Latest / Tom's Hirschsprung's Podcast / Episode 83 - With Anna Obendorfer

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Episode 83 - With Anna Obendorfer · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode eighty three of
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Speaker 1: Tom's Hirshbrungs Podcast. I am delighted to be joined by
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Speaker 1: Anna Obendorfer and we are going to talk about all
0:54
Speaker 1: about your son and his Hirshprungs over the last couple
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Speaker 1: of years. So welcome to the podcast.
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Speaker 2: First of all, great, Yeah, I'm so excited to be here.
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Speaker 2: Thanks for having me done.
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Speaker 1: Not at all, not at all. So I guess start
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Speaker 1: usually where we where we usually start from the top
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Speaker 1: with your son, if you don't mind.
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Speaker 2: Yeah. So my son's name was Stirling. He just turned
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Speaker 2: two years old this week, which was a very exciting
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Speaker 2: milestone for him. So yeah, he was born on June
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Speaker 2: second of two thousand and three. I had a super
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Speaker 2: normal pregnancy with him. I also have an older daughter
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Speaker 2: as well she is for just for context, and she
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Speaker 2: does not have earth bricks disease. So yeah, I had
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Speaker 2: a very normal pregnancy. Here in the States, we get
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Speaker 2: something at twelve weeks. It's called an NIPT test. It's
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Speaker 2: like a it's called nep test for short. It does
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Speaker 2: it tests for like the sex of the baby and
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Speaker 2: for any kind of like chromosomal abnormalities. It's pretty standard
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Speaker 2: here now I'm not sure if they do it in
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Speaker 2: the UK, but we got that done in twelve weeks,
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Speaker 2: no red flags, nothing. We waited to find out if
2:13
Speaker 2: we were having a boy or girl until he was delivered,
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Speaker 2: so we did not know that he was gonna be
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Speaker 2: a boy. But yeah, nothing on our genetics freeding test.
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Speaker 2: It doesn't screen for like intense like like chroma like.
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Speaker 2: It's mainly for like Down syndrome or trisomy like things
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Speaker 2: that are kind of more incompatible with life. So it
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Speaker 2: wouldn't have ever been able to pick up the hersprungs
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Speaker 2: on there because you can't test for it. But just
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Speaker 2: for context, totally regular pregnancy. I didnify blood pressure. I've
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Speaker 2: had it with both my pregnancies. It was monitored by
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Speaker 2: my midwife. Like I said, no concerns. Sterling was delivered
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Speaker 2: at forty weeks and one day, so he came one
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Speaker 2: day after his duw date. And what is interesting about
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Speaker 2: my delivery specifically is there was actually maconium in my
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Speaker 2: water when I like, my water was broken. So they
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Speaker 2: the our team there saw that there was mconium in
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Speaker 2: the water, and at our hospital, the protocol is to
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Speaker 2: just have extra pediatricians and baby versus like in the
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Speaker 2: room when they're born because inhaling the maconium can make
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Speaker 2: it difficult for them to breather potentially like lead to
3:27
Speaker 2: an infection. So he was born very easy delivery, and
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Speaker 2: they he came out breathing great app Guard scores and
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Speaker 2: was healthy and very big. He was eight pounds four
3:40
Speaker 2: ounces when he was born. But an interesting thing also
3:43
Speaker 2: that leads indoor story is that one of the first
3:46
Speaker 2: things that I said to my husband was that I like,
3:49
Speaker 2: I thought something was wrong with them. I just like
3:52
Speaker 2: when he was born, had this like overwhelming kind of
3:55
Speaker 2: feeling of like something is wrong. And my husband, Edward
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Speaker 2: assured me that I was tired. It was the delivery.
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Speaker 2: You kind of can become paranoid as a mother about
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Speaker 2: things that are not the case. I also have a
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Speaker 2: background in childcare. I was in nanny for twelve years
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Speaker 2: of taking care of a significant amount of infants and children,
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Speaker 2: so I have a pretty good handle on baby care
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Speaker 2: and what is more typical of a newborn and what
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Speaker 2: is not typical of a newborn. And my husband had
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Speaker 2: thought that I was concerned about what he's breathing because
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Speaker 2: of the malconium, which was in my head, not what
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Speaker 2: I was concerned about. I just like felt that something
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Speaker 2: was off with him, and he had been probably born
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Speaker 2: at this point. He was probably like ten minutes old
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Speaker 2: when I had said that, and the nurses already assured
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Speaker 2: me he was breathing fine. He looked amazing. They wrapped
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Speaker 2: him up, gave him to me. We went up to
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Speaker 2: postpartum because they move you in rooms here, and he
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Speaker 2: was I nursed him so he latched really quickly. He
5:02
Speaker 2: nursed really well, and he went to sleep, and we
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Speaker 2: were delighted that we had a new baby. We were
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Speaker 2: very excited. Like I said, I have a daughter, so
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Speaker 2: it was exciting to have a boy, one of each.
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Speaker 2: My husband was very happy. My daughter was born during COVID,
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Speaker 2: so she was just shy of too with this point
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Speaker 2: and we had never left her, mostly because of COVID,
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Speaker 2: we couldn't really do anything, and I was very concerned
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Speaker 2: about getting home so we could be with her because
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Speaker 2: she had never been left alone with anyone besides my
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Speaker 2: husband or mey. So our plan originally was we were
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Speaker 2: going to do just twenty four hours in the hospital,
5:43
Speaker 2: we were going to be discharged, and then we would
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Speaker 2: go see our pediatrician, who I have a wonderful relationship with,
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Speaker 2: the next day and as long as he was cleared
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Speaker 2: for everything was healthy. The team at the hospital greet
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Speaker 2: that was totally fine, as I had a great, easy delivery,
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Speaker 2: he had no breathing issues. So we settled in for
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Speaker 2: the first like night. He he just like I said,
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Speaker 2: I had a feeling that there was just something off
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Speaker 2: about him and he mainly are Like the first red
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Speaker 2: flag to me was that he did not want to nurse,
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Speaker 2: and he didn't want a nurse in a way that
6:21
Speaker 2: like he just was like uninterested in it, or he
6:23
Speaker 2: would have preferred a bottle, Like he just had no
6:26
Speaker 2: interest in in feeding. Like he wouldn't cry, He just
6:31
Speaker 2: would look around and like be awake for a little
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Speaker 2: bit and then go back to sleep, like we did
6:36
Speaker 2: all the tricks of like undressing them, particular their feet,
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Speaker 2: keeping them awake. We offered a bottle because I was like,
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Speaker 2: maybe he's just uninterested in nursing, even though he had
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Speaker 2: had a really big feed right when he was born,
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Speaker 2: so I wasn't very concerned about it. The nurses were like, oh,
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Speaker 2: it's been a couple hours since he's eaten, and I
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Speaker 2: was like, yeah, I know. I keep like like offering
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Speaker 2: him to nurse and he's not interested in it. And
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Speaker 2: they were like, oh, let's do all the things, and
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Speaker 2: I was like, no, we are like he just doesn't
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Speaker 2: want to. And by this point, he had passed maconium too,
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Speaker 2: Like he had passed so much maconium, like more than
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Speaker 2: my daughter ever had, and he had already like peed,
7:17
Speaker 2: so like I was confident that he was not dehydrated.
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Speaker 2: He had already passed the maconium, which meant that like
7:24
Speaker 2: he was getting milk from mercy because that's what pushes
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Speaker 2: it out. So I was like, he just had a
7:28
Speaker 2: long journey here, he's tired. We're just gonna let him sleep.
7:32
Speaker 2: And he would kind of rouse and like act like
7:36
Speaker 2: he wanted to eat. He would eat for five minutes
7:38
Speaker 2: and then he kind of wouldn't and I was like,
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Speaker 2: this is just like odd because a baby's primary directive
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Speaker 2: normally is to eat, and if they're not eating, they're
7:48
Speaker 2: they're usually crying. And he was not cragg And my
7:53
Speaker 2: daughter was also a very like mellow baby. She had
7:56
Speaker 2: no she hardly cried. So my husband was like, this
7:59
Speaker 2: is just how our babies are. They just like don't cry.
8:03
Speaker 2: And I was like, oh, okay, that's a little weird.
8:09
Speaker 2: And then yeah, but Norah in Flags, the nurses came,
8:12
Speaker 2: they checked him out. They did here in the United States,
8:15
Speaker 2: they also do a it's called a metabolic screening where
8:18
Speaker 2: they do a blood healed borck on their heel just
8:22
Speaker 2: to kind of like test to make sure bet nothing
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Speaker 2: is going on. It's really standard, you do it before
8:27
Speaker 2: you leave the hospital. So like he got that done,
8:30
Speaker 2: he got his hearing test done, everything was great to go.
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Speaker 2: We were discharged like right at the thirty hour mark,
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Speaker 2: with instructions to follow up with our pediatrician the next day,
8:41
Speaker 2: just because he was going home like earlier than normal.
8:44
Speaker 2: Normally they like to keep you for like forty eight
8:46
Speaker 2: like two days generally, but because we had already had
8:50
Speaker 2: a child, and he was meeting all the milestones that
8:52
Speaker 2: they wanted. They were like, you guys can go home,
8:55
Speaker 2: and I was like, this is great. We went home.
9:00
Speaker 2: He continued to passmocnebium and then started showing just regular
9:06
Speaker 2: coop breastmelk poop is like really yellowy and seedy. It's
9:09
Speaker 2: very weird he was doing that. I was a bit
9:13
Speaker 2: concern that, like he wasn't peeing, Like I wasn't seeing
9:17
Speaker 2: a lot of like urine in his diaper, which was
9:21
Speaker 2: a little bit of a red flag also to me.
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Speaker 2: And at this point, like he still wasn't nursing in
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Speaker 2: the capacity or wanting to take a bottle or a passy,
9:29
Speaker 2: and he was just not acting to me like what
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Speaker 2: a what a baby acts like. And we had been
9:36
Speaker 2: warned that they say that sometimes boys are sleepier and
9:38
Speaker 2: they take like a little bit longer to kind of
9:40
Speaker 2: like wake up to the world around them, which, like
9:45
Speaker 2: I don't really know if I believe or not, but
9:48
Speaker 2: that was kind of like our reassurance when I had
9:51
Speaker 2: brought up that. I was like, he seems kind of
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Speaker 2: just like out of it, and he doesn't. I just
9:56
Speaker 2: kept saying like he doesn't seem to have the desire
9:58
Speaker 2: to like keep himself alive, Like he doesn't really have
10:02
Speaker 2: an interest in eating. He's not crying. He was sleeping
10:05
Speaker 2: for like stretches of like four to five hours that
10:10
Speaker 2: first like two days. But he wasn't losing weight. So
10:13
Speaker 2: they were like, he's not losing weight, like he's he's pooming,
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Speaker 2: he's peeing, like he's not dehydrated and everything. His breathing
10:21
Speaker 2: is perfect, like he's he's a perfect baby. We're like,
10:24
Speaker 2: all right, So yeah, we came home when he was
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Speaker 2: two days old, continued to just kind of take care
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Speaker 2: of him. I still could not shake this feeling and
10:34
Speaker 2: was still dressing to my husband that I felt like
10:36
Speaker 2: something was off without hand. We saw our pediatrician the
10:40
Speaker 2: next day. She did a weight check on him. I
10:44
Speaker 2: had explained to her that I was a little concerned
10:47
Speaker 2: about his sleepiness and I was concerned that like I
10:49
Speaker 2: wasn't seeing a lot of like wet diapers, and she
10:52
Speaker 2: had been like, oh, because he's like stooling so much,
10:57
Speaker 2: like you're probably just not seeing the yurin in it,
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Speaker 2: because like so much like stool and like you really
11:03
Speaker 2: want to see like him pooping because that shows that
11:05
Speaker 2: like he's getting milk, it's pushing everything down and out
11:09
Speaker 2: through his body. He's like, clearly eat it. And I
11:12
Speaker 2: was like, all right. He did have an old tongue tie,
11:17
Speaker 2: which is kind of something common here in the United
11:20
Speaker 2: States that they check for because it can make latching difficult.
11:24
Speaker 2: So she noticed that he had a small tongue tie
11:26
Speaker 2: and she was like, I can they just like clip it.
11:29
Speaker 2: It's basically just like too much like, uh, fab work
11:34
Speaker 2: is not the right word.
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Speaker 1: Uh what you mean?
11:36
Speaker 2: Yeah, yeah, yeah. So she had offered to clip it
11:41
Speaker 2: in the office and I was like, okay, we'll do that.
11:44
Speaker 2: It was super quick. He didn't even cry when they
11:48
Speaker 2: did this, which was like I was like, don't don't
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Speaker 2: you see that? That is bizarre And she was like no,
11:55
Speaker 2: like he's just like a sleepy baby. And she also
11:57
Speaker 2: was like, you're treating him like when I would. I
12:00
Speaker 2: know with my daughter, she was like three almost four
12:02
Speaker 2: days old because we stayed the claxic amount of time
12:05
Speaker 2: in the hospital, and she was like, you would still
12:06
Speaker 2: be in the hospital right now, so like you're anticipating
12:09
Speaker 2: him to act like a three or four year old
12:12
Speaker 2: baby when he's forty eight hours old, and I was like, Okay,
12:18
Speaker 2: that's fine. And day three rolls around, he kind of
12:23
Speaker 2: like starts to perk up in the day more like
12:26
Speaker 2: he's a wake more. He's looking around. But I'm still
12:28
Speaker 2: having a very difficult time getting him to feed in
12:33
Speaker 2: any capacity, because I was like, let's give him a bottle,
12:37
Speaker 2: let's try to give him formula, Like I really need
12:39
Speaker 2: him to start eating, because like this is not a
12:43
Speaker 2: normal volume of food that a baby should be taking in.
12:46
Speaker 2: But he wasn't crying still, he was just hanging out
12:49
Speaker 2: looking around. And another day goes by. He's still passing school,
12:58
Speaker 2: he's still peeing, he's doing all the regular baby things.
13:01
Speaker 2: When he was four days old, he started to drop
13:05
Speaker 2: weight at this point, and that was kind of like
13:08
Speaker 2: the first like actual sign that wasn't me just kind
13:11
Speaker 2: of being like heat some things off with him. And
13:14
Speaker 2: I was like, Okay, he's losing weight, starting to lose weight. Now,
13:17
Speaker 2: he's clearly not getting enough calories to maintain. We really
13:22
Speaker 2: need to focus on like getting some form of nutrition
13:26
Speaker 2: in him. So we did that. My parents came and
13:30
Speaker 2: my siblings came that day to see us and visit
13:34
Speaker 2: with him. And while we were there, is kind of
13:38
Speaker 2: like they were there. It was kind of like the
13:39
Speaker 2: churning point. He really was like awake that day. He
13:42
Speaker 2: had a couple of like really solid feeds, but then
13:46
Speaker 2: he started spitting up and I had my daughter had refloped,
13:50
Speaker 2: so like, I'm pretty comfortable with like a refluxy baby.
13:53
Speaker 2: I know the amounts that is normal. So I was like, Okay,
13:58
Speaker 2: here it goes. He's gonna be a reef baby. He's
14:00
Speaker 2: gonna split up. His stomach is now finally kind of
14:04
Speaker 2: decided like woken up and is like I need to eat.
14:07
Speaker 2: And he was crying a little bit more that day,
14:09
Speaker 2: and I was like, all right, I think maybe we're
14:11
Speaker 2: out of the words with whatever was going on with him.
14:14
Speaker 2: And while we were there, my parents were here. I
14:18
Speaker 2: actually caught my mom like looking at him in a
14:22
Speaker 2: way that like I could tell that she thought something
14:27
Speaker 2: was wrong with him. And she didn't say any of
14:30
Speaker 2: this today, and she she I caught her looking at
14:33
Speaker 2: her him like twice in this way where I was like,
14:36
Speaker 2: she knows something's wrong with him, and my parents laughed
14:39
Speaker 2: and my mom did not say anything to me about this,
14:43
Speaker 2: but I found out months later that like when she left,
14:47
Speaker 2: she had spoken to my dad and had said that
14:51
Speaker 2: she thought something was wrong with him, that she couldn't
14:53
Speaker 2: put her finger on what it was, and my dad
14:54
Speaker 2: was like, let's just not say anything to end about that,
14:58
Speaker 2: like I don't really think it's our which funny enough,
15:02
Speaker 2: like she was correct and I was also correct, but
15:05
Speaker 2: like that kind of like was like gave me another
15:09
Speaker 2: thing about being like I'm calling the pediatrician, like we're
15:12
Speaker 2: gonna go back tomorrow. I really want him looked at.
15:15
Speaker 2: And that night he started vomiting, like arcing vomit across
15:23
Speaker 2: the room, like so much force, and I was like,
15:28
Speaker 2: this is scary and very abnormal. And I had actually
15:31
Speaker 2: thought that he might have pilot works to know this,
15:34
Speaker 2: which is like when there's like a blockage or a
15:36
Speaker 2: twist in your intestine, because one of the big signs
15:38
Speaker 2: of it is like this arcing type of vomit. So
15:43
Speaker 2: I woke my husband up and I was like, Uh,
15:47
Speaker 2: this is what I think is going on. This is
15:49
Speaker 2: why I think he hasn't been eating, because the twist
15:51
Speaker 2: would explain why he couldn't get anything down or through.
15:55
Speaker 2: I need to take him to the emergency room like
15:57
Speaker 2: right now. And he was like, what are you talking about,
15:59
Speaker 2: Like we need to slow down, and I was like, no,
16:02
Speaker 2: I'm taking into the emergency room, like you're gonna stay
16:04
Speaker 2: here with our daughter. This is I kind of cracked
16:08
Speaker 2: him because I at this point thought it, like I said,
16:10
Speaker 2: was pylo orks not says. I was like, he's gonna
16:12
Speaker 2: need surgery, like if this is actually what it is.
16:15
Speaker 2: So I was like, you need like I just need
16:18
Speaker 2: you to know that, and like we're going, like I
16:20
Speaker 2: packed a bag, like a big bag, and I was like,
16:23
Speaker 2: we're we're growing, and we live in Philadelphia and we
16:28
Speaker 2: are extreme like extremely fortunate that like Children's Hospital of
16:32
Speaker 2: Philadelphia it's called chop here is about an eight minute
16:37
Speaker 2: drive for gramas Like we're local actually like in this city.
16:41
Speaker 2: So that made this task also not so daunting knowing that,
16:45
Speaker 2: like you were going, it was right there. I had
16:47
Speaker 2: a very short drive. I brought him into the emergency
16:50
Speaker 2: room home I kind of like very quickly in triage,
16:53
Speaker 2: explained he was five days old at this point. And
16:56
Speaker 2: I will forever give all the nurses in the ed
16:59
Speaker 2: there and everyone that we were with that day because
17:02
Speaker 2: I could not explain what was going on. Like I
17:07
Speaker 2: was like, the vomiting is one thing, but like something
17:09
Speaker 2: else is going on, And they immediately snapped into action,
17:13
Speaker 2: and nobody made me feel like I was ridiculous, or
17:17
Speaker 2: that I was a new mom and I was exhausted
17:19
Speaker 2: or like I was anxious. They were like, okay, like
17:23
Speaker 2: we believe you. We're gonna we're gonna bring you back,
17:26
Speaker 2: like we're gonna figure out what's going on and it's
17:28
Speaker 2: gonna be fine. And they had also agreed they thought
17:30
Speaker 2: it was pieworks to naosis, so they were like, we
17:32
Speaker 2: kind of need to handle this quickly. We need to
17:34
Speaker 2: get an ultrasound on him and make sure there's not
17:36
Speaker 2: a blockage or a twist, and once we can confirm
17:39
Speaker 2: that's not what's going on, we'll like start to work
17:42
Speaker 2: our way out. Had an ultrasound, no piloworks tonosis, and
17:48
Speaker 2: they were like that's a great sign. And I was
17:50
Speaker 2: like okay, And right after the ultrasound happened, I like
17:56
Speaker 2: picked him up and he wanted to ner, so I
17:59
Speaker 2: was like at this point, they were still just like
18:01
Speaker 2: whatever he wants to do, why he's here, let's if
18:03
Speaker 2: he wants to nurse like, let's feed him. He wasn't
18:05
Speaker 2: on any protocols yet. So I had fed him and
18:08
Speaker 2: he nursed really well, and I like remember kind of
18:10
Speaker 2: having this spaw in the back of my mind being like,
18:12
Speaker 2: oh my God, like is he like I brought him
18:14
Speaker 2: here all this stuff and he's like gonna end up
18:17
Speaker 2: being completely fine? And then I picked him up the
18:20
Speaker 2: bourbon and he vomited brake green and this is the
18:25
Speaker 2: only instance that he's ever had Billius vomite. But like,
18:29
Speaker 2: and I was alone in the ultra summom waiting for
18:32
Speaker 2: like an our nurse to bring us back down to
18:34
Speaker 2: the ED, so I like immediately took my phone out.
18:36
Speaker 2: I took a ton of pictures of it. I like
18:38
Speaker 2: a video of it because I was like, this is
18:41
Speaker 2: like it looked like he threw up a highlighter. It
18:43
Speaker 2: was the brightest color I've ever seen and it was
18:45
Speaker 2: all over the side of me. And our nurse walked
18:48
Speaker 2: in and I will never forget her face when she saw.
18:50
Speaker 2: She was like, did he do that on your shoulder?
18:53
Speaker 2: And I was like yes, and she was like, Okay,
18:59
Speaker 2: We're going back down to the EDA. Then they basically
19:02
Speaker 2: called everyone in. We saw like neuro gastro like every
19:08
Speaker 2: person was in our room, and our surgeon, who is
19:12
Speaker 2: our surgeon now, was the first person he came down.
19:15
Speaker 2: And so many people that day have been talking to
19:17
Speaker 2: me about They were trying to get family history and
19:19
Speaker 2: all these things, and he had was the first time
19:21
Speaker 2: I ever heard the word hirshpring disease, because he was like,
19:23
Speaker 2: does anyone in your family have hirshprnks disease? And I
19:26
Speaker 2: was like, no, that's like a crazy word, like I
19:29
Speaker 2: would know about that, And I was like no, And
19:32
Speaker 2: I remember just like very quickly brushing it off because
19:35
Speaker 2: I was like, I don't even know what that is.
19:38
Speaker 2: At that point, I had no idea. He hadn't explained
19:40
Speaker 2: anything of it to me. But luckily he was like,
19:44
Speaker 2: we're gonna there's a couple of things we can do
19:46
Speaker 2: here in the ed to kind of test to see
19:48
Speaker 2: if he has some symptoms of it, because they were like,
19:51
Speaker 2: he does a little bit like the billiest vomiting and
19:53
Speaker 2: like the kind of lack of apposite was the first thing.
19:56
Speaker 2: But they were like, you he had maconium in the water.
19:58
Speaker 2: He passed the maconium like way before the twenty four
20:00
Speaker 2: hour mark, like we really don't think This leads into
20:05
Speaker 2: our story a lot of like the first like month
20:07
Speaker 2: of his life of people just being like, we really
20:09
Speaker 2: don't think he has it, but was like what I
20:13
Speaker 2: heard all the time. So they were like, we can
20:16
Speaker 2: do a couple of things, like we're gonna irrigate him.
20:18
Speaker 2: That was the first time I also heard that where
20:20
Speaker 2: they were like we're gonna put the Catherine. We're going
20:22
Speaker 2: to see if any like they were like an explosion
20:25
Speaker 2: of stool would be concerning. And I was like, Okay,
20:29
Speaker 2: they did it. That's adn'tap. And I was like, cool,
20:31
Speaker 2: we're clear, like cross this off the list for me.
20:34
Speaker 2: And then they irrigated him in there like down in
20:37
Speaker 2: the emergency room because they had already had the caf
20:39
Speaker 2: and then they were like it can't hurt to do it,
20:41
Speaker 2: like we'll just do it. And this is one of
20:43
Speaker 2: the things that I believe like truly saved him because
20:47
Speaker 2: he was in the beginning stages of like going septic
20:51
Speaker 2: at this point, but we we didn't know that we
20:54
Speaker 2: hadn't gotten woodwork done back on't him yet, Like they
20:58
Speaker 2: hadn't even put id's in him or anything yet. Like
21:00
Speaker 2: this was like because he was still alert and fine,
21:02
Speaker 2: but like I truly believe that like if they didn't
21:05
Speaker 2: do that, it like at least cleared him out and
21:07
Speaker 2: got in some of like kept tim essentially from getting entrocloitis,
21:12
Speaker 2: because he was like on the verge of starting to
21:14
Speaker 2: get it. I don't know where can happens. But thankfully
21:19
Speaker 2: they did that, and they were like, you're clear, like
21:23
Speaker 2: cause we see general like this was our general surgeon,
21:25
Speaker 2: and so they were like, g I is gonna come in.
21:28
Speaker 2: We're going to do all these other tasts. Long story short,
21:31
Speaker 2: in this process, he got like an upper GI. He
21:34
Speaker 2: got all everything that they could do. He had two
21:36
Speaker 2: spinal taps, they did a brain amri, they did like everything,
21:40
Speaker 2: and by the end of that day they were like,
21:41
Speaker 2: you don't know what's wrong with him, but something is wrong.
21:45
Speaker 2: We're going to move him to the nick You he's
21:48
Speaker 2: going to be there for at least twenty four hours.
21:51
Speaker 2: We're going to get you out of the emergency room.
21:52
Speaker 2: We're going to the neck yo. We go to the
21:54
Speaker 2: nick you. We're there for twenty four hours. And then
22:00
Speaker 2: they come up and they're like, oh, we're gonna do
22:02
Speaker 2: I see our journal search and begain and he's like, Hi,
22:04
Speaker 2: it's me again. We can do this other test to
22:09
Speaker 2: like really try to roll out her sprums and I
22:13
Speaker 2: was like, didn't we do that already? Like what are
22:15
Speaker 2: you talking about? Stir And at this point, like Sterling
22:18
Speaker 2: was five days old, he had two in an ivy
22:22
Speaker 2: in each hand, he had an ivy in his foot.
22:26
Speaker 2: Like it was a very scary situation because everyone in
22:29
Speaker 2: the hospital that we spoke to Joss kept being like,
22:32
Speaker 2: we don't know what's wrong with him, but like clearly
22:35
Speaker 2: something is and every test that they were doing was
22:38
Speaker 2: coming back completely clear, Like his final tap was clear.
22:41
Speaker 2: Like they at one point maybe thought he had like
22:44
Speaker 2: a UTI and like his body was like kind of
22:46
Speaker 2: like starting to battle that and that's kind of where
22:49
Speaker 2: like the sepsist comes back in because they were like,
22:51
Speaker 2: he is showing some odd like symptoms that could be septist,
22:55
Speaker 2: but like his blood work looks great and like he
22:58
Speaker 2: did they were doing X rays every day and they
23:00
Speaker 2: were like, he does have some thing that like something
23:05
Speaker 2: that looks like it could be like constipation at that point,
23:09
Speaker 2: but they were also like he's on antibiotics, he's on
23:12
Speaker 2: so many medications because the protocol when you get edited
23:15
Speaker 2: in the nick you was like you treat your sepsis
23:17
Speaker 2: even if you don't know it's there. So as soon
23:21
Speaker 2: as he got in the nick you, they started treating
23:22
Speaker 2: him percepsis, which also is like what I think cat
23:25
Speaker 2: him alive and from getting entercolitis because he was on
23:28
Speaker 2: every antibiotic they could find, because they were like, it's
23:31
Speaker 2: better to just give the baby everything than the possible
23:36
Speaker 2: side effects of not of leading into labs get back
23:39
Speaker 2: because he was so little, and I was like, whatever
23:41
Speaker 2: you guys need to do, do it. And again I
23:44
Speaker 2: will say the NICKI nurses, the NIKI doctors, everyone of
23:47
Speaker 2: the special lady that we spoke to was amazing and
23:51
Speaker 2: took their time of explaining things to me. And because
23:55
Speaker 2: I was five day's postpartum, completely delirious, I was alone
23:58
Speaker 2: this entire time because my husban was with our toddler,
24:00
Speaker 2: who had never been away from me, so like I
24:03
Speaker 2: was doing all of this completely by myself. And I'm
24:07
Speaker 2: very lucky that I come from like a slight medical background.
24:09
Speaker 2: I nannyed for doctors and nurses almost exclusively. Like my
24:14
Speaker 2: whole career of doing it, so I have a little
24:15
Speaker 2: bit more knowledge of kind of like at least the
24:19
Speaker 2: way that a hospital system runs, so like I know
24:22
Speaker 2: generally when rounds are like how to get into touch
24:25
Speaker 2: with the doctor if I need them, like kind of
24:26
Speaker 2: the protocols to go through, which when you're dealing with
24:29
Speaker 2: something like this and you're tired and exhausting, like not
24:32
Speaker 2: having to try to like navigate, that was super helpful.
24:35
Speaker 2: And also having people that I could like text and
24:37
Speaker 2: be like X, Y and Z is happening, Like what
24:40
Speaker 2: do you think? Like do you think that I need
24:43
Speaker 2: to say more about this? Or do I not need
24:44
Speaker 2: to say more about it? And that was extremely helpful
24:47
Speaker 2: because I know I heard parents like stories where they
24:51
Speaker 2: just it's very hard to be thrust into that like
24:54
Speaker 2: very intense medical environment when you have no concept of
24:59
Speaker 2: what going on and you're just trying to like you're
25:02
Speaker 2: watching all this stuff happen to your tiny little baby
25:06
Speaker 2: and you're like what, like what are you doing to them?
25:09
Speaker 2: And like, luckily like I didn't have that feeling. I
25:11
Speaker 2: was like, whatever you guys feel we need to do,
25:14
Speaker 2: like we're gonna do it, and they were always like
25:17
Speaker 2: on my side, which I feel so fortunate to have
25:21
Speaker 2: had that experience, and I'm forever grateful for them because
25:24
Speaker 2: it really kind of changed the church directory of like
25:26
Speaker 2: stern story. But yeah, our general Startey came back up
25:30
Speaker 2: and he was like, oh, like we're gonna do a
25:33
Speaker 2: very enema because it'll be able, like we're gonna put
25:36
Speaker 2: contrast in, We're gonna be able to see if there's
25:38
Speaker 2: like narrowing or anything. I was like, okay, like I
25:43
Speaker 2: thought we were done with this, so we we do
25:45
Speaker 2: the enema. It comes back and he had like a
25:49
Speaker 2: slight narrowing that they were like, because of this slight narrowing,
25:54
Speaker 2: like we can't again fully rule it out, but like
25:59
Speaker 2: he pushed all all of the contrasts out himself, and
26:01
Speaker 2: they were like that that in itself is a great sign.
26:04
Speaker 2: Like again we heard he probably doesn't have this, but
26:07
Speaker 2: we can't tell you with like one hundred percent certainty.
26:11
Speaker 2: But everyone else was kind of like above our general
26:13
Speaker 2: surgeon at that point, like we were seeing like neurology
26:16
Speaker 2: and all of them, and they were like, this is
26:18
Speaker 2: the least of our concerns because he still wasn't improving
26:22
Speaker 2: at this point, Like he kind of just like plateaued.
26:26
Speaker 2: He's still he was on TPN, so like they didn't
26:28
Speaker 2: want me feeding in because they wanted him on like
26:30
Speaker 2: bowell rest because of like the antibiotics he was on there,
26:34
Speaker 2: Like it's just better for his system if we're not
26:37
Speaker 2: introducing any new variables, so like he couldn't eat, and
26:42
Speaker 2: that also kind of like was like they were like,
26:45
Speaker 2: we don't really care that he's not stooling a lot
26:48
Speaker 2: because he's on TPN and there's ED, he's on all
26:51
Speaker 2: these antibiotics, so it was kind of like they were like,
26:53
Speaker 2: this is not something that we need to worry about.
26:57
Speaker 2: He was in the nick you for like thirty six
26:59
Speaker 2: hours and then they or like, we can move you out.
27:01
Speaker 2: He's like too healthy to be here with these babies,
27:04
Speaker 2: but like he's nowhere close to being ready to go home.
27:08
Speaker 2: So they moved us to a different part of the
27:10
Speaker 2: hospital and we were there for maybe are on four days,
27:15
Speaker 2: I think, and they basically called him like a feeder
27:19
Speaker 2: and a brower. They just were like, we're gonna slowly
27:21
Speaker 2: start adding food back into his diet and see if
27:25
Speaker 2: he can tolerate it. They put him on a up
27:26
Speaker 2: pretty intense reflex medicine and they're like, maybe that is
27:29
Speaker 2: what it is. And because still everything was coming back normally,
27:34
Speaker 2: so like he finished the rounds of the antibiotics and
27:36
Speaker 2: they were like, okay, we can take him off of that.
27:39
Speaker 2: And then when he was still in the antibiotics, they're like,
27:40
Speaker 2: let's slowly like introduce some like food back end because
27:45
Speaker 2: we're like, lucky he never had to have like a
27:47
Speaker 2: feeding tube or anything because he was a decent size
27:50
Speaker 2: when he was born that when he was on the TPN,
27:52
Speaker 2: he wasn't losing any weight. So they were like, let's
27:55
Speaker 2: just leave him be. And then we first started to
27:59
Speaker 2: introduce a bottle because it was like easier to control
28:01
Speaker 2: the flow and tell how much he was getting. He
28:04
Speaker 2: was still it was still brast small because I was
28:06
Speaker 2: pumping this whole time, and he did great with it,
28:09
Speaker 2: didn't spend up. They were like, great, let's do another
28:11
Speaker 2: feeding and then they we kind of just like slowly
28:13
Speaker 2: leaned him off of everything and he started to look great,
28:17
Speaker 2: and they were like, everything has come back clear, Everything
28:21
Speaker 2: continues to come back clear. His X rays look great,
28:24
Speaker 2: everything looks great. Like the reflux medicine seems to be
28:27
Speaker 2: helping with the vomiting, He had no more instances of
28:30
Speaker 2: the billious vomiting, the green vomit, and he was like
28:35
Speaker 2: eleven days old, twelve days old at this point. And
28:39
Speaker 2: one morning they came in and they were like, how
28:40
Speaker 2: do you guys feel about going home today? And I
28:43
Speaker 2: was like what, And they were like, he's been off
28:47
Speaker 2: the TPN for like two days at this point, he's
28:51
Speaker 2: off the antibiotics, he's never had a fever. All of
28:54
Speaker 2: his bloodwork came back, his plate looks so green, and
28:57
Speaker 2: he sells it like everything was perfect. And I was like,
29:00
Speaker 2: but you guys didn't figure out like what it was,
29:04
Speaker 2: like why all these odd things happened. And they were like,
29:07
Speaker 2: we can't find a correlation to it. And I spoke
29:11
Speaker 2: to all the departments and they were like, sometimes babies
29:15
Speaker 2: just freak out when they're born and their bodies kind
29:18
Speaker 2: of start to shut down and they just need like
29:22
Speaker 2: this jumpstart. But like you feel like we've done everything
29:24
Speaker 2: that we can do, Like we're gonna send to you home,
29:26
Speaker 2: like obviously if he starts the art vomiting again, or
29:29
Speaker 2: he gets a fever, any of those things, like this
29:32
Speaker 2: is there's kind of nothing more that we can do
29:37
Speaker 2: for you here, and he's doing really well. He was
29:38
Speaker 2: getting wake, he was wake, he was nursing like he
29:41
Speaker 2: had been nursing like exclusively again at that point, and
29:45
Speaker 2: I was like okay. And at that point, like I
29:48
Speaker 2: had been at the hospital the entirety of the time
29:50
Speaker 2: with him, and I was at the point where I
29:52
Speaker 2: was like I need to like if you're saying we
29:55
Speaker 2: can go home, like we need I need to go home,
29:57
Speaker 2: like I need to get out of here and our
30:00
Speaker 2: wonderful general surgeon, like because everyone rounds with you before
30:05
Speaker 2: we leave. Like he popped his head back in again
30:07
Speaker 2: and he was like, I want to do one more thing,
30:10
Speaker 2: and I was like, you're joking, and because he was like,
30:13
Speaker 2: I want to do a biopsy and I was like no,
30:17
Speaker 2: We just like talked about getting discharge papers, like you're
30:22
Speaker 2: not doing that, and he was like, it's a bedside biopsy.
30:25
Speaker 2: He was like, I can do it in five minutes
30:27
Speaker 2: and it's not gonna impact you going home today because
30:30
Speaker 2: we had to send it out to pathology if anything,
30:33
Speaker 2: You're just gonna have to come back to my office
30:35
Speaker 2: in like a week. And I said no again. I
30:39
Speaker 2: was like, no, you told me all of this was
30:41
Speaker 2: not an issue. You're telling me every time I see
30:44
Speaker 2: if it he doesn't have any of these like symptoms
30:47
Speaker 2: because he's sooling. You passed with conyambola. And at this
30:50
Speaker 2: point still I didn't even know what the biopsy was for.
30:53
Speaker 2: And then he said, Hirschearharm's disease again and I was like,
30:57
Speaker 2: you're kidding me that we're doing this again, and he
31:01
Speaker 2: was like, can I please do it? And I was like, fine, fine,
31:05
Speaker 2: get it done. We're gonna do it. And he was like, okay,
31:08
Speaker 2: which is the greatest decision I've ever made in my life.
31:10
Speaker 2: Thank god I did it, and he did the biossea.
31:13
Speaker 2: It was really quick, and then when he left, we
31:15
Speaker 2: were waiting for I was waiting for our discharge papers.
31:18
Speaker 2: Was the first time that I like actually like googled
31:21
Speaker 2: Hirschberg's disease because so many other things were going on
31:24
Speaker 2: and I was very focused on not like going down
31:29
Speaker 2: a rabbit hole of every type thing that somebody told me.
31:32
Speaker 2: I didn't want to have like too much information. And
31:38
Speaker 2: I googled it and chop is like one of the
31:41
Speaker 2: main hospitals here that does it, and like they have
31:45
Speaker 2: like little video testimonies of like the specialty kind of departments,
31:49
Speaker 2: and so I watched it and the child that they
31:52
Speaker 2: were talking about and his parents and everything. I was like,
31:55
Speaker 2: he had every one of these symptoms besides the maconium passing.
31:59
Speaker 2: And I was like what. And I remember calling my
32:04
Speaker 2: husband being like, I think he has hirsch Farms disease
32:06
Speaker 2: and he was like, no, he doesn't. And I'm like,
32:09
Speaker 2: I really think that he does. Like why did we
32:11
Speaker 2: do all this extra stuff and this could have been
32:13
Speaker 2: what it is? And I was like, I want to
32:16
Speaker 2: talk to the general sergeant again. And he came back
32:18
Speaker 2: up and he was like, didn't do this first because
32:20
Speaker 2: of so many other outlying things that were going on
32:22
Speaker 2: in because he doesn't present in a typical case. I
32:28
Speaker 2: was like, okay, Like what do we need to do.
32:30
Speaker 2: And at this point he was still strolling on his own,
32:32
Speaker 2: so like he didn't send us home with sailing or cafeters,
32:37
Speaker 2: like we weren't irrigating him at all. And we went
32:40
Speaker 2: home and he was like, the pathology is gonna come back.
32:42
Speaker 2: I'm gonna call you, You're gonna come in the office.
32:43
Speaker 2: We're gonna talk about it. Here you go. I was
32:47
Speaker 2: like all right. We went home. We were home for
32:48
Speaker 2: a week. Shilling did great, no fever, no other symptoms.
32:52
Speaker 2: He were like, Okay, we're out of the woods. This
32:53
Speaker 2: is over. This was like a really terrible chapter and
32:56
Speaker 2: having our baby get and they're like, okay, can you
33:01
Speaker 2: bend your pathologies in? And I'm like can you just
33:05
Speaker 2: why is it not in my portal? And I'm like, oh,
33:08
Speaker 2: because something is in it. And at this point, like
33:10
Speaker 2: I had kind of like been doing a little bit
33:12
Speaker 2: more research, being like, okay, ganglion cells, what are those?
33:16
Speaker 2: What's the deal with this? He's still not having any
33:19
Speaker 2: symptoms of it, so maybe I don't know. And we
33:24
Speaker 2: go in we're waiting in the office. We're waiting in
33:26
Speaker 2: the office and here like the nurses can't give you
33:28
Speaker 2: test results. And our surgeon ended up getting like called
33:31
Speaker 2: in for a surgery. So they were like just leave,
33:34
Speaker 2: like we don't know how long it's going to be.
33:36
Speaker 2: And I was like, are you serious? So we left
33:39
Speaker 2: and I called our pediatrician because she knew we were
33:41
Speaker 2: waiting on these results, and they like link stuff here
33:43
Speaker 2: and she's like, let me see if I can like
33:45
Speaker 2: go in and see the results. And she goes in
33:48
Speaker 2: and she was like, he has her shworms disease, like
33:52
Speaker 2: there are no ganglion cells present, and I was like,
33:55
Speaker 2: what are you talking about. So this starts our actual
34:01
Speaker 2: journey of like him getting his diagnosis, and we ended
34:05
Speaker 2: up going in the next day. They showed us how
34:07
Speaker 2: to irrigate in the office. We were really lucky that
34:11
Speaker 2: because he was irrigated in the hospital, he was on
34:14
Speaker 2: all the antibiotics, he didn't have like any stretching. We
34:17
Speaker 2: did other x rays, so like we were able to
34:20
Speaker 2: avoid getting like a stoma or an owest to me
34:22
Speaker 2: because he had been stooling on his own and there
34:24
Speaker 2: was no kind of like damage that we needed to correct.
34:28
Speaker 2: And he was like, I don't like to do pull
34:30
Speaker 2: throughs on babies. I don't think that it works well
34:34
Speaker 2: for them unless we're in a dangerous situation, Like we're
34:38
Speaker 2: kind of kind of just waited out. If you guys
34:39
Speaker 2: are comfortable irrigating him at home, we will just do
34:42
Speaker 2: that and then we'll do his pull through when he's
34:45
Speaker 2: three months old. And then he was like, we want
34:47
Speaker 2: to do a full suction biopsy to see if we
34:50
Speaker 2: can see how far it goes up. And he was like,
34:54
Speaker 2: we can do that when he's a month old, because
34:56
Speaker 2: he has to be put under like an a seizure
34:58
Speaker 2: for that, But then we could do it a an
35:00
Speaker 2: outpatient procedure so that like you guys can go home
35:02
Speaker 2: not day, And like I said, we're local, so I
35:05
Speaker 2: was like, whatever is going to keep us not impatient?
35:09
Speaker 2: So yeah, we went in. We did the suction biopsy
35:12
Speaker 2: that also came back because they only do it and
35:14
Speaker 2: like they can only get like a certain amount to
35:16
Speaker 2: my understanding, when they're under the anesthesia, but like he
35:20
Speaker 2: was past the threshold of it being like ultra short
35:23
Speaker 2: segment at that point because he had Also our sergeant
35:25
Speaker 2: also said, like if I see them during this suction biopsy,
35:28
Speaker 2: then like we might have to pivot our plan because
35:30
Speaker 2: like a pull through might not actually be the best
35:34
Speaker 2: thing to do for him if he has like ultra
35:37
Speaker 2: like short circuit segment and because he has been stooling
35:40
Speaker 2: on his own up until this point, like it might
35:42
Speaker 2: not be the case, which is why we ended up
35:45
Speaker 2: doing the suction biopsy. So yeah, it came back and
35:49
Speaker 2: he was like, no, like I really think a poll
35:51
Speaker 2: through is the best thing for him. Let's get this
35:54
Speaker 2: on the calendar whenever. And our team at CHOP has
35:57
Speaker 2: always been very like they lead by like what I
36:01
Speaker 2: kind of want to do. They've always been like, you
36:03
Speaker 2: are the one home with him, caring for him. You
36:05
Speaker 2: know him better than we do. We can give you
36:08
Speaker 2: like our clinical diagnosis of like you follow X, Y
36:11
Speaker 2: and Z, but like we're always going to de halt
36:14
Speaker 2: to like what you think is the best thing to
36:16
Speaker 2: do for him. So like, if you don't think that
36:18
Speaker 2: he's ready to get it done at three months, we'll wait.
36:22
Speaker 2: And we're super fortunate that like outside of that, strowing
36:25
Speaker 2: has been extremely healthy. He's a very large child, so
36:29
Speaker 2: like we've never had any issues with like weight gain
36:31
Speaker 2: or anything like that that I know some families can
36:33
Speaker 2: have at the beginning where they're waiting a certain amount
36:35
Speaker 2: of time to like make sure they're strong enough to
36:37
Speaker 2: go into this potentially very long surgery depending on what
36:41
Speaker 2: happens when you get in there. So he had his
36:44
Speaker 2: pull through when he was three months old. It was
36:46
Speaker 2: super straightforward. I was prepared for like a very very
36:49
Speaker 2: long day there. He was done. I think it was
36:53
Speaker 2: like from when they took him back to the o
36:55
Speaker 2: R until like they spoke to me like when they
36:57
Speaker 2: came back out four hours, it was so fast comparatively
37:01
Speaker 2: to like what I was thinking. And they have our
37:05
Speaker 2: surgeon works with a specific pathologists for his first participations
37:09
Speaker 2: that he like very much trusts because he was like,
37:12
Speaker 2: it's not the actual surgery that takes a long time,
37:14
Speaker 2: it's like the reading of the pathology because they're doing
37:16
Speaker 2: it like live in the operating room. So he was like,
37:20
Speaker 2: that's what it's gonna be, the bulk of Like that's
37:24
Speaker 2: what we're reading for until we get the call of
37:26
Speaker 2: like where it was. And he had explained to me
37:28
Speaker 2: too that he likes to take like a timing bit
37:30
Speaker 2: more out for the transition zone. And at the time,
37:33
Speaker 2: I also like didn't know in half of this. Man.
37:35
Speaker 2: I was just like, Okay, just do it. It's gonna
37:39
Speaker 2: be fine. I had a bea like a pretty basic knowledge,
37:41
Speaker 2: like I said, like I when we were speaking before,
37:44
Speaker 2: I was like in a lot of the groups, but
37:45
Speaker 2: I wasn't actively in them because it was very overwhelming
37:49
Speaker 2: for me at the time. So, Yeah, his surgery went great,
37:53
Speaker 2: he came out, he did great off the anesthesia. We
37:56
Speaker 2: had a little bit of like a tricky spot posts
37:59
Speaker 2: off with navigating, like his reflux when his stomach gets empty.
38:04
Speaker 2: Even still now at two years old, he has a
38:06
Speaker 2: lot of like reflux like the acid. So the being
38:10
Speaker 2: on the TPN and not being able to eat was
38:13
Speaker 2: very difficult for him in the first night, Like he
38:15
Speaker 2: was in a significant amount of pain from the reflux,
38:19
Speaker 2: not from the surgery. So much like our versus were great,
38:25
Speaker 2: they were trying to keep him comfortable, but like I
38:27
Speaker 2: had really kind of like heavily advocated at that point,
38:31
Speaker 2: being like he's not going to be comfortable until he
38:34
Speaker 2: starts to get something into his stomach, and I know
38:36
Speaker 2: we're waiting for like him to pass some gas or
38:39
Speaker 2: to have some stool, but like he was because breast
38:43
Speaker 2: milk is also like very utri intense, a lot of it.
38:45
Speaker 2: I've rone this like from our story absorbs, so like
38:48
Speaker 2: it doesn't create a lot of waste sometimes like depending
38:50
Speaker 2: on how the baby breaks it down. So like I was, like,
38:54
Speaker 2: there's not gonna be enough of like a push or
38:56
Speaker 2: a sensation if he's been completely off food for a
39:00
Speaker 2: significant amount of time, Like how is he supposed to
39:02
Speaker 2: get things moving and wheat first bows to wake up
39:05
Speaker 2: when there's nothing moving through there. And they were like, okay,
39:11
Speaker 2: he had like kind of parted a little bit at
39:13
Speaker 2: this point too, so they were like, let's give him
39:15
Speaker 2: like it ounce and see how you guys had the bombits.
39:17
Speaker 2: We'll go back. He did great. Like an hour after that,
39:21
Speaker 2: he pooped, which was like the first poop post pull through,
39:24
Speaker 2: which was amazing. We were like, he's doing great, and
39:28
Speaker 2: once he pooped, they were like, let's just let him
39:30
Speaker 2: do what he wants to do and see how he's
39:32
Speaker 2: gonna go. And he snapped back to it. So yeah,
39:36
Speaker 2: we were We were only in the hospital for three
39:39
Speaker 2: full days, that's counting his surgery day. He had nine
39:42
Speaker 2: centimeters removed, which I know is not a ton comparatively
39:45
Speaker 2: to everyone else had a small amount. It was a
39:48
Speaker 2: decent most of his work. Then they said, but yeah,
39:52
Speaker 2: he did amazing and so thankful for that. And we
39:56
Speaker 2: went out of there kryd of fingers crossed, being like,
39:59
Speaker 2: this is gonna be the last of it, and it wasn't, unfortunately,
40:06
Speaker 2: but we kind of just fell into the the rabbit hole,
40:11
Speaker 2: like the hamster wheel I like to call it, of
40:13
Speaker 2: like what seems to happen to some kids is that
40:17
Speaker 2: we had a toddler at home. He got sick with
40:20
Speaker 2: a respiratory thing. I think he was like five weeks
40:24
Speaker 2: postop at that point. Nothing crazy, but it completely just
40:31
Speaker 2: slowed his bows down to the point where like he
40:33
Speaker 2: stopped stooling on his own. We called her team. They
40:37
Speaker 2: were like, hey, this is we talked about this. This
40:41
Speaker 2: is pretty common with illness, especially with like little ones
40:44
Speaker 2: like this, let's ride it out. We started coming up
40:48
Speaker 2: with a plan. They were like, if he looks wonky
40:51
Speaker 2: at all, just irrigate him. And I've always like aired
40:54
Speaker 2: on the caution of irrigatting cooks pre like pull through.
40:57
Speaker 2: We were irrigetting him in the morning and at night,
41:00
Speaker 2: and he was little then, so it was like pretty easy.
41:03
Speaker 2: He's always tolerated it very well. It's been a huge
41:06
Speaker 2: just part of his life. So we're super corsh it
41:09
Speaker 2: that he We're not wrestling an alligator. And we've always
41:13
Speaker 2: been very like as soon as I've been out his diagnosis,
41:16
Speaker 2: I've always been like very heavily consent based with him
41:18
Speaker 2: because it can be so invasive in his body, and
41:22
Speaker 2: our team is very consent based off so it's always
41:25
Speaker 2: we've always been like when he was even when he
41:27
Speaker 2: was a newborn, we were talking him through being like
41:29
Speaker 2: this is what we're gonna do, Like this is the
41:31
Speaker 2: catheter it's going in, Like we're putting the saline, we're
41:34
Speaker 2: pulling it out. Like we've just talked everything through with him.
41:39
Speaker 2: And our team has also done that at Chop as well.
41:42
Speaker 2: They've always like explained to him what they're doing. They
41:45
Speaker 2: always ask like being like, we're gonna look at like
41:48
Speaker 2: your bottom now, hello, this is my cath Yes, she
41:57
Speaker 2: likes being cluded, is uh yeah, So we're like from
42:00
Speaker 2: the beginning when I realize how all encompassing this disease
42:04
Speaker 2: can be, I was like, me, I really want to
42:06
Speaker 2: make sure that like we are setting him up for
42:09
Speaker 2: like as much pop like of a positive experience with
42:12
Speaker 2: this as we can. And it's been something that like
42:15
Speaker 2: I'm very proud of us at our team were doing
42:17
Speaker 2: because like I said, now at two, when we have
42:19
Speaker 2: to irrigate him, it's really not that big of a deal,
42:23
Speaker 2: like unless he has a fissier or something like he's
42:25
Speaker 2: not comfortable. He knows when we're doing it. We tell him,
42:28
Speaker 2: I mean, he will express that he doesn't like it,
42:30
Speaker 2: and he doesn't want it, but he also knows like
42:35
Speaker 2: we have to do it to keep you healthy, and
42:37
Speaker 2: if we don't do like we're doing it, and like
42:39
Speaker 2: my older daughter too, like it's just become so much
42:42
Speaker 2: a part of our life that doing something really hard
42:46
Speaker 2: to him is like unfortunately kind of part of our
42:52
Speaker 2: hirsh Worn's journey. But he has done remarkably well with
42:58
Speaker 2: the irrigations because like he was like, yeah, like I said,
43:01
Speaker 2: six weeks post stop around when it started and we
43:04
Speaker 2: tried to do the let's add some cring juice to there,
43:08
Speaker 2: because I was like, let's not drop the boat too much.
43:11
Speaker 2: I don't want to immediately throw him on a laxative
43:13
Speaker 2: when he hadn't even started solid foods yet. Either. That
43:17
Speaker 2: was the big thing where our surgeon was like, you
43:20
Speaker 2: guys are irrigating him a decent amount, because I was like,
43:23
Speaker 2: I'm trying to get not have entrochoolitis ever, Like ever,
43:27
Speaker 2: I don't want it. It's so scary any time that
43:31
Speaker 2: he had a fever or weird, especially in the beginning days.
43:34
Speaker 2: I was like, it's just so much easier to irrigate him,
43:37
Speaker 2: make sure everything is flushed out of their Dad is
43:39
Speaker 2: going to be the best thing that we can do
43:40
Speaker 2: here at home. We're going to keep doing that. So,
43:44
Speaker 2: like I've always aired very much on the air of
43:47
Speaker 2: caution with the irrigations, Like like I said, he's weird,
43:50
Speaker 2: we flush him out, And I think that that worked
43:54
Speaker 2: really well for us, because he did not get introcloitis
43:58
Speaker 2: all in his first year and he was set decent
44:00
Speaker 2: amount just with respiratory stuff. And yeah, we tried the
44:04
Speaker 2: broom juice, did nothing, and then he started solid who
44:08
Speaker 2: we were we were gonna wait till we started solid
44:10
Speaker 2: food at like six months old, because our surgeon was like,
44:12
Speaker 2: let's try to get some bulkier stuff in him and
44:14
Speaker 2: see if that jump starts everything. It did not, unfortunately,
44:19
Speaker 2: So we started SENNA when he was like around seven
44:21
Speaker 2: months old. And this is where we got into like
44:26
Speaker 2: the rash situation. We were managing it really well and
44:31
Speaker 2: then it just blew up in our face, like and
44:36
Speaker 2: it was a very tricky situation of trying since he
44:40
Speaker 2: was little at this point too, so it was like
44:41
Speaker 2: we were kind of limited on like what lax if
44:44
Speaker 2: we could give him that would come in like a
44:46
Speaker 2: form that he would take. And the sena was working
44:50
Speaker 2: like he would have. We would give it before bed
44:52
Speaker 2: and then he would have like one really big stool
44:54
Speaker 2: in the morning and it was like it was working,
44:57
Speaker 2: but it was so acidic that even though we were
45:00
Speaker 2: getting it off of his skin, it was just burning
45:03
Speaker 2: him like so badly, to the point where like we
45:07
Speaker 2: were almost embedded to wound care because we couldn't keep
45:11
Speaker 2: it under control, we couldn't keep it dry, and then
45:13
Speaker 2: he was like starting at constipations in them, so he
45:16
Speaker 2: was like smearing a lot, and we would just change
45:18
Speaker 2: him and he would immediately go and it was like
45:20
Speaker 2: we couldn't go anywhere because he was into so much
45:23
Speaker 2: pain and like his quality of life had gone down.
45:26
Speaker 2: This was the first time that like we'd really seen
45:28
Speaker 2: like the quality of his life go down. And I
45:31
Speaker 2: was like, we can't do this anymore. So we called
45:34
Speaker 2: our team and they were like, stop doing just stop
45:36
Speaker 2: doing it, move back to the irrigations. Let's let us
45:38
Speaker 2: skin heal. And what I ended up having was like
45:42
Speaker 2: he had like a fungo rash also on top of
45:44
Speaker 2: like the burns, so like asked the like skin was
45:47
Speaker 2: healing from that because it was damp all the time.
45:50
Speaker 2: It was like a fungo rash, so like we just
45:52
Speaker 2: used like an anti fungal, like it was like foot cream,
45:55
Speaker 2: and it cleared everything up so quickly, and even now
46:00
Speaker 2: when he gets a little weird, I'm like, oh, we
46:02
Speaker 2: got to put some foot cream on his butt because
46:04
Speaker 2: it's probably because it's so damp. So yeah, we stopped
46:07
Speaker 2: all the LA accidents at that point. We just went
46:09
Speaker 2: back to irrigating. Our protocol was like, we're gonna irrigate
46:12
Speaker 2: him every three days if he doesn't have like a
46:14
Speaker 2: significant bowel movement that day, and that was what was
46:20
Speaker 2: working for us. If he seemed off, we would do more.
46:23
Speaker 2: He was stooling on his own, but not a lot.
46:26
Speaker 2: This is really kind of when he like stopped and
46:28
Speaker 2: it was like, Okay, his body is becoming reliant on
46:32
Speaker 2: these irrigations to empty him out because it's easier. Those
46:35
Speaker 2: muscles are not working the way that they need to
46:37
Speaker 2: be working, like they're overly tight. We were doing dilations
46:41
Speaker 2: for a little bit, but it wasn't doing anything to help,
46:45
Speaker 2: and our surgeon was like, there's a bunch of new
46:48
Speaker 2: research that says that maybe you shouldn't even be doing
46:50
Speaker 2: these in general. So he didn't have any like string
46:53
Speaker 2: shres or scar tissues. So it was like, in your
46:55
Speaker 2: guys' case, it doesn't really make sense for you to
46:57
Speaker 2: do them. So if you want to go ahead, if
46:59
Speaker 2: you don't, don't do it. So we stopped and then
47:04
Speaker 2: he turned one. We celebrated. He stopped nursing, which was
47:07
Speaker 2: a big thing because I was like nervous about switching
47:10
Speaker 2: him just fully over to food as because like nursing
47:14
Speaker 2: was always extra calories, extra hydration, and it was always
47:17
Speaker 2: kind of like our fail safe. I was always like,
47:19
Speaker 2: he's getting what he needs from the breast milk. But
47:23
Speaker 2: I was uninterested in nursing past years. So I was like,
47:25
Speaker 2: we're done with this. You're gonna be a grown up
47:28
Speaker 2: boy now. Yeah. So we turned one in June last year.
47:32
Speaker 2: We ended up getting a second opinion just at Nature
47:36
Speaker 2: Wide Children's Hospital because everyone raves about doctor Wood and
47:40
Speaker 2: we were super happy with our team. I talked to
47:42
Speaker 2: our sergeant about it and he was like, Hey, if
47:44
Speaker 2: we can get a covered by the insurance, there's no
47:46
Speaker 2: reason to not go. Anyone who can get more eyes
47:48
Speaker 2: on him is great. We work with them all the time,
47:52
Speaker 2: Like I'm happy to send him out there and just
47:54
Speaker 2: send all the stuff. Uh. We ended up going out
47:57
Speaker 2: there in August. We saw them. They gave us no
48:00
Speaker 2: new information, which is exactly what we wanted, Like they
48:03
Speaker 2: were completely on board with what our team was doing.
48:05
Speaker 2: They did a exam under anesthesia and that's when he
48:08
Speaker 2: got his first round of botox because it was in
48:12
Speaker 2: the works with chop at our hospital. But his skin
48:15
Speaker 2: was so thin sill, and I kind of was like,
48:19
Speaker 2: my main focus was to like get his skin healthy,
48:22
Speaker 2: get him healthy. He was handling the irrigation spine and
48:25
Speaker 2: I was like, onen's I feel like he's in a
48:27
Speaker 2: good place to like kind of go back to this
48:29
Speaker 2: maybe rash territory. We'll do the botox. So he got
48:35
Speaker 2: around a botox when we were at Nationwide and it
48:39
Speaker 2: worked great. It's worked great for us. They started him
48:41
Speaker 2: on a different laxative he takes. It's like dural wax
48:45
Speaker 2: is what they call it here. So he takes like
48:48
Speaker 2: five miligrams of that every day. And since then he's
48:53
Speaker 2: had two other rounds of botoks, so three rounds of
48:55
Speaker 2: boat talks total. The first were three months apart, this
48:59
Speaker 2: last round was five months apart. And for us, the
49:03
Speaker 2: botox has really been a game changer. He every time
49:10
Speaker 2: he gets it, he's kind of been able to stretch longer.
49:12
Speaker 2: Before we notice that he's kind of going back to
49:15
Speaker 2: this like ham Surreil of like does it make more
49:18
Speaker 2: sense to up his laxative, which is what we kind
49:20
Speaker 2: of tried the last time. We played around with those
49:22
Speaker 2: laxative dosage a little bit to be like, Okay, now
49:23
Speaker 2: that's the botox has kind of worn off. Maybe if
49:25
Speaker 2: we just like bump them up a bit, that can
49:27
Speaker 2: get him over the hump. But in his case, it doesn't.
49:30
Speaker 2: That doesn't seem to be working. He gets a lot
49:33
Speaker 2: of cramping from like any laxative that he's on, so
49:36
Speaker 2: like there are times where like he gets so crampy
49:38
Speaker 2: that he's just uninterested in eating, and then toddlers kind
49:42
Speaker 2: of don't eat anyway, and a lot of the kind
49:46
Speaker 2: of uncomfortable toddler symptoms of like they have a fever.
49:49
Speaker 2: All these things can also mimicked and trocolates, so it's
49:52
Speaker 2: it was getting complicated of trying to figure out like
49:55
Speaker 2: where he was. So yeah, we're kind of just like
49:59
Speaker 2: sticking the botox rapping out because it works. Our Sergeant's
50:02
Speaker 2: happy to do it as much as he wants. He
50:04
Speaker 2: is not on a laxative from this last round. He's
50:07
Speaker 2: just been soling on his own completely with the botox.
50:11
Speaker 2: Like I said, he just turned two this week, so
50:13
Speaker 2: we're kind of starting to talk about like a long
50:16
Speaker 2: term plan when it comes to like what we're gonna
50:18
Speaker 2: do for party training for him. We're really lucky that
50:22
Speaker 2: also a child, they have like a ballot management that
50:28
Speaker 2: he is not in a lot. Yes, yeah, so I
50:33
Speaker 2: was saying that, Yeah, we just sit around a botox.
50:36
Speaker 2: He's not on a laxative at the moment. We're doing
50:38
Speaker 2: like a magnesium like it's a holistic magnesium like power
50:42
Speaker 2: that we put in there every day. It kind of
50:44
Speaker 2: just helps like keep his sool softer so he can
50:47
Speaker 2: get it out. But it's not like a stimulant at all.
50:49
Speaker 2: So we're that's kind of like what we've been doing
50:54
Speaker 2: for him now. And then he did have one andropolita
50:57
Speaker 2: scare uh when he was like thirteen months old. We
51:01
Speaker 2: all got the stomach bug and it kind of really
51:03
Speaker 2: knocked him on his butt. We were hospitalized for like
51:07
Speaker 2: a day and a half just kind of to keep
51:09
Speaker 2: an eye on him, and then we went home on
51:13
Speaker 2: what is it the flag ole, which is just like
51:15
Speaker 2: the most disgusting medication ever to try to give to
51:18
Speaker 2: a toddler because it tastes literally like metal. But he
51:22
Speaker 2: ended up like being able to take that, and we
51:24
Speaker 2: were just like you're getting like kind of around the clock,
51:26
Speaker 2: like three times a day for like a month until
51:28
Speaker 2: he we started seeing the symptoms like dissipate, so like
51:32
Speaker 2: he didn't technically get diagnosed with EAC, but I was like,
51:35
Speaker 2: I think that that's I think the stomach bomb kind
51:38
Speaker 2: of set him over. So now I like live in
51:41
Speaker 2: paralyzing fear of the stomach bug because I'm like, I
51:44
Speaker 2: can't go back to the hospital with a crazy two
51:47
Speaker 2: year old who like runs around and now like tries
51:49
Speaker 2: to rip his I to be out. So I was like, Wow,
51:51
Speaker 2: this was so much easier when you were a baby
51:54
Speaker 2: and you would lay there because this was like the
51:56
Speaker 2: last time in July, when he was thirteen months old,
51:57
Speaker 2: was the first time that he was kind of like
52:00
Speaker 2: aware of being hospitalized and like could move and walk,
52:05
Speaker 2: and he's a brute. He runs, he jumps, He is
52:09
Speaker 2: not a kid that can be contained, so it was
52:12
Speaker 2: very challenging too, and that that like he also like
52:16
Speaker 2: won't watch TV, so like it was like there was
52:19
Speaker 2: kind of nothing, and by the time the anibionic had
52:21
Speaker 2: like started to kick in, he like perked right back
52:24
Speaker 2: up within like eight hours. And I was like, this
52:26
Speaker 2: is gonna be really hard to have you in here
52:29
Speaker 2: with this with your ivy to keep it in because
52:32
Speaker 2: like you have to be plugged in for a certain
52:34
Speaker 2: amount of time. So like that was very challenging, and
52:36
Speaker 2: I was like, ooh, anything again that we can do
52:39
Speaker 2: to keep you out of impatient is like always my
52:42
Speaker 2: priority because it's just so hard to have such a
52:46
Speaker 2: young kid in a hospital room for them, for everyone,
52:50
Speaker 2: it's just like just kind of the worst experience ever.
52:54
Speaker 1: Yes, I can imagine. But what a fascinating story. Thank
52:58
Speaker 1: you so much for sharing the first the first couple
53:02
Speaker 1: of years. It's it's amazing. There's a couple of things
53:05
Speaker 1: that really stood out to me. One is obviously mother's intuition.
53:11
Speaker 1: I will always advocate for that. It is so so important,
53:15
Speaker 1: not just from the people that I speak to, but
53:17
Speaker 1: from my own experience and my own mother. If it
53:21
Speaker 1: hadn't been for my mum's intuition, things would have been
53:24
Speaker 1: very very different for me. So I will forever be
53:30
Speaker 1: grateful for that and forever advocate for mother's intuition. And
53:35
Speaker 1: I guess from that point, if you feel something is wrong,
53:39
Speaker 1: is it? I guess the question to ask is it's
53:45
Speaker 1: just a feeling, isn't it. I don't think there's there's
53:48
Speaker 1: anything you can quite put your finger on. Is it
53:51
Speaker 1: something like that? But you you.
53:53
Speaker 2: Just so I would, I would say, so, I haven't.
53:56
Speaker 2: I've got like I have always like heard of other people,
54:00
Speaker 2: like before I became a mother that it was potentially
54:02
Speaker 2: a thing that when like that, it's just something that
54:04
Speaker 2: kind of moms known. I always kind of had a
54:07
Speaker 2: general understanding and be like, oh, well that makes sense
54:10
Speaker 2: in a way. And like I said, I was a
54:12
Speaker 2: danity for a long time. So like in any kind
54:14
Speaker 2: of form of caregiving, I feel like if you're really
54:16
Speaker 2: bonded with the child, there's a certain type of understanding
54:20
Speaker 2: that you that you have with them because you're physically
54:22
Speaker 2: taking care of them. But it was kind of nothing
54:26
Speaker 2: like I really anticipated. It was just like it was
54:31
Speaker 2: just like one of those things that like it just
54:34
Speaker 2: was like I just knew that something was wrong with him,
54:38
Speaker 2: like as much as I need that, Like the sky
54:40
Speaker 2: was blue is the best way to like describe it.
54:43
Speaker 2: It's just like kind of like a thing that I
54:46
Speaker 2: just knew was the case, Like it had always been
54:48
Speaker 2: in my brain, like even before like I knew him
54:52
Speaker 2: essentially because I didn't feel that way when I was
54:54
Speaker 2: pregnant though, like I had no inclination that anything was wrong.
54:59
Speaker 2: But like as as soon as I like saw him
55:01
Speaker 2: and felt it and had inult him, like that was
55:02
Speaker 2: the first thought I had, I was like, something is
55:04
Speaker 2: wrong with him. And it's since I It gets tricky
55:10
Speaker 2: when you have a medically complicated kid because there's a
55:14
Speaker 2: certain level of anxiety that comes with that, and there
55:18
Speaker 2: or has been times where I'm like, am I worrying something?
55:21
Speaker 2: And because like I'm too clawed up in my own head,
55:25
Speaker 2: and then I always kind of go back to that
55:26
Speaker 2: like feeling of like I just you just kind of know.
55:30
Speaker 2: And when I have known that something has been off
55:32
Speaker 2: with them, like every time I have been correct, even
55:35
Speaker 2: with instances with my other daughter, it's not as strong
55:37
Speaker 2: with her, it's more of like that connection I was
55:41
Speaker 2: like just from like being her mother, her primary caregiver.
55:43
Speaker 2: But like with him, it's very like clear, like in
55:47
Speaker 2: my brain, like I was saying, like it's just as
55:49
Speaker 2: clear as anything else is, Like I just know and
55:52
Speaker 2: that is it, and I don't. It doesn't give me
55:55
Speaker 2: anxiety because I know that it will get solved because
55:58
Speaker 2: I'm like, oh, there's a problem, we can fix it.
56:00
Speaker 2: It's not one of those kind of like oh, that's
56:02
Speaker 2: weird he didn't eat as much today or something like that,
56:05
Speaker 2: because that's like more anxiety. It's like kind of how
56:08
Speaker 2: I would describe it, if that makes sense.
56:10
Speaker 1: Yeah, yeah, that makes absolute sense to me. From again
56:13
Speaker 1: from people I've spoken to, it's not necessarily something you
56:17
Speaker 1: can It's a feeling. It's not necessarily something you can say, oh,
56:22
Speaker 1: well it's this. It's interesting you say, didn't have it
56:25
Speaker 1: during your pregnancy, but as soon as you know, you know,
56:30
Speaker 1: and it's it is. It's again something I would was
56:34
Speaker 1: always constantly advocate for. I think it's it's incredibly important.
56:40
Speaker 1: And I guess from that as well, because you knew
56:44
Speaker 1: something wasn't right and they kept telling you it could
56:47
Speaker 1: be this, it could be that, or it's not this
56:48
Speaker 1: and it's not that. Was this sort of like a
56:51
Speaker 1: sort of a validation at the end that you thought,
56:54
Speaker 1: even though it turned out to be hirshprungs and you
56:56
Speaker 1: thought it was something else, did you think, Actually, I'm
57:00
Speaker 1: really glad I persisted, and I'm really glad that I,
57:02
Speaker 1: you know, was right in the end.
57:04
Speaker 2: Yeah, I think that that feeling hit me, like as
57:08
Speaker 2: soon as we got into the emergency room, and I
57:12
Speaker 2: like the nurses like were not that I was looking
57:15
Speaker 2: for someone to believe me, but like one of the
57:17
Speaker 2: nurses like at like like that she said that verbatim
57:20
Speaker 2: to me. She was like, I believe you. And I
57:23
Speaker 2: didn't realize how like as soon as she said that
57:25
Speaker 2: and I was there, I like the relief that I felt.
57:30
Speaker 2: And I actually think that like because his journey was
57:33
Speaker 2: so there was just so many points to it, and
57:36
Speaker 2: there was also just like so much that I didn't
57:38
Speaker 2: mention from when we were in there because there was
57:40
Speaker 2: just it's not relevant anymore, but like the tests and
57:43
Speaker 2: all of the things that like by the end point,
57:45
Speaker 2: like I was also just so because I was postpartram,
57:48
Speaker 2: I was just so like kind of like broken from
57:50
Speaker 2: the experience that I'm so glad that our sergeon pushed
57:54
Speaker 2: me because I was at the head in the headspace
57:56
Speaker 2: of just like I I can't go on with this anymore.
58:00
Speaker 2: And kind of that that feeling, that intuition kind of
58:04
Speaker 2: like was satisfied in a way because like I had
58:08
Speaker 2: seen them do everything to take care of him, so
58:14
Speaker 2: like by the end of it, like I kind of
58:16
Speaker 2: was like I just need we need to get out
58:18
Speaker 2: of here, like we need to live our life and
58:19
Speaker 2: all these they but like I did have that like
58:24
Speaker 2: sense that into relief when he had gone into the
58:27
Speaker 2: emergency department and that nurse said that to me, like
58:29
Speaker 2: I will never forget her face. And she was with
58:32
Speaker 2: us where like most of that time, and then she
58:34
Speaker 2: was gone, but like I will never forget her face.
58:37
Speaker 2: When she just looked at me just like very matter
58:38
Speaker 2: of fact and she was like I believe you, and
58:40
Speaker 2: then just walked us back, And it was the one
58:44
Speaker 2: of the biggest reliefs that I've ever had, and like
58:46
Speaker 2: taking care of just being like, Okay, we're in a
58:48
Speaker 2: place now where like someone whose job it is will
58:51
Speaker 2: figure this out for me, because like I'm his mother,
58:54
Speaker 2: is my job to protect him and to advocate him
58:56
Speaker 2: for him, But like I'm not a medical professional, and
58:59
Speaker 2: he was like four days old at that point, so
59:01
Speaker 2: it was like, I don't he's so tiny. What can
59:03
Speaker 2: I do besides like bring him here? So I will.
59:06
Speaker 2: I'm so grateful because I know that a lot of
59:09
Speaker 2: people have not had that experience, and they've had to
59:11
Speaker 2: like really fight and advocate so heavily for their children
59:15
Speaker 2: and travel and they don't have the quality care in
59:20
Speaker 2: their backyard that we do. And it has made a
59:23
Speaker 2: shumongous like impact and like our mental health as a family,
59:28
Speaker 2: and for Sterling too, to know that he's like growing
59:31
Speaker 2: up with these same doctors and these people that have
59:34
Speaker 2: seen him through when he was a baby until he's
59:37
Speaker 2: two years old. We bring him in here that nurses
59:40
Speaker 2: love him. Unrelated to his hirsprungs, I had taken to
59:43
Speaker 2: the emergency room the day after his birthday because I
59:47
Speaker 2: thought he broke his leg, because he, like I said,
59:49
Speaker 2: runs around and jumps on everything. And we were in
59:51
Speaker 2: the emergency department and one of the nurses who knows us,
59:54
Speaker 2: was like down there and because they get like a
59:56
Speaker 2: little alert when he comes in, and they were like,
59:59
Speaker 2: you didn't call us, like is he okay? And I'm
1:00:01
Speaker 2: like no, it's it's his leg. It's actually like not
1:00:03
Speaker 2: his hearsprings at all. When she was like, I'm so
1:00:06
Speaker 2: leaky that that's the case. But then like you got
1:00:08
Speaker 2: to see her, and we've seen her other nurses down
1:00:10
Speaker 2: there too, and it's like, I know so many people
1:00:13
Speaker 2: don't have the community of care providers around them that
1:00:18
Speaker 2: they so desperately deserve to have to feel her heard
1:00:22
Speaker 2: and listen to, and it's like really changed the Hirstpry's
1:00:26
Speaker 2: diagnosis like changed our family and it will always be
1:00:28
Speaker 2: different now and we couldn't imagine our life like without it.
1:00:32
Speaker 2: But being able to have people that believe you and
1:00:34
Speaker 2: trust you and like want to do the best for
1:00:37
Speaker 2: your children and also watching them care for the community
1:00:40
Speaker 2: has been just like so beneficial for us.
1:00:43
Speaker 1: Yeah, nice, definitely, And I know with CHOP as well,
1:00:47
Speaker 1: from people that I've spoken to both Chop and nationwide,
1:00:53
Speaker 1: there seemed it seemed very much to be the two
1:00:56
Speaker 1: specialist areas in America. So I guess it's quite very fortunate.
1:01:02
Speaker 1: The UI, he said, I think needs eight minutes drive
1:01:05
Speaker 1: away from out of the best.
1:01:07
Speaker 3: Yeah, yes, it's it's truly amazing, and like we when
1:01:13
Speaker 3: we flew to all high of it was also just
1:01:14
Speaker 3: like an hour and like, I just wish so much
1:01:17
Speaker 3: that everyone could everyone that needs.
1:01:19
Speaker 2: This type of care like could get it. And it's
1:01:22
Speaker 2: like so heartbreaking that that's not the case for like
1:01:25
Speaker 2: some of these families, and they've had such a hard time,
1:01:29
Speaker 2: so they'll like even just like within the Hirshbroke's community
1:01:32
Speaker 2: of all the people that like I've made posts of
1:01:34
Speaker 2: like with about his healing and all these things, and
1:01:37
Speaker 2: like the information whenever anyone is like local ish to
1:01:40
Speaker 2: our area, I'm always like, oh, this is our surgeon.
1:01:43
Speaker 2: We love them, Like here's the protocol of like how
1:01:45
Speaker 2: to get in touch with them. And it's just been
1:01:47
Speaker 2: so nice to also be able to like kind of
1:01:49
Speaker 2: like pass that care along to like other families, especially
1:01:54
Speaker 2: ones that could potentially be like traveling out of state
1:01:56
Speaker 2: for care. And you've like met up with families here
1:01:59
Speaker 2: that have come and to try to like be able
1:02:02
Speaker 2: to have Stirling be around other kids that have hirshbrongs.
1:02:07
Speaker 2: I think is like super important that he has like
1:02:10
Speaker 2: peers that as he gets orger, he can like kind
1:02:13
Speaker 2: of like relate to and they can share their story
1:02:15
Speaker 2: among each other. So he doesn't feel like he's the
1:02:18
Speaker 2: only one like going through this.
1:02:21
Speaker 1: Yeah. Yeah, that's so so important, especially for a rare condition,
1:02:25
Speaker 1: because you can, like I did feel very much well,
1:02:28
Speaker 1: nobody else in the world has what I have. You know,
1:02:31
Speaker 1: do you think well so to know other people or
1:02:35
Speaker 1: certainly hear of other people that have gone through similar
1:02:38
Speaker 1: things to you, I think he's invaluable. And then just
1:02:43
Speaker 1: sort of finally before we wrap up the future, I
1:02:47
Speaker 1: guess for Sterling. I know you said he's just celebrated
1:02:50
Speaker 1: his second birthday and he's obviously been through a lot
1:02:57
Speaker 1: at the moment. I know you talked a little bit
1:02:59
Speaker 1: about the boat as well, but both sort of medically
1:03:04
Speaker 1: and non medically, what do you see for the Sterling's future?
1:03:11
Speaker 2: Yeah, I think that's a great question. I think that
1:03:13
Speaker 2: we have really learned in this past year too, Like
1:03:16
Speaker 2: there's a massive amount of like managing this disease that
1:03:20
Speaker 2: has to do with like his mental well being as
1:03:24
Speaker 2: much as like his physical well being, and we're really
1:03:30
Speaker 2: trying to figure ou out what life is going to
1:03:31
Speaker 2: look like now that he is older and kind of
1:03:36
Speaker 2: towing the line of like leading kind of maybe by
1:03:39
Speaker 2: like his example of like how much information he wants
1:03:44
Speaker 2: shared with peers about these things. He hopefully will be
1:03:48
Speaker 2: starting preschool that at the school that his sister goes
1:03:51
Speaker 2: to next year, and they're familiar with him, so it's
1:03:56
Speaker 2: it's a good kind of place for him. But yeah,
1:03:58
Speaker 2: we're we're kind kind of just like figuring out ways
1:04:01
Speaker 2: to kind of like enrich his mental health and making
1:04:05
Speaker 2: sure that he as he gets older, has this space
1:04:07
Speaker 2: to like really talk about this in the capacity that
1:04:11
Speaker 2: he wants to when knowing that like they're there are
1:04:15
Speaker 2: going to be hard days, but they will be they
1:04:17
Speaker 2: will be better, and making sure that he is not
1:04:19
Speaker 2: being isolated and that this is kind of like his
1:04:23
Speaker 2: journey and we're here to like at a certain point,
1:04:26
Speaker 2: like we're going to just be here to support him
1:04:28
Speaker 2: and we want him to be able to make decisions
1:04:32
Speaker 2: for himself and what feels good for him. That kind
1:04:35
Speaker 2: of a mental realm is like what we've really learned
1:04:37
Speaker 2: in this past year that so like when you have
1:04:40
Speaker 2: a baby and you're just trying to get through it
1:04:42
Speaker 2: and keep them elsy and then they're like the toddler
1:04:44
Speaker 2: and then now you're kind of like grappling with this
1:04:46
Speaker 2: thing of like our next big thing coming up is
1:04:49
Speaker 2: like potty training, and like I have friends who have
1:04:51
Speaker 2: kids the same age as him that are moving into
1:04:54
Speaker 2: this phase where this is the first time where like
1:04:58
Speaker 2: he's kind of being left behind a little bit in
1:05:01
Speaker 2: an aspect because it's not something that physically he is
1:05:04
Speaker 2: ready to do. We're in the building block stages to
1:05:07
Speaker 2: make sure that like when we do this it's successful
1:05:09
Speaker 2: for him, so that it's not to kind of further
1:05:13
Speaker 2: isolate him, and so we can set him up to
1:05:15
Speaker 2: make this be the best experience, the best of kind
1:05:17
Speaker 2: of like a not great situation potentially, like we want
1:05:21
Speaker 2: to do that. He's in pelic floor pt. We're talking
1:05:25
Speaker 2: about starting the bell management like boot camp, Like what
1:05:28
Speaker 2: that would look like, what steps we need to do
1:05:30
Speaker 2: to get him to a place where like he's healthy
1:05:33
Speaker 2: physically and mentally to like do something like that. But
1:05:36
Speaker 2: it has been with like an unexpected challenge of like
1:05:38
Speaker 2: watching some of his peers like kind of bypass him
1:05:43
Speaker 2: in a way of like they are now moving onto
1:05:46
Speaker 2: this next phase where he physically is just not ready
1:05:49
Speaker 2: to do that, And that's totally fine, But those are
1:05:54
Speaker 2: kind of milestones you're thinking of when you have a
1:05:56
Speaker 2: baby versus like having a toddler moving into like childhood
1:06:00
Speaker 2: then school and all those things. So like we're kind
1:06:02
Speaker 2: of just trying to lay the building blocks of that
1:06:05
Speaker 2: so that he feels prepared. And then yeah, from a
1:06:08
Speaker 2: physical aspect, like we CHOP is our primary hospital. We
1:06:12
Speaker 2: love them, We're amazing. We're kind of just like going
1:06:15
Speaker 2: with the flow of if botox worked, we'll do another realms.
1:06:18
Speaker 2: If it seems to not work, then we'll look at
1:06:20
Speaker 2: all glass day. We'll maybe start doing the Battle Management
1:06:23
Speaker 2: book clamp and see if potty training can help him.
1:06:26
Speaker 2: We are continuing our care at Nationwide mainly because they're great.
1:06:32
Speaker 2: They're just far away and it's kind of not a
1:06:35
Speaker 2: great fit for us just logistic wise. But they have
1:06:40
Speaker 2: a program where they transferred their kids into the Ohio
1:06:43
Speaker 2: state like Metapho system, where as an adult he would
1:06:48
Speaker 2: have transition of care, which CHOP does not have. And
1:06:51
Speaker 2: that is a huge thing that is obviously very far
1:06:53
Speaker 2: in our future. But I want when he is an adult,
1:06:57
Speaker 2: when he is eighteen and he's starting to age out
1:06:59
Speaker 2: of this like child medical system, that he's not starting
1:07:02
Speaker 2: from the floor like Brown zero. Essentially of finding a surgeon,
1:07:07
Speaker 2: getting a doctor, getting all these people that like need
1:07:09
Speaker 2: to get to know him. And I don't want him
1:07:11
Speaker 2: to be just like a chart to somebody. I want
1:07:13
Speaker 2: him to have a relationship with his care team because
1:07:16
Speaker 2: I think that is what is gonna push him into
1:07:18
Speaker 2: adulthood in the best possible way, because we don't know
1:07:22
Speaker 2: what that looks like. We have no idea what his
1:07:24
Speaker 2: body's going to do, how he's going to react. So
1:07:26
Speaker 2: like that's a reason, a huge reason that we're saying
1:07:29
Speaker 2: with We see nationwide once a year now and they
1:07:32
Speaker 2: check in with our chop team, but we physically go
1:07:35
Speaker 2: out there once a year, so they consume in persons
1:07:37
Speaker 2: he always doing and so we can continue our care
1:07:40
Speaker 2: in there. So like as he is an adult, he
1:07:43
Speaker 2: has comminuity of care. So that's kind of like our
1:07:46
Speaker 2: main focus right now. And having him be a regular
1:07:51
Speaker 2: toddler who jumps off of the things and breaks his
1:07:53
Speaker 2: leg is a very funny experience when you have a
1:07:57
Speaker 2: medical kid, then when you bring them in for a
1:07:58
Speaker 2: not you're non medical things. He kept telling all the
1:08:03
Speaker 2: doctors that came in that he was not there for
1:08:05
Speaker 2: his belly, He said, not belly, knee, hurts. Knee hurts,
1:08:10
Speaker 2: so he like because he gets skinnish sometimes because we've
1:08:13
Speaker 2: explained so many things that I was like, we're going
1:08:14
Speaker 2: to chop, but we're not going like for your belly,
1:08:17
Speaker 2: No one's gonna poke it to You're not getting IDs,
1:08:20
Speaker 2: you're not getting irrigated, Like we need to take a
1:08:22
Speaker 2: picture of your knee. And he was like, oh okay.
1:08:24
Speaker 2: But like everyone that came in they put gloves on.
1:08:26
Speaker 2: He reminded them that he was not there for his belly,
1:08:29
Speaker 2: he was there for his knees. So we're just very
1:08:32
Speaker 2: excited to watch him grow and succeed in any way,
1:08:36
Speaker 2: shape or format. It is because he's such a special,
1:08:40
Speaker 2: special kid, and we're very lucky that he is hers.
1:08:43
Speaker 2: We love him so much.
1:08:45
Speaker 1: It's a fantastic sentiment to finish on, and I think
1:08:48
Speaker 1: the only thing left for me to say is just
1:08:50
Speaker 1: thank you so much for coming on, for sharing sterling story,
1:08:55
Speaker 1: and for sharing the journey you've all been on, and
1:08:59
Speaker 1: also just to wish you and your family just the
1:09:03
Speaker 1: very best for everything in the future. And no broken legs.
1:09:08
Speaker 2: Yeah, no broken legs, thank you very much. Yeah, no. Croglan,
1:09:13
Speaker 2: thank you so much for having me on This was
1:09:15
Speaker 2: so nice to talk.
1:09:18
Speaker 1: Thank you for listening and being part of this growing community.
1:09:21
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
1:09:24
Speaker 1: leave a review, and share it with someone who might
1:09:27
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1:09:29
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
1:09:35
Speaker 1: See you next week.