3: with Valerie a newborn at home, so that was also crazy.
44:07
Speaker 3: But yeah, anyway, so my mom didn't want to be alone,
44:11
Speaker 3: so she moved here from Wisconsin and lived with us
44:13
Speaker 3: and was helping out with Valerie and everything. So back
44:17
Speaker 3: to the story. So I woke up and I got
44:21
Speaker 3: my mom. We ended up finding mate he had taken
44:28
Speaker 3: his own life, and yeah, that just to completely changed
44:38
Speaker 3: my life about life. It was the guilt of thinking
44:43
Speaker 3: because of all the misinformation we got about her lines,
44:47
Speaker 3: which that's not the case. I want everybody to know
44:49
Speaker 3: the options. There are so many different places you can
44:52
Speaker 3: put a line. I know there's only a certain amount
44:54
Speaker 3: of good of veins, but there's so many cool tricks
44:58
Speaker 3: that my new doctor did into They said they did
45:00
Speaker 3: it where they cleared the infection but kept the line in,
45:04
Speaker 3: and then once the infection was clear, they put in
45:06
Speaker 3: a temporary one and then replaced it completely, same vein,
45:11
Speaker 3: same everything. So hey, it it's not the in the world.
45:17
Speaker 3: There's options in science is getting so much better. I'm
45:19
Speaker 3: seeing stuff about stealth, some research and all that kind
45:23
Speaker 3: of fun stuff. So yeah, if you are feeling scared,
45:28
Speaker 3: and don't ever think anything that you do with yourself
45:35
Speaker 3: with your child who has a central line, that it's
45:41
Speaker 3: not your fault. It's not your fault. Things happen. Germs
45:44
Speaker 3: are sneaky that get in there. You know, Valerie scratchy,
45:48
Speaker 3: so she you know, it's it's just it happens. And
45:53
Speaker 3: she's still thribing and living and she's had a couple
45:55
Speaker 3: of line infections since then, so it's never your fault
45:59
Speaker 3: no matter what.
46:00
Speaker 2: Absolutely, thank you so much for sharing that and being
46:06
Speaker 2: being brave enough to talk about that, because I know
46:08
Speaker 2: it's an incredibly difficult subject. I know it goes without
46:11
Speaker 2: saying bars anyway that we'll see. Very very sorry to
46:15
Speaker 2: hear I'm a bounce passing, but you are right. You know,
46:20
Speaker 2: there's a lot of misinformation. There's a lot of misinformation
46:23
Speaker 2: out there, and I know we talked a little bit
46:25
Speaker 2: beforehand about you do so much research, so much research
46:30
Speaker 2: on lines, on hirshprungs, on procedures, on all sorts. And
46:37
Speaker 2: if this is something I think, you know, anyone can
46:41
Speaker 2: take away from this, it would be to definitely do
46:45
Speaker 2: your own, you know, thorough research, you know, and avoid
46:50
Speaker 2: avoid that misinformation. I guess.
46:53
Speaker 3: Yeah, they had told us that Valerie wasn't going to
46:56
Speaker 3: live past two, so that was also and she's almost four,
47:00
Speaker 3: but yeah, they it was so much stuff that we
47:03
Speaker 3: just didn't know. So your research is amazing, Like they
47:05
Speaker 3: didn't know what to do with Valerie after she was born.
47:07
Speaker 3: I did my own research and found a professional who
47:12
Speaker 3: does hirsprungs actually in my home or not my hometown,
47:16
Speaker 3: in the city I'm living in currently. He happened to
47:18
Speaker 3: be right here and they didn't even tell me, so
47:20
Speaker 3: I found him. His name is doctor Mercer. He is amazing.
47:24
Speaker 3: He's still currently doing like research and stuff on it,
47:27
Speaker 3: and he has changed our lives. Like if I wouldn't
47:29
Speaker 3: have found him, I have no idea if Valerie would
47:31
Speaker 3: even still you know, like be here because none of
47:34
Speaker 3: the doctors knew anything about but to do so after
47:37
Speaker 3: finding him, Yeah, do your research because he's changed our
47:41
Speaker 3: lives and has so many cool ideas of what to
47:43
Speaker 3: do with Valerie now and how they get Yeah, it's
47:47
Speaker 3: just he's wonderful. And yeah, I highly suggest researching. And
47:53
Speaker 3: there's people out there that you know, have this, you know,
47:57
Speaker 3: similar or not similar or anything, that can just give
47:59
Speaker 3: each other her tips and advice. And I found some
48:02
Speaker 3: Facebook groups could be so beneficial. So yeah, just looking
48:08
Speaker 3: up Stone, just find out it's great and be your
48:11
Speaker 3: own advocate.
48:12
Speaker 2: So definitely, definitely, And just all we've got sort of
48:15
Speaker 2: about a minute or so before we wrap up. Just
48:19
Speaker 2: just on on Valerie again. I know you said that,
48:22
Speaker 2: you know, she's four. Now, she's thriving, she's doing really well.
48:27
Speaker 2: Hopes for her sort of in the future, what do
48:29
Speaker 2: you see.
48:30
Speaker 3: For Yes, So her last surgery, which was in September,
48:36
Speaker 3: they went in and they recited her YouTube. They recited
48:40
Speaker 3: and they removed her mucus Christela. So now we ask
48:43
Speaker 3: one stoma and they put the well, they didn't remove it,
48:46
Speaker 3: so she still has all of her nonworking intestines and
48:48
Speaker 3: they put them inside to drain, which is amazing. I'd
48:51
Speaker 3: never heard of it, but my doctor was just like,
48:53
Speaker 3: let's try it, and it's been going great. And while
48:56
Speaker 3: he was in there, he said that her not working
48:58
Speaker 3: intestines removing, so I was like, what does that mean.
49:02
Speaker 3: He's just like, we're gonna just keep get hurt because
49:05
Speaker 3: she still vomits a lot, like she vomits a lot
49:08
Speaker 3: still because she's so short, like I mean so long segment,
49:11
Speaker 3: like she has very little working intestines. But the fact
49:15
Speaker 3: that they were moving was just amazing. So in the
49:17
Speaker 3: future he wants to try to slowly add more and
49:20
Speaker 3: more mouel and try to reconnect and avoid a transplant.
49:27
Speaker 2: That would be amazing. That would be that's fantastic up
49:31
Speaker 2: like it's brilliant. No, so so pleased, but no, thank you,
49:37
Speaker 2: thank you, thank you ever so much for joining me,
49:40
Speaker 2: for sharing Valerie's story, for sharing, and a bunch of
49:44
Speaker 2: h hints and tips as well, which I think will
49:46
Speaker 2: be greatly appreciated by by a lot of people who've
49:49
Speaker 2: been listening to.
49:50
Speaker 3: This bill quick I had one mass tip go for it,
49:54
Speaker 3: so you know, like the little ties that come with
49:56
Speaker 3: girls dresses that you used to like wrap around. I.
50:01
Speaker 3: So I have a little mini backpack that I bought
50:04
Speaker 3: for her that she carries her own TP and walks
50:06
Speaker 3: around in now, and I wrapped the tie around to
50:10
Speaker 3: keep it from her taking it off. And then when
50:12
Speaker 3: she sleeps, I also wrap the tie around so that
50:15
Speaker 3: it prevents it from like I always are scared of
50:18
Speaker 3: what's gonna wrap around her neck or something, you know
50:19
Speaker 3: what I mean. And that is literally helpful, And I'll
50:22
Speaker 3: keep it in place in that and making that uncomfortable
50:25
Speaker 3: so you're not laying on like everything.
50:28
Speaker 2: So yeah, fantastic. Oh that's a lovely, lovely sentiment to Finishyl.
50:32
Speaker 2: Thank you ever so much for joining me, and I
50:35
Speaker 2: wish you at Valerie and all the foundly the very
50:39
Speaker 2: very best for the future.
50:41
Speaker 3: Yes, thank you so much. It was wonderful talking to you.
50:49
Speaker 1: Thank you for listening to the podcast. Find us on
50:51
Speaker 1: Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes
50:57
Speaker 1: on Spotify by searching Tom's Hirshbrungs podcast.
51:06
Speaker 2: Teasing te