Latest / Tom's Hirschsprung's Podcast / Episode 71 - With Lila Mackenzie

Transcript

Episode 71 - With Lila Mackenzie · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our provide
0:08
Speaker 1: a look into the remarkable experiences of the most inspiring
0:11
Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
0:40
Speaker 1: episode seventy one of Tom's Hirshprung's Podcast. I am delighted
0:45
Speaker 1: to be joined all the way from Australia via Portsmouth.
0:49
Speaker 1: Lyla Mackenzie Lyla, Welcome to the podcast.
0:53
Speaker 2: Thanks Tom, it's such a pleasure to be here. It's
0:55
Speaker 2: great to be Yeah, talking to you on the screen, fantastic.
0:59
Speaker 1: Yeah, I'm absolutely delighted to have you on. I'd really
1:02
Speaker 1: really glad when I got your message that said, I
1:04
Speaker 1: really want to come and tell my story. I have
1:07
Speaker 1: a one year old I want to come and tell
1:10
Speaker 1: everything that we've been through when it comes to Hirshprung.
1:13
Speaker 1: So I am. I'm really looking forward to listening to
1:16
Speaker 1: this story. So, I guess probably the logical place is
1:21
Speaker 1: to start from from the beginning. I guess would you
1:25
Speaker 1: like to take us from there?
1:28
Speaker 2: Yeah, sure, let's start at the start. Hey, So I
1:34
Speaker 2: have two girls who are five and three now and then,
1:39
Speaker 2: and they don't have any kind of diagnosis, and then
1:43
Speaker 2: we now have a son who is currently fourteen months old,
1:47
Speaker 2: so he was born in January twenty twenty four. Yeah,
1:52
Speaker 2: and obviously, as people know about Hirshprung's that there's generally
1:56
Speaker 2: no clue that it's even there in body prior to birth.
2:01
Speaker 2: So yeah, we actually had a home birth. So my
2:04
Speaker 2: first two children were born in the hospital, in the
2:07
Speaker 2: public system, and then the third time around we decided
2:11
Speaker 2: to have a home birth. So the bird, I think
2:14
Speaker 2: experience was incredible. I'm really really grateful that I had
2:18
Speaker 2: that experience behind me because I felt like I actually
2:24
Speaker 2: had quite a lot of reserves and energy and stamina
2:28
Speaker 2: to then go into the hospital system and try and
2:31
Speaker 2: navigate what was happening with our little Jordan. So yeah,
2:37
Speaker 2: he was born quite swiftly and calmly and beautifully on
2:40
Speaker 2: my bed, and then it got to I think, like
2:44
Speaker 2: most Hirschbruns babies, it got to about four y eight hours,
2:48
Speaker 2: probably a bit over that, and he started to lose
2:51
Speaker 2: interest in feeding, started to throw up some milk, but
2:55
Speaker 2: then it slowly started turning a bit more foamy, and
3:00
Speaker 2: then by the time we were on the way to
3:01
Speaker 2: the hospital, it was turning yellow and bilious. But prior
3:05
Speaker 2: to that, yeah, it was just over forty eight hours.
3:08
Speaker 2: I had a midwife around actually who was visiting, and
3:12
Speaker 2: I was feeding at the time, and he vomited at
3:14
Speaker 2: the end of that feed, and she asked whether she
3:17
Speaker 2: should stay and wait till the end of the feed
3:19
Speaker 2: and help me some more and just be that support,
3:22
Speaker 2: and I said, no, it's okay, I'll just I'll just
3:26
Speaker 2: stay at home. Maybe I'll hop into the bed and
3:28
Speaker 2: continue to feed him and just see how we go.
3:31
Speaker 2: But you know, within a few hours with that happening,
3:33
Speaker 2: I was on the phone to my second midwife. I
3:35
Speaker 2: had two midwives for the birth, and the other midwife
3:39
Speaker 2: who was my primary caregiver. She then called ahead to
3:43
Speaker 2: the local emergency department and spoke to the pediatric team
3:47
Speaker 2: and just explained the symptoms and what was happening, and
3:49
Speaker 2: I would be presenting to hospital. So I think I
3:53
Speaker 2: actually left it a little bit longer then probably what
3:56
Speaker 2: would have happened if I was obviously still in hospital,
4:00
Speaker 2: because I was in a real newborn bubble bliss, you know,
4:03
Speaker 2: in my home. It was the first time ever that
4:06
Speaker 2: I'd had a baby at home, and I wanted to
4:07
Speaker 2: stay at home and be tucked up in bed and
4:09
Speaker 2: not leave. So I was trying my best to just
4:11
Speaker 2: hope that this would pass. And of course, obviously now
4:14
Speaker 2: we know that that was never going to be the case.
4:16
Speaker 2: So yeah, we got there as soon as we could
4:19
Speaker 2: once we realized that things were deteriorating quite rapidly. And
4:24
Speaker 2: I remember the drive to the hospital. It was about
4:25
Speaker 2: forty five minutes drive and I sat in the back
4:28
Speaker 2: with baby Jordan, and I just cried the whole way
4:31
Speaker 2: there because I knew deep down that something was seriously wrong,
4:35
Speaker 2: but I didn't know what. And of course I was
4:37
Speaker 2: still hopeful that we might get to a hospital and
4:40
Speaker 2: he would pass that first stall and then we would
4:44
Speaker 2: come home again. And I wasn't expecting to then be
4:47
Speaker 2: transferred to a bigger hospital, which my midwife did say
4:49
Speaker 2: to me on the phone, akabag and expect or anticipate
4:53
Speaker 2: that you might potentially be transferred to a larger hospital
4:56
Speaker 2: in the city. And when she said that, I just thought,
4:59
Speaker 2: you know, we'll be be home in no time, and
5:02
Speaker 2: you'll soon find out that is obviously not the case.
5:05
Speaker 2: So yeah, the main symptom was, or sign was that
5:08
Speaker 2: he didn't ask that first, MACONI and Pooh. So we
5:11
Speaker 2: got to the local hospital. Like I said, forty five
5:14
Speaker 2: minute drive. That's local over here, not here. Yeah, No,
5:19
Speaker 2: everything's very far apart in Australia, so we're not completely
5:25
Speaker 2: regional but somewhat. So yeah, forty five minute drive. We're
5:29
Speaker 2: in the emergency department. At this stage, there wasn't a
5:32
Speaker 2: separate pediatric emergency or a children's emergency and an adult one.
5:36
Speaker 2: Now there is at that hospital, but last year there wasn't,
5:39
Speaker 2: so we were in with everyone else. By this point.
5:42
Speaker 2: It was a Friday night, it was about seven pm.
5:44
Speaker 2: There was quite a few drug affected people kind of
5:48
Speaker 2: wandering around in the waiting room. There was actually a
5:51
Speaker 2: woman in front of me in the line who was
5:53
Speaker 2: being triaged at the desk and she had a canula
5:55
Speaker 2: in her hand and she was obviously affected by drug
5:59
Speaker 2: youth and she was asking for it to be ripped out,
6:01
Speaker 2: and everyone was just there was security there, and it
6:04
Speaker 2: was quite scary place to be with, you know, a
6:06
Speaker 2: two day old baby, even though I was an experienced
6:08
Speaker 2: mother to previous children to have my third baby, but
6:11
Speaker 2: such a run new baby and being this kind of
6:14
Speaker 2: somewhat unsafe place, is how it felt, and not knowing
6:17
Speaker 2: what was going on, it was rather scary at the time.
6:21
Speaker 2: And then we got we got moved through quite quickly,
6:23
Speaker 2: obviously because symptoms, and by this point he was still deteriorating,
6:26
Speaker 2: so starting to go really kind of lethargic and continuing
6:31
Speaker 2: to vomit and yeah, phoney and bilious, and we ended
6:35
Speaker 2: up in an emergency floor. I think we left there
6:38
Speaker 2: out about one or two in the morning. I remember
6:41
Speaker 2: again being in a tubercle, but you can hear, you know,
6:45
Speaker 2: it's on a ward. You can hear everyone around and
6:47
Speaker 2: either side of us. Actually they were both adults that
6:50
Speaker 2: had had a drug overdose, so that there was you
6:53
Speaker 2: could hear the talk of taking needles out of pockets
6:56
Speaker 2: and you know, what have you odd on tonight and
6:59
Speaker 2: all that stuff, and we're just there with this little
7:01
Speaker 2: tiny baby and he was getting Jordan was getting his
7:05
Speaker 2: canula put in his hand, and they still had no
7:08
Speaker 2: idea really what was going on, and there was no
7:10
Speaker 2: talk of posh bunks at this point. And I was
7:13
Speaker 2: still very much advocated him to try and get back
7:16
Speaker 2: home at this stage. So I was like, and I
7:18
Speaker 2: even said Can I just stay here at this hospital?
7:20
Speaker 2: Can I have a go on to Award and just
7:22
Speaker 2: continue to try and feed and get him back home.
7:25
Speaker 2: And someone had to come and pretty much have quite
7:28
Speaker 2: a stern talking to me and say this is really
7:30
Speaker 2: serious and you need to be seen by a specialist team.
7:35
Speaker 2: So that's when I realized, Okay, we really do need
7:37
Speaker 2: to follow this through and I need to just listen
7:40
Speaker 2: to the medical staff and the professionals here and yeah,
7:44
Speaker 2: follow their lead. So I got transferred via ambulance with
7:48
Speaker 2: Jordan to the Royal Children's Hospital in Melbourne. So that
7:51
Speaker 2: was another hour and a bit probably in the ambulance.
7:56
Speaker 2: My partner drove back home, so forty five minutes in
7:59
Speaker 2: the opper direction to then go and get the bag
8:01
Speaker 2: that we hadn't packed and then drive back to the hospital.
8:05
Speaker 2: So he pretty much arrived at the same time that
8:08
Speaker 2: I arrived, because he left before I got in the ambulance.
8:13
Speaker 2: I also remember Jordan was hooked up to an IVY
8:17
Speaker 2: just with failing solution to keep him hydrated at that time,
8:20
Speaker 2: and the machine for the IVY kept beeping and turning off,
8:24
Speaker 2: and because they have to get the dosage really really accurate,
8:27
Speaker 2: on such a tiny baby, and in the ap we
8:31
Speaker 2: were ten minutes down the road in the ambulance and
8:32
Speaker 2: the machine kept beaping and turning off, So then we
8:35
Speaker 2: had to do a U turn and come back to
8:37
Speaker 2: the original hospital to get that sorted, because it was
8:40
Speaker 2: quite a long drive and they wanted to make sure
8:42
Speaker 2: that he was hydrated enough. And as we got back,
8:45
Speaker 2: actually the same drug affected woman that I met in
8:49
Speaker 2: the reception who wanted the canula out of her hand,
8:51
Speaker 2: was standing in the ambulance bay as we tried to
8:54
Speaker 2: park back in, so then we couldn't park and there
8:56
Speaker 2: was security trying to remove her. So we were delayed
8:59
Speaker 2: again by this same lady, who I have absolute compassion
9:03
Speaker 2: for at the same time, because you know, she's obviously
9:05
Speaker 2: going through a word of hurt and is struggling in
9:08
Speaker 2: her own life. But at the same time, you know,
9:10
Speaker 2: I've got this tiny baby and time is precious and
9:12
Speaker 2: I just needed to get back in there and make
9:14
Speaker 2: our way. So that was quite frustrating and challenging to
9:17
Speaker 2: just sit there and wait. But anyway, we got that sorted.
9:21
Speaker 2: We got back to back on the road and on
9:23
Speaker 2: the way to Melbourne and the Royal Children's Hospital is
9:27
Speaker 2: just incredible. We are under the absolute world class team,
9:32
Speaker 2: but at the time, again still not knowing what was wrong.
9:36
Speaker 2: This is early hours of the morning now on a Saturday,
9:39
Speaker 2: and yeah, those first couple of days in there were
9:42
Speaker 2: really tough, still trying to find out a diagnosis. They
9:45
Speaker 2: did a color contrast test from the top down and
9:49
Speaker 2: the bottom up to see if there was any kind
9:51
Speaker 2: of obstruction or blockage, which there wasn't, so in a
9:56
Speaker 2: way I felt like that was good, but at the
9:57
Speaker 2: same time we had no answers, and they were potentially
10:01
Speaker 2: worried about a twisted bowl or something else, but that
10:04
Speaker 2: wasn't the case. And at this point he was nil
10:07
Speaker 2: by mouth. We stopped breastfeeding. I was just expressing milk
10:12
Speaker 2: in a pump and putting it in the fridge and waiting.
10:16
Speaker 2: But we were just doing maximum skin to kick skin,
10:19
Speaker 2: just keeping him on us. My partner and I were
10:21
Speaker 2: just tag teaming. We were allowed to stay with him
10:24
Speaker 2: twenty four seven. So this is a intensive care department.
10:28
Speaker 2: There was a pod or a room with two babies
10:30
Speaker 2: in and yeah, we were just allowed to stay stay
10:34
Speaker 2: bedside twenty four seven. We weren't allowed to sleep in there.
10:36
Speaker 2: Technically we had a chair which we would doze off
10:39
Speaker 2: in every now and then, and if the nurse caught
10:41
Speaker 2: us sleeping, she would say, you'd need to go and
10:43
Speaker 2: get a bed and leave, but we'd be like, no, no,
10:46
Speaker 2: we're awake, We're awake. Then my partner I just tagged teams,
10:50
Speaker 2: so he had a room. They gave us a room
10:52
Speaker 2: as well downstairs with a bed, so we would just
10:55
Speaker 2: do three or four hour ships and just rotate and
10:57
Speaker 2: just spend time holding Jordan and just staying with him
11:01
Speaker 2: and talking to him and cuddling him and just you know,
11:03
Speaker 2: running through all the tests that they needed to do.
11:07
Speaker 2: And then there was talk of fresh runs and there
11:11
Speaker 2: was a mention of the biopsy. And at that time,
11:15
Speaker 2: again I was still advocating hard and really reluctant to
11:20
Speaker 2: intervene any more than was required. And I think this
11:23
Speaker 2: is coming from a place of a home birth where
11:25
Speaker 2: I was trying so hard to not be in a
11:27
Speaker 2: medical system. And you know, medical systems are absolutely incredible.
11:31
Speaker 2: You know, it saved his life, but at the time
11:33
Speaker 2: I was like, surely he doesn't need all this, you know,
11:35
Speaker 2: like this is a bit overkill. So I said Initially,
11:39
Speaker 2: I declined the biopsy, which my partner wasn't happy with.
11:43
Speaker 2: So we were having our own internal kind of conversations
11:46
Speaker 2: about what we thought was right for Jordan, which is,
11:49
Speaker 2: you know, an ongoing struggle as a parent is wondering
11:52
Speaker 2: whether you're making the right choice for your child. And
11:57
Speaker 2: so that pushed things back twenty four hours, which in hindsight,
12:01
Speaker 2: obviously I would have made a different decision, but I
12:04
Speaker 2: still back what I did at the time because I
12:08
Speaker 2: was just doing what I thought was best and what
12:10
Speaker 2: I thought was right. I just said, just give us
12:11
Speaker 2: twenty four hours more, I'd like to reintroduce breast milk
12:15
Speaker 2: and just see what happens, and if he vomits and
12:17
Speaker 2: you know, the symptoms come back, then sure, let's go
12:19
Speaker 2: for the biopsy. So we did that, and we reintroduced
12:24
Speaker 2: breast milk, and the vomiting started again, and then I
12:28
Speaker 2: was like, right, okay, so it's obviously now that we
12:30
Speaker 2: do need to do the biopsy. But then they pushed
12:33
Speaker 2: just they said, now you have to wait twenty four
12:35
Speaker 2: hours because he's vomited again. We need to wait for
12:37
Speaker 2: that to clear, which I didn't know at the time
12:39
Speaker 2: that that was going to push things back a day,
12:41
Speaker 2: but it did, and time felt so crucial at this point,
12:44
Speaker 2: so then I was really really upset. But I had
12:47
Speaker 2: declined it to start with, and then it got moved
12:49
Speaker 2: to twenty four hours. Anyway, the biopsy was done. That
12:52
Speaker 2: was something that they recommended that we left the room for,
12:56
Speaker 2: and I again advocated for Jordan and said that I
12:59
Speaker 2: would like to be present, and I want to just
13:01
Speaker 2: be up by his head, holding his hand, talking to him,
13:05
Speaker 2: explaining everything that's happening. I know he's only two days old,
13:07
Speaker 2: but you know, he's going to hear my voice, even
13:09
Speaker 2: if he doesn't understand the words, he's going to feel
13:11
Speaker 2: more calm and if I'm there. And the surgeons explained
13:15
Speaker 2: that it could be quite traumatic for a parent to witness.
13:18
Speaker 2: You know, it's quite invasive, and I just said that's okay, Like,
13:22
Speaker 2: you know, I'm not going to feel traumatized, if anything,
13:24
Speaker 2: after more traumatized while leaving the room and not being
13:26
Speaker 2: present and not knowing what's going on and knowing that
13:28
Speaker 2: he doesn't he doesn't know where we are. So yeah,
13:32
Speaker 2: I staid present for the biopsy, and Jared did leave
13:35
Speaker 2: the room and went and had asleep and that's my partner,
13:38
Speaker 2: and yeah, it was. It was actually really special to
13:42
Speaker 2: be present for that and just talk him through it,
13:44
Speaker 2: and I felt like he was a lot more calm
13:46
Speaker 2: than potentially what he might have been if I wasn't there.
13:48
Speaker 2: So that was done, and within I think it was
13:51
Speaker 2: that same evening, actually they came back with the results
13:53
Speaker 2: that it was hash runs and at the time we
13:57
Speaker 2: just thought, great, you know, we've got an answer. That's amazing,
14:00
Speaker 2: and we know that now the next step is to
14:03
Speaker 2: have surgery and have this pull through procedure and then
14:06
Speaker 2: after that he'll be able to pooh buy in himself
14:08
Speaker 2: and then off we go on our merry way. So
14:12
Speaker 2: I was just really relieved that we knew what it
14:14
Speaker 2: was at that point in time. And I remember the
14:16
Speaker 2: surgeon saying to me, We're really sorry, this is not
14:18
Speaker 2: the diagnosis you want to hear, and this is going
14:21
Speaker 2: to be really tough on you, and I was just like,
14:22
Speaker 2: no way, Like I'm so just so grateful we know
14:24
Speaker 2: what it is. So then we were educated by the
14:28
Speaker 2: specialist team there. They have a colorectal team at the
14:32
Speaker 2: Royal Children's and two specialist nurses, Jess and Susie shout
14:37
Speaker 2: out to them because they are incredible, and they came
14:39
Speaker 2: bedside every day and they educated us on how to
14:42
Speaker 2: do the washouts quite quickly, and I jumped in with
14:45
Speaker 2: Jared and we learned that process. But there was a
14:49
Speaker 2: couple of hiccups. I think by day why and actually
14:52
Speaker 2: this might have even been before. I think this was
14:55
Speaker 2: before the results of the buy up. See day five,
14:59
Speaker 2: he took a turn and there was a fear that
15:03
Speaker 2: he was going down the path of sepsis. So and
15:07
Speaker 2: he was really lifeless that day. He didn't open his
15:10
Speaker 2: eyes all day. Yeah, he was really struggling. And I
15:13
Speaker 2: said to the doctors that morning on the rounds, I said,
15:15
Speaker 2: I'm really worried about him now, and I feel like
15:17
Speaker 2: he's deteriorating. And they I didn't know that sepsis was
15:22
Speaker 2: on the cards, but I saw it later on the
15:23
Speaker 2: medical notes and that that was a potential flag. And
15:28
Speaker 2: I remember actually also on that day, and I've got
15:31
Speaker 2: goosebumps now just just thinking about what happened. But I
15:34
Speaker 2: held him in my arms and I looked at him
15:36
Speaker 2: and I just talked to this, you know, two day
15:39
Speaker 2: old baby, or actually five day old at that point,
15:41
Speaker 2: and so floppy, so lifeless, didn't even open his eyes,
15:44
Speaker 2: and I just had this conversation with him, and I
15:47
Speaker 2: just said, if you need to go, like if you
15:50
Speaker 2: need to die, then that's okay by me. I didn't
15:53
Speaker 2: say it like that. I just said, this is your journey,
15:56
Speaker 2: this is your life. I'm just here as your mother
15:58
Speaker 2: to support you and guide you and walk beside you.
16:01
Speaker 2: And this is your journey in your life, and I'm
16:03
Speaker 2: not here to control it. So if it means that
16:07
Speaker 2: you need to go and you need to leave us,
16:09
Speaker 2: then you know I'm here with you and I'm going
16:11
Speaker 2: to support you every step of the way. So I
16:14
Speaker 2: had this really profound conversation with a five day old
16:16
Speaker 2: baby and explained that I was it was just the
16:20
Speaker 2: ultimate surrender and letting go and showing him and putting
16:26
Speaker 2: all of my trust in him as a baby and
16:28
Speaker 2: just knowing that whatever isn't it to be, will be,
16:31
Speaker 2: and I've just got to sit with that. So that
16:34
Speaker 2: was the real pivotal moment for me in kind of
16:39
Speaker 2: almost accepting that if he died, then that's part of life. Like,
16:44
Speaker 2: you know, if you can enjoy life this much, you've
16:47
Speaker 2: got to be accepting of grief and death because you know,
16:49
Speaker 2: we've all got the same outcome in the end, we're
16:51
Speaker 2: all going to die. Now. I know no one really
16:53
Speaker 2: talks about it, and it's quite a to be subject.
16:55
Speaker 2: But I was really open with Jordren from the start,
16:57
Speaker 2: and I'm so glad that I had that conversation. And
17:00
Speaker 2: our connection was really really deep from the start, from
17:04
Speaker 2: the birth process and before that even improvemency. So yeah,
17:09
Speaker 2: I just felt really connected and attuned to him, and
17:11
Speaker 2: I had that conversation and I felt like that shifted everything,
17:15
Speaker 2: mainly in my own head to accept what was going
17:18
Speaker 2: to be will be. So yeah, of course that is
17:21
Speaker 2: not the case. He is an absolutely thriving, healthily one
17:23
Speaker 2: year old now. But that was like the lowest of
17:27
Speaker 2: the low as you can imagine in the hospital that day.
17:30
Speaker 2: And I think it was either that evening or the
17:32
Speaker 2: I think it was that evening. Then we got the
17:34
Speaker 2: results and then we heard about pashmums and then we
17:36
Speaker 2: had it a plan, you know, and then we started.
17:38
Speaker 2: I think the washouts hadn't really started then, so that's
17:42
Speaker 2: I think why he was declining so much was because
17:45
Speaker 2: he hadn't had that relief and that blushed through his system,
17:49
Speaker 2: and maybe they had, but they weren't being done regularly enough.
17:52
Speaker 2: So as soon as we knew it was hush fruns,
17:53
Speaker 2: they were in the twice daily washouts. They were on
17:55
Speaker 2: top of it. We were allowed to slowly reintroduce milk.
17:58
Speaker 2: We did take that really though. There was times when
18:01
Speaker 2: we gave him too much milk and then he was
18:02
Speaker 2: vomit and we'd have to take a backstep and all
18:04
Speaker 2: back on the amount we were giving him. And because
18:06
Speaker 2: I wanted to breastfeed him directly, that was tricky for
18:10
Speaker 2: the hospital because they wanted to measure, you know, exact
18:13
Speaker 2: input of milk. But I knew that in terms of
18:18
Speaker 2: again attachment and connection to the mother baby diad is
18:22
Speaker 2: really important that they have direct breast milkits if they can,
18:26
Speaker 2: and I know not everyone can breastfeed, and I'm really
18:28
Speaker 2: grateful that I was able to have that journey with him.
18:30
Speaker 2: But yeah, so there was a bit of there was
18:33
Speaker 2: just ongoing conversations with the nurses and making sure that
18:37
Speaker 2: he was getting what he needed but not too much
18:39
Speaker 2: in terms of nourishment. Yeah, so we slowly got through.
18:44
Speaker 2: You know, after that, each day got better and better
18:47
Speaker 2: and I think we were in the had twelve days
18:49
Speaker 2: all up, and then we were allowed to go home,
18:52
Speaker 2: so you know, we went home with our wash out
18:54
Speaker 2: gear and then we knew that we were going to
18:56
Speaker 2: come back. The children's they do around three months of
19:00
Speaker 2: age they do the pull through procedure. I know it's
19:02
Speaker 2: different depending on where you're cared for, but three months
19:06
Speaker 2: was the age for us. So yeah, he was born
19:09
Speaker 2: in the January and then in the April he went
19:11
Speaker 2: back in for his full through procedure. So between getting
19:15
Speaker 2: home in late jam and April, we were just doing
19:18
Speaker 2: the twice to aarly wash out. We were breastfeeding if
19:20
Speaker 2: I was breastfeeding as normal, and that was our life, yeah,
19:24
Speaker 2: up until April. So our two older children, that was
19:28
Speaker 2: their new normal was to be a part of those
19:31
Speaker 2: washouts and help us get all the equipment. And yeah,
19:34
Speaker 2: they did amazing because that's a lot for them to
19:36
Speaker 2: handle as well. And then it got to April and yeah,
19:42
Speaker 2: he had his pull through surgery. It was short segment,
19:45
Speaker 2: which is obviously what everyone is hoping for as a
19:48
Speaker 2: diagnosis when you have hirshbrung. So we were really really
19:51
Speaker 2: grateful that we got the bane call from the surgeon.
19:54
Speaker 2: I think it was maybe an hour or so into
19:57
Speaker 2: surgery that they called and said its short segment and
20:01
Speaker 2: you know he's going through to recovery soon and you'll
20:04
Speaker 2: be back with him in about twenty minutes or so.
20:06
Speaker 2: It might have been longer. It might have been a
20:08
Speaker 2: two to four hours. I can't remember now, but yeah,
20:12
Speaker 2: it was. It was such a wild ride, all of that,
20:15
Speaker 2: and then even just to meet him in recovery and
20:19
Speaker 2: not expecting to see him so puffy, and yeah, it
20:22
Speaker 2: was quite quite a shock to see him in that way,
20:26
Speaker 2: quite confronting, but then the recovery process was reasonably good
20:32
Speaker 2: for him. I think we were cut the how long
20:35
Speaker 2: we're in there quite ave days, maybe maybe a week.
20:39
Speaker 2: I think it was a week. And then yeah, he
20:42
Speaker 2: started stalling by himself. That was amazing. I remember, I
20:46
Speaker 2: think it was myself. I wasn't on shift with Jordan
20:49
Speaker 2: at that point, so Jared was with him, and I
20:52
Speaker 2: was having a sleep who was still doing our rotation
20:54
Speaker 2: tag team stuff, And Jared text me and just said
20:59
Speaker 2: he's done a pooh himsel up and did the poor emoji,
21:02
Speaker 2: and I just like sprung out of bed, like, oh
21:03
Speaker 2: my God. And then he text me again before I
21:05
Speaker 2: even got dressed and said make that too. And then
21:07
Speaker 2: he text me again, He's like, make that's three. And
21:09
Speaker 2: it was a big one, and I was just like
21:10
Speaker 2: trying to race to the hospital and get back into
21:12
Speaker 2: his room. See this for myself, and I think many
21:17
Speaker 2: of your listeners will know that once it starts, it starts,
21:19
Speaker 2: and you know, it really really comes. So yeah, then
21:22
Speaker 2: it was just amazing to see him stalling by himself.
21:27
Speaker 2: So then we went home after about a week and
21:31
Speaker 2: he was great for about six weeks, and then he
21:35
Speaker 2: got his first proper virus. So we had six weeks
21:38
Speaker 2: of no washouts, just kind of our new normal life
21:42
Speaker 2: with him cooing by himself. And then after six weeks
21:46
Speaker 2: he got his first virus. And I think because having
21:48
Speaker 2: two older siblings who are in care and visiting friends
21:51
Speaker 2: and stuff, there's lots lots of germs and bugs going
21:53
Speaker 2: around our house. So yeah, he got a virus, and
21:57
Speaker 2: then he got entercolitis off the back of that, So
21:59
Speaker 2: that was our first experience of that life threatening infection.
22:06
Speaker 2: And I think at the time I was quite slow
22:08
Speaker 2: to pick up on the symptoms because I didn't know
22:11
Speaker 2: exactly what I was looking for, and some of the
22:13
Speaker 2: symptoms to start with are quite subtle. So yeah, I
22:17
Speaker 2: rushed to hospital with him, and I remember being in
22:21
Speaker 2: the emergency there and they're amazing. Like I spoke to
22:24
Speaker 2: Susie on the phone directly and she said, yeah, come in,
22:27
Speaker 2: bring him in. You sound quite concerned. I'm going to
22:29
Speaker 2: let the emergency department know you're coming. So they had
22:33
Speaker 2: all of his history. As soon as you get there
22:35
Speaker 2: into the emergency, they bring up his notes and you
22:38
Speaker 2: kind of I got whisked through quite quickly, and again
22:42
Speaker 2: because he was deteriorating quite rapidly. I remember standing there
22:44
Speaker 2: in a room and not being able to sit down
22:46
Speaker 2: and just holding him and he was just getting worse
22:47
Speaker 2: and lifeless. And his vomit ended up having brown specs
22:51
Speaker 2: of what I believeless species in it. I didn't know
22:54
Speaker 2: at the time whether it was blood or what it was,
22:56
Speaker 2: but I think now from doing a bit of research,
22:58
Speaker 2: I think that was speaker matter in his vomit. So
23:03
Speaker 2: we got rushed through quite quickly that time. It was
23:05
Speaker 2: a five nights day antibotics washouts. He recovered from that
23:09
Speaker 2: and then we came home and within four to six weeks,
23:13
Speaker 2: maybe even two weeks. I think two weeks after that
23:15
Speaker 2: he got it again. So then I went back again,
23:18
Speaker 2: had a two nights day antibotics again, ivy washouts, came
23:24
Speaker 2: back home, and then it happened again twice more so
23:27
Speaker 2: in the space of about four months, no, six months,
23:31
Speaker 2: he had antricholitis at least four times, only two that
23:34
Speaker 2: we were admitted for in hospital and the other two
23:37
Speaker 2: we managed at home. So by this point I was
23:39
Speaker 2: getting quicker at noticing those subtle symptoms to start with,
23:44
Speaker 2: and then I was like, right, we just got to
23:45
Speaker 2: get on these washouts quicker. And then yeah, for two
23:49
Speaker 2: of those episodes, we just gave him antibotics orally at
23:54
Speaker 2: home with a syringe while I was breastfeeding. I'd just
23:58
Speaker 2: poke it in the side and give him those that
24:01
Speaker 2: medicine that way. So yeah, we managed to avoid hospital
24:03
Speaker 2: for those second two episodes of entropolaitis. So that was
24:07
Speaker 2: a really rough hatch. And then they suggested once he
24:12
Speaker 2: got a bit better, they suggested that we go down
24:14
Speaker 2: the botox trial path. So oh, and we were doing
24:19
Speaker 2: dialatations as well during this period, so we've done a
24:22
Speaker 2: lot of month's work of daily dialatations. I think that
24:26
Speaker 2: was after this, Yeah, it must have been after the surgery,
24:30
Speaker 2: but there wasn't at least a daily intervention for him,
24:34
Speaker 2: which is just so fall on. And then yeah, we
24:38
Speaker 2: got to the botox trial and they suggested, let's give
24:42
Speaker 2: him botox general anesthetic, quick in and out in half
24:45
Speaker 2: a day, and that has been very effective. You know,
24:49
Speaker 2: it's had mixed results, but it has seen effective enough
24:52
Speaker 2: to offer it to many family so we were happy
24:55
Speaker 2: to give that a try after the rough trot that
24:58
Speaker 2: we'd had for you know, a he was ten months
25:00
Speaker 2: at this point, ten months old. We had the botox
25:03
Speaker 2: and that was really effective for big days. And then
25:08
Speaker 2: he got a new virus and then he just stopped storing,
25:11
Speaker 2: so he didn't have introcolitis to the point that we
25:14
Speaker 2: needed to give him antibotics, but there was definitely some
25:16
Speaker 2: early symptoms, so we just started wash outs again after
25:18
Speaker 2: six days, and then we continued washouts up until really recently,
25:25
Speaker 2: so I think he turned one. I actually came back
25:28
Speaker 2: to the UK with him late December through the new year,
25:33
Speaker 2: just for ten days stay. While he was there, he
25:36
Speaker 2: had some symptoms and we ended up in the urgent
25:39
Speaker 2: Care center down in Portsmouth and got him on some
25:42
Speaker 2: oral antibotics. And I was doing washouts at home with
25:45
Speaker 2: my mom at this point, so I trained her to
25:47
Speaker 2: do those, and then and I was doing dry capitas
25:52
Speaker 2: on the plane ione this Emirates plane in the toilet
25:54
Speaker 2: with my catheter, trying to relieve the pressure for him
25:58
Speaker 2: on the flight, which is not ideal. I'm sure I'm
26:00
Speaker 2: not the only one that's done that. I'm sure you
26:01
Speaker 2: know there's all sorts that go goes on in those
26:03
Speaker 2: aeroplane toilets by them. Yeah, that was an experience in itself. Anyway,
26:08
Speaker 2: we got home, We got back to Australia from the
26:11
Speaker 2: UK in the day before his birthday, so on the
26:14
Speaker 2: ninth of January. He turned one on the tenth of
26:16
Speaker 2: jan and then I think we did three washouts in
26:19
Speaker 2: that week of his birthday, and since then we haven't
26:21
Speaker 2: done one. So we're now in what March, and he's
26:25
Speaker 2: just suddenly I don't know what happened, but he turned
26:27
Speaker 2: one and he's just decided that everything's so much easier
26:30
Speaker 2: in terms of function of his body. So, yeah, he's
26:33
Speaker 2: stalling spontaneously. We're not doing any interventions. There's no sign
26:37
Speaker 2: of needing any further botox or surgery. He's just doing
26:40
Speaker 2: really really well. We give him a daily osma apse
26:43
Speaker 2: in his water and that seems to help. And other
26:47
Speaker 2: than that, the one thing that I have focused on
26:49
Speaker 2: is my diet, which I know Simone risk Sect. I
26:52
Speaker 2: listened to her episode recently that you've had on your podcast,
26:56
Speaker 2: and I remember she talked quite a bit about diet
26:59
Speaker 2: with her son, and that's something that we've definitely focused
27:02
Speaker 2: on too. It's been more so me because I've been
27:04
Speaker 2: the one breastfeeding, and so I've really changed my diet,
27:07
Speaker 2: but we're noticing it now with Jordan and introducing food.
27:10
Speaker 2: It took him five months to even really consume anything.
27:14
Speaker 2: So we started introducing salads at five months old, and
27:17
Speaker 2: it took him till ten months to eat anything. So
27:19
Speaker 2: he was solely reliant on breastwork to fill them, which
27:21
Speaker 2: was a real strain on me and it was a
27:23
Speaker 2: real concern that he wasn't potentially ever going to eat.
27:27
Speaker 2: But again he just suddenly turned a corner with that
27:29
Speaker 2: and now just absolutely loves food. But we're just quite
27:31
Speaker 2: mindful of what we give him. Yeah, so it's just
27:34
Speaker 2: going to be an ongoing journey and lesson and who
27:37
Speaker 2: knows if he's going to need further surgeries or whether
27:40
Speaker 2: he's going to have entricholitis multiple more times. I do
27:43
Speaker 2: feel like we're through the worst of it, touch Wood.
27:45
Speaker 2: You know, he's fourteen months now. I think that first
27:47
Speaker 2: year is the hardest, and I know that they often
27:50
Speaker 2: say that, you know, the first two to three are
27:52
Speaker 2: quite tricky, and I'm sure they'll be ongoing challenges, especially
27:55
Speaker 2: when we get to toilet training age and beyond. But
27:59
Speaker 2: at this stage, prognosism and his current you know, daily
28:04
Speaker 2: life is rather normal. And yeah, he's just a really happy,
28:08
Speaker 2: thriving boy at the stage. So yeah, that's where we're
28:12
Speaker 2: at now.
28:13
Speaker 1: That's brilliant. That's so good to hear that he's doing
28:17
Speaker 1: really well now because I do speak to a lot
28:19
Speaker 1: of people and they are going through very similar stages
28:23
Speaker 1: to what you've been through. And to know that it's
28:28
Speaker 1: that light at the end of the tunnel, isn't it.
28:30
Speaker 1: It's to know that, you know, we're never going to
28:33
Speaker 1: sit here and say, you know, in five months, eight months,
28:36
Speaker 1: ten months, everything's going to be fine. We can't say that.
28:40
Speaker 1: But to know that they're our people go through lots
28:43
Speaker 1: of different challenges, and boy, you've been through been through challenges.
28:49
Speaker 1: That there is light at the end of the tunnel
28:50
Speaker 1: is so reassuring and that's really really great to hear.
28:56
Speaker 1: I also did a few things you mentioned within them
29:00
Speaker 1: the first pooh. Obviously, lots of Hirshbrung's mums will know
29:06
Speaker 1: exactly what you mean by that, but I think a
29:11
Speaker 1: lot of people who haven't experienced Hirshbrungs will kind of
29:16
Speaker 1: have no idea really just how important that is to
29:23
Speaker 1: you and to your husband as well. Could you kind
29:26
Speaker 1: of I know you mentioned a little bit about getting
29:29
Speaker 1: the text from from your husband and saying he's be
29:32
Speaker 1: it's great and everything. Just can you explain sort of
29:36
Speaker 1: how that felt getting that message, because I really think
29:40
Speaker 1: this is that's a feeling that the only a Hirshbrung's
29:44
Speaker 1: parent would understand.
29:47
Speaker 2: Yeah, you're so right, and it was just this absolute elation.
29:51
Speaker 2: I think we as a society we just totally take
29:56
Speaker 2: for granted, you know, our bodily functions, especially down that engine.
30:00
Speaker 2: It's not something you generally talk about, especially as an adult.
30:04
Speaker 2: You know, pooh jokes and fight jecks, are funny when
30:06
Speaker 2: you're five or six and somewhat when you're a bit older.
30:09
Speaker 2: But yeah, I remember talking to a surgeon. Actually, and
30:12
Speaker 2: I'm slightly going off topic from your question, but I
30:14
Speaker 2: remember talking to a surgeon in the intensive care and
30:18
Speaker 2: the nique and she was from Switzerland and she was incredible,
30:22
Speaker 2: and we had some beautiful bedside conversations and she was
30:25
Speaker 2: there doing a washout one night, and she was saying,
30:27
Speaker 2: I don't dare tell my parents. I tell them I'm
30:30
Speaker 2: a surgeon, but I don't talk to them about what
30:32
Speaker 2: kind of surgeon. Because everyone really honors and celebrates brain
30:39
Speaker 2: surgeons and heart surgeons, but anything to do with bowel
30:43
Speaker 2: it's like, oh, you know, but it's if you can't pooh,
30:46
Speaker 2: you die. Like it's such a necessity, you know, even
30:51
Speaker 2: more so potentially than parts of your brain. So to
30:55
Speaker 2: have that first pooh was just unbelievable. I remember we
31:01
Speaker 2: were taking photos and I still celebrate now, you know,
31:03
Speaker 2: like he's fourteen months, he's stalling really well, but every
31:06
Speaker 2: time he does a pooh, I'm just so grateful, like, oh,
31:10
Speaker 2: look through it. I'll just be happy that he's going
31:13
Speaker 2: by himself. I remember we Yeah, we were taking photos
31:17
Speaker 2: on that first day. When he started stalling by himself,
31:19
Speaker 2: I kind of joked with my partner and with the
31:23
Speaker 2: surgeons and the rest of the team that I was
31:25
Speaker 2: going to have it framed and maybe even just somehow
31:28
Speaker 2: get that nappy like gold plated or made into some
31:31
Speaker 2: kind of trophy, or just put it on the wall somehow,
31:34
Speaker 2: like not obviously the actual pooh, but some kind of
31:37
Speaker 2: example of it on the wall, which we haven't done.
31:39
Speaker 2: But that was the feeling that I had, was this
31:42
Speaker 2: really needs this is a big, big mastone for him
31:44
Speaker 2: and for us as a family.
31:45
Speaker 1: Yeah, it was incredible, absolutely, so long as you don't
31:48
Speaker 1: have it as saved as your screensaver, I guess. Yeah,
31:54
Speaker 1: but that is really interesting to here, So I said,
31:58
Speaker 1: I think it is only something that the Hurstprung's parents
32:01
Speaker 1: really understand and that sort of that anxious wait for
32:06
Speaker 1: sort of yeah, waiting for them to go is just
32:11
Speaker 1: just so important. And then you mentioned another couple of
32:14
Speaker 1: things as well, botox that Jordan had a ten months.
32:19
Speaker 1: I do see a lot of people on various forums
32:23
Speaker 1: talk a lot about botox. Should we go for it,
32:25
Speaker 1: shouldn't we go for it? What's the benefits, what might happen,
32:29
Speaker 1: et cetera. What was your feeling to go sort of
32:32
Speaker 1: with botox at that time?
32:37
Speaker 2: Initially I wasn't for it. You can probably get an
32:40
Speaker 2: idea now that I'm kind of I feel like the
32:42
Speaker 2: word is crunchy. I feel like there's a lot of
32:45
Speaker 2: talk of this crunchy parent, which is like doing anything
32:49
Speaker 2: that isn't Western medicine in terms of like natural remedies
32:53
Speaker 2: or like woo woo or so I was very much like,
32:57
Speaker 2: maybe I can get some body work or do it
32:59
Speaker 2: all through my diet, or there's ways that I can
33:01
Speaker 2: do this without the intervention and need for Western medicine.
33:07
Speaker 2: So initially it was a no from me, But I
33:10
Speaker 2: think it was just the way that our life was,
33:13
Speaker 2: the way that his life was, the fact that we
33:14
Speaker 2: were doing these twice steaily washouts, the fact that the
33:17
Speaker 2: surgery went so well to start with, but we actually
33:21
Speaker 2: only got six weeks worth of good function, and that
33:26
Speaker 2: he was, you know, we were off the back of
33:28
Speaker 2: four episodes of Entricolitis, and I just thought, this is
33:31
Speaker 2: just relentless, and it was so you're just living on
33:37
Speaker 2: the edge at all times. You can't relax, You're constantly
33:40
Speaker 2: looking for symptoms and any little you know, cry or
33:44
Speaker 2: if he goes floppy in any way, like even if
33:48
Speaker 2: he's playing, or you know, you're just you can't relax,
33:50
Speaker 2: and your nervous system is just so highly strung, and
33:53
Speaker 2: we our lives, our quality of lives as a family,
33:56
Speaker 2: we were really struggling, I think, so we just thought
33:59
Speaker 2: it's actually worth a try. We spoke to the hospital,
34:03
Speaker 2: we read through the forums. Yeah, we had lots of
34:06
Speaker 2: backwards and forwards conversation, and at that point in time,
34:09
Speaker 2: we just said, Okay, let's give it a go, and
34:13
Speaker 2: hopefully you only need one round, which at this stage
34:15
Speaker 2: we have, which is fantastic. And I know that there
34:18
Speaker 2: are many families that it has completely changed their life
34:21
Speaker 2: and they go back regularly for top ups, and you know,
34:24
Speaker 2: they're so reliant on it now at this stage in
34:26
Speaker 2: their lives. The surgeon did say to us that there's
34:31
Speaker 2: many people in a similar boat where they're going through
34:34
Speaker 2: regular botox and top ups in this kind of age bracket.
34:39
Speaker 2: So between that like coming out of babyhood, going into toddlerhood,
34:44
Speaker 2: and by the time they hit two or three, generally
34:47
Speaker 2: they kind of just grow out of it. And that's
34:49
Speaker 2: what the surgeon said to me. So in my head
34:52
Speaker 2: after that first botox trial, I thought, Okay, this is
34:54
Speaker 2: our new path. I am more than willing to come
34:57
Speaker 2: back every three months or so if that's required to
35:00
Speaker 2: get these top ups, and that will be our journey
35:03
Speaker 2: up until he's three, and then hopefully by that point
35:05
Speaker 2: it will he will grow out of it and his
35:07
Speaker 2: system will be able to manage by itself. Yeah, and
35:11
Speaker 2: obviously we've had a much better outcome at this stage.
35:14
Speaker 2: So that that was our journey and that was our
35:16
Speaker 2: decision making when it came to botox.
35:19
Speaker 1: Absolutely. No, that's that's so good to hear as well.
35:22
Speaker 1: And when when people talk about journeys back and forth,
35:24
Speaker 1: I don't think, especially with me living in England, don't
35:27
Speaker 1: quite realize just how far the journeys are for you
35:30
Speaker 1: in Australia, that everything is Australia being that much bigger,
35:35
Speaker 1: but a heck of a lot bigger. The journeys are,
35:38
Speaker 1: you know, a lot further, And I guess from that sense,
35:43
Speaker 1: planning has to be sort of really on point, to
35:46
Speaker 1: the point where you know, you can't just forget something
35:49
Speaker 1: at home because it's forty five minutes away.
35:53
Speaker 2: Yeah, well we are. Actually for us, it's it's about
35:57
Speaker 2: an hour and a half in an hour and a
36:00
Speaker 2: half to two hours to the Melbourne Hospital to the
36:03
Speaker 2: Royal Children's which over here that's like around the corner.
36:08
Speaker 2: Where my partner and I actually met and lived together
36:11
Speaker 2: for four years is Ride up in the north of
36:14
Speaker 2: the country and the closest there was a local hospital
36:19
Speaker 2: there and we didn't give birth up there, so we
36:22
Speaker 2: moved and we are way more. Yeah, we've got a
36:26
Speaker 2: lot more access down here where we live. But if
36:28
Speaker 2: we were still up there, we spoke about this, my
36:30
Speaker 2: partner and I. If we were still up there and
36:32
Speaker 2: we had Jordan and we were living with Hirshbrun's, it
36:35
Speaker 2: would be a completely different story. We would have had
36:37
Speaker 2: to fly via air and it was a four hour
36:40
Speaker 2: flight to get from where we lived and where we
36:43
Speaker 2: met down to Perth. And even then, I think the
36:47
Speaker 2: care is somewhat less. It's still incredible, but it's somewhat
36:50
Speaker 2: less specialized. They don't have the same team as they
36:52
Speaker 2: do in Melbourne. So we're actually really lucky in terms
36:55
Speaker 2: of our location and access to the Children's definitely.
37:00
Speaker 1: And speaking of that, that specialist support as well. I
37:04
Speaker 1: know that your particular hospital that you've been sort of
37:09
Speaker 1: going back and forth to, they're looking at looking at
37:16
Speaker 1: changing the way that they're going to staff that I
37:21
Speaker 1: guess would be would be the the the term what
37:26
Speaker 1: what do you sort of understand is happening there at
37:28
Speaker 1: the moment?
37:30
Speaker 2: Yeah, yeah, absolutely right there, Tom, they're definitely restructuring the
37:34
Speaker 2: staffing of the team. So the specialist team that we're
37:38
Speaker 2: under is called the cp R S team and that
37:40
Speaker 2: stands for Color Rectal. Oh, I'm going to get this
37:44
Speaker 2: wrong now, CP Colorectal and Helvic Reconstruction Service. I'm pretty
37:50
Speaker 2: charl Colorectal and Pelvic Reconstruction Service. And within that team
37:57
Speaker 2: that that was created and formed due to a five
38:02
Speaker 2: million dollar funding program and that was a million dollars
38:07
Speaker 2: per year, and that funding actually ended at the end
38:10
Speaker 2: of twenty twenty four, so we got twelve months worth
38:14
Speaker 2: the last twelve months of that funding and that program
38:16
Speaker 2: we were able to access, which we didn't know at
38:19
Speaker 2: the time, so we had no idea that the funding
38:21
Speaker 2: was about to end, and therefore the team was going
38:24
Speaker 2: to be restructured. So from what I know, which isn't much.
38:29
Speaker 2: To be honest, the team has been not stood down,
38:35
Speaker 2: but the specialist nurses that we had access to are
38:38
Speaker 2: no longer working under that team. So the team itself,
38:41
Speaker 2: the CPS team at this stage, are no longer there.
38:46
Speaker 2: They are still working at the hospital, but under the
38:48
Speaker 2: broader umbrella of pediatrics, so it's a specialized children's hospital,
38:53
Speaker 2: but there's no longer a CPRS team, So that means
38:56
Speaker 2: anyone with HASHBUNGS or any other complex voll pelvic condition
39:02
Speaker 2: go under the general pediatric care rather than the specialized team.
39:06
Speaker 2: So the surgeons, there's two main surgeons, Sebastian King and
39:11
Speaker 2: Liz McLeod, and they are still there and operating as normal,
39:14
Speaker 2: so you either end up with you know, one or
39:17
Speaker 2: the other. We were under Liz's teing, so we still
39:20
Speaker 2: have Liz as a surgeon, but at this stage we
39:22
Speaker 2: don't need surgery, so we're not really in contact with
39:25
Speaker 2: her as such. But the specialized nurses Jess and Ceuzy
39:29
Speaker 2: that I mentioned earlier, they were just an absolute lifeline
39:32
Speaker 2: for us, and it meant that at any time if
39:34
Speaker 2: we had any question, anything pop up, anything unsure that
39:39
Speaker 2: we needed covering, we could just call them it was
39:41
Speaker 2: business hours, but we could just call them. They would
39:43
Speaker 2: always pick up the phone and we could just chat
39:45
Speaker 2: to them and we could or we could send an
39:47
Speaker 2: email out of ours and they would always get back
39:49
Speaker 2: to us as soon as they could. So that was
39:52
Speaker 2: just so pivotal for us, and we just felt so
39:55
Speaker 2: well cared for, particularly with those two nurses. There was
39:58
Speaker 2: also it's an hour health team, so there was also
40:01
Speaker 2: a psychologist on the team making sure that all the
40:05
Speaker 2: parents and families were well cared for in terms of
40:07
Speaker 2: their mental well being. That psychologist is no longer under
40:10
Speaker 2: that team. There was also a dietitian which we did utilize,
40:14
Speaker 2: and when Jordan was struggling with starting solids, we went
40:17
Speaker 2: and saw the dietitian vice and she again was a
40:21
Speaker 2: specialist for this team, and she is no longer working
40:24
Speaker 2: in that department. Yeah, so at this stage it basically
40:28
Speaker 2: doesn't exist other than the surgeons. So we are so
40:32
Speaker 2: grateful that we were able to access all of these
40:34
Speaker 2: people if we needed to, and we very much leaned
40:37
Speaker 2: on Justin Susie in that first twelve months. But now
40:41
Speaker 2: if there was a baby, you know, if Jordan was
40:43
Speaker 2: born now, he wouldn't have access to all of those people.
40:46
Speaker 2: He'd still be able to have the surgery with the
40:48
Speaker 2: specialist surgeons, but yeah, we wouldn't have the rest of
40:51
Speaker 2: the team around us. So I have noticed each time
40:55
Speaker 2: that I have gone back for a check up with
40:57
Speaker 2: the surgeon, we often get a registrar, and more recently
41:04
Speaker 2: it's been a different registrar each time, and then they
41:06
Speaker 2: end up knowing less and less about the history of
41:09
Speaker 2: each child, and there's just not that continuity of care,
41:12
Speaker 2: which is so important for anyone in the medical system
41:17
Speaker 2: and very much in birth. As I learned that if
41:19
Speaker 2: you've got that continuity of care, you just feel so
41:21
Speaker 2: much safer with your provider and it just has better
41:24
Speaker 2: outcomes if you've got this continuity of care, which we
41:27
Speaker 2: felt like we absolutely had last year. This year it
41:30
Speaker 2: feels a bit different, But at the stage we're at,
41:33
Speaker 2: it's not having a huge impact on us as a
41:37
Speaker 2: family because Jordan is thriving at this stage. But yeah,
41:40
Speaker 2: if there was a baby born, well, there are being
41:43
Speaker 2: multiple babies born that are being diagnosed with pshmans, but
41:45
Speaker 2: they might be having a slightly different journey in that
41:48
Speaker 2: hospital because of the funding no longer being there so
41:51
Speaker 2: there is a petition. It's only for anyone residence within Victoria,
41:57
Speaker 2: which is the state that Melbourne is in in Australia,
42:01
Speaker 2: so it's only if you're a Victorian resident that you
42:03
Speaker 2: can sign it. But it's an online petition, takes thirty
42:06
Speaker 2: seconds to sign. It needs ten thousand signatures and then
42:08
Speaker 2: it will go to Parliament and then they will revisit
42:11
Speaker 2: and reassess whether that particular team will be have access
42:15
Speaker 2: to funding again and be reinstated. So I think last
42:18
Speaker 2: time I looked that the petition was on about six
42:21
Speaker 2: and a half thousand signatures, so hopefully we get up
42:24
Speaker 2: to ten thousand. I think it's got to August this
42:25
Speaker 2: year to gain at least ten thousand, and then hopefully
42:29
Speaker 2: from there potentially they will reinstate some funding and get
42:33
Speaker 2: that team back up and running because it is absolutely
42:35
Speaker 2: so needed. And I think that there are from what
42:39
Speaker 2: I've heard, there are more and more hirsh Runs babies
42:42
Speaker 2: presenting in NICU and being diagnosed. So I don't know why,
42:48
Speaker 2: but that's what I've heard from each time I've been there,
42:51
Speaker 2: so it's just seems to be remaining hush Runs babies.
42:54
Speaker 2: So if anything that the team one hundred percent needs
42:57
Speaker 2: to be reinstated and yeah, put back in the hospital.
43:03
Speaker 1: Absolutely, And obviously if there's there's anything that you know
43:06
Speaker 1: that we can do as a podcast, we definitely will.
43:08
Speaker 1: We'll link the petition in the description below. And if
43:12
Speaker 1: anybody listening to this is from Victoria, then then please.
43:16
Speaker 1: I mean, it sounds from from what you've said, it
43:19
Speaker 1: sounds absolutely vital that that this that this this team
43:26
Speaker 1: stays because I think I know you've mentioned a couple
43:28
Speaker 1: of occupations there, the psychologists, dietitian, you know a few
43:35
Speaker 1: things that maybe when when I had Hirschbrungs, you know,
43:39
Speaker 1: those types of people wouldn't were not around. It was
43:41
Speaker 1: all done kind of physically, and okay, you've had to
43:43
Speaker 1: pull through surgery. Will just make sure that you're okay physically,
43:46
Speaker 1: But to look at people as a whole now and say, right, actually, okay,
43:52
Speaker 1: how is your social wellbeing? How is your emotional well being?
43:54
Speaker 1: How is your mental well being? Not just okay, have
43:58
Speaker 1: we done the surgery? Is everything fixed? Is? I can't
44:04
Speaker 1: speak strongly enough on that. I think that's so so
44:08
Speaker 1: important in and not just as you said, not just
44:12
Speaker 1: for the person going through the surgery for parents and
44:17
Speaker 1: carers as well, because they as you've mentioned that, I've
44:21
Speaker 1: spoken to your many many parents, you go through it
44:25
Speaker 1: as well, you really go through it, and to have
44:29
Speaker 1: that support, I think, I mean, it is vital, isn't it.
44:35
Speaker 2: Yeah. H, I think you've just said that so beautifully, Tom,
44:39
Speaker 2: and thank you for saying it the way that you did.
44:41
Speaker 2: With the mental social the well being is so important,
44:46
Speaker 2: like that is the core. And I think that we
44:48
Speaker 2: are now there's a lot more awareness around the kind
44:52
Speaker 2: of the link between our mind and our body, right
44:54
Speaker 2: and you know, like you said, in your experience when
44:59
Speaker 2: you were younger and going through the procedures, it was
45:02
Speaker 2: very much just a physical thing and let's fix the
45:05
Speaker 2: problem and then let's move on. Okay, everything's functioning in
45:08
Speaker 2: terms of bodily function, so great, you're all good to
45:11
Speaker 2: go off, you go back home. But I think that
45:14
Speaker 2: mental and emotional support is so important. And if you've
45:19
Speaker 2: got that as your foundation as well as obviously alongside
45:25
Speaker 2: that the physical stuff and the actual surgeries and procedures
45:29
Speaker 2: that are required, I think they just need to come
45:33
Speaker 2: hand in hand. And obviously prior to I don't know
45:36
Speaker 2: how long, but prior to that, especially in your case,
45:39
Speaker 2: it seemed like you didn't have access to that. So
45:42
Speaker 2: it's very very important, and I think, yeah, it needs
45:46
Speaker 2: to be revisited and mental wellbeing needs to be put
45:49
Speaker 2: at the fourfront for everyone, including, like you said, the families,
45:53
Speaker 2: the parents, the siblings, everyone that's impacted by this condition.
45:57
Speaker 1: Absolutely, And as we just sort of round towards the end,
46:00
Speaker 1: we've got a couple of minutes left here. In terms
46:04
Speaker 1: I know you've spoken a little bit about Jordan and
46:07
Speaker 1: how well he's getting on now, which is so so
46:09
Speaker 1: good to hear at fourteen months of age. In terms
46:13
Speaker 1: of sort of the near future, what do you see
46:19
Speaker 1: for Jordan.
46:22
Speaker 2: Well, I feel like we're only just coming into more
46:29
Speaker 2: of a normality. I think we were very much in
46:32
Speaker 2: survival mode, especially last year, you know, with what I've
46:35
Speaker 2: shared in the in and out of the hospital and
46:37
Speaker 2: the surprise curve balls of entrocolitis. So I think we're
46:42
Speaker 2: just coming out of the back end of that and
46:44
Speaker 2: obviously just hopeful that we are no longer needing to
46:47
Speaker 2: go back there for any surprise admissions or infections. And yeah,
46:52
Speaker 2: so just continuing to live as normally as we can.
46:56
Speaker 2: And continuing to see the specialist when we need to
47:01
Speaker 2: hopefully weaning off the ozma lax at some point. I
47:04
Speaker 2: think I've got an appointment actually this week with the
47:06
Speaker 2: surgeon or one of the surgeon's registrars. We'll see who
47:11
Speaker 2: is there on the day. But I think the next
47:12
Speaker 2: step is potentially going to try and reduce that osma
47:15
Speaker 2: lax and see how he goes and if it's hopefully,
47:20
Speaker 2: hopefully that's not a thread of the thing. I think
47:22
Speaker 2: in my mind, I would like him to not need that.
47:24
Speaker 2: I know it's not a big deal, but I would
47:28
Speaker 2: absolutely love for him to get off of that. But
47:31
Speaker 2: you know, just taking each day as it comes, and yeah,
47:35
Speaker 2: I guess the next step is as he grows more,
47:37
Speaker 2: is working towards what his bar function is going to
47:41
Speaker 2: look like and toilet learning, and then beyond that schooling
47:46
Speaker 2: and seeing you know, he's only one at this stage,
47:49
Speaker 2: but it'll come round quick and then he'll be kinder
47:52
Speaker 2: and school age or what would you call it their
47:55
Speaker 2: nursery perhaps, Yeah, So when he hits that three or
47:59
Speaker 2: four year old mark and those social interactions and seeing
48:04
Speaker 2: how well he goes with that and what his bowfunction
48:07
Speaker 2: will be like at that point, because we still actually
48:09
Speaker 2: have no idea whether he's going to have a normal
48:12
Speaker 2: functioning bow that he can fully control, or whether he's
48:14
Speaker 2: going to be constipated, or whether he's going to you know,
48:19
Speaker 2: have consistent accidents. Yeah, so we just don't know what
48:23
Speaker 2: that looks like. Yeah, and we just got to again
48:26
Speaker 2: just surrender to the journey and just trust him and
48:28
Speaker 2: trust the process, and just follow alongside him and guide
48:32
Speaker 2: him as best we can.
48:34
Speaker 1: Definitely, I know it goes without saying, but I'll say
48:36
Speaker 1: anyway that I do. I wish see you and Jordan
48:40
Speaker 1: and the rest of your family all the very very
48:43
Speaker 1: best of the future. And thank you so much for
48:46
Speaker 1: coming on and joining me today.
48:49
Speaker 2: Thanks so much, Tom, It's been an absolute pleasure to
48:51
Speaker 2: share my story. And you know, if one person listened
48:54
Speaker 2: to this and is somewhat inspired or relates to it,
48:57
Speaker 2: then you know, that's exactly why we are here. So
49:00
Speaker 2: I just want to say thank you to you for
49:02
Speaker 2: creating the podcast and having this resource out there boocause
49:05
Speaker 2: it's just such an amazing place to have all this
49:09
Speaker 2: information and for it to be free, and for you
49:11
Speaker 2: to give up your time to do this so thanks.
49:14
Speaker 1: Tom My Pleasure, Thank you for listening to the podcast.
49:20
Speaker 1: Find us on Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen
49:26
Speaker 1: to previous episodes on Spotify by searching Tom's Hirshbrung's podcast