Ari's Transplant Story

There is something quite surreal about hearing the news that your 3 month old's liver is failing and he will require a transplant to survive. We received the call that would change our lives when he was 9 months old, on 2 May 2020,  peak pandemic in the first wave lockdown. This is our story.

Please consider registering to be a donor (Australia) at donate life. It can completely change someone's life, it changed ours and we're eternally grateful.

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Transcript

Tara Ladd: 0:00

Just a heads up if you've got little ears around this podcast contains some swearing. Hi, you're listening to the Word V, a straight shooter podcast that generates real conversations about the systemic issues surrounding working women motherhood, business ownership, and society as a whole. I'm your host, Tara Ladd, owner of brand design agency, your one and only mother of two boys, and a champion of working in a balanced society. Welcome, welcome to this week's episode, this one may get a little bit emotional. I'm going to be talking about my firstborn son iraes liver transplant. So the reason that I've put it on this week is because may 3 marks the date that he had his transplant. So I like to call it a liver Versary or anyone that has had a liver transplant seems to call it that as well. And it's to mark I guess he's it's almost like a new birthday. So it's like a time in our lives that we'd like to celebrate because it's it marks the after. So basically, I know that I talk about him a lot. And there's good reason for it. Because I didn't know much about what Ari had, or you know, I didn't know much about transplant, it just seems like something that you see in the movies. And I'll debunk some of those things in a minute. But pretty much it was it's more or less the journey that we've been on where we're at now. And what I guess what he has to look forward to for the rest of his life. So let me kick things off with I guess the pregnancy. So with our his pregnancy, my pregnancy with Ari I should say there was it was like seamless, absolute, blissful pregnancy. No. Like no dramas at all. I remember being pregnant at the same time as a few a few of my friends and they were having issues and yeah, my pregnancy was just amazing. I seem like just went through through without any issues at all. And it was a common joke I kept having with my friends is that something's going to happen after and I don't know whether that was just my intuition knowing that something was going to happen or whether I just jinx myself but yeah, he's he's pregnancy with my pregnancy with it was really good. And I mean, if I did if all pregnancies were like that, we'd be all be falling pregnant a lot, a lot, a lot quicker and a lot more often, I reckon. But yeah, you know, I had high energy levels. I was obviously firstborn to you know, no other kids to be running around after but the pregnancy was seamless. So when I went into labour you know, we were really excited. He was a perfectly born healthy baby is 3.73 kilos. He was born in just shy of four hours in the bath with no drugs. Not that I'm against drugs. I absolutely had drugs for my second baby. But yeah, he was just a really good pregnancy and a really good seamless birth. So there was no there was no markers that anything was wrong at all, or ultrasounds were perfect. All measurements were perfect him at birth, and his markers at birth were perfect. Even his bilirubin levels which I'll talk about soon, which is a jaundice marker. were perfect. So after we had him, of I had him, we were at home I was part of the midwifery programme, which is when your midwife comes around to your house for the first few weeks post birth and just checks in on you to make sure that everything's okay. And in the first week, we had no issues breastfeeding what I seemed to think that he was getting enough milk and I thought I might have had some breastfeeding issues because I lost quite a bit of weight in the first week. So he dropped I think 700 grammes if I remember correctly, all I remember it was just at the very, very end of the 10% You know, it's 10% Either way in the first week, um Yeah, he lost at the 10%. So he was still within the normal range, but just at the higher end of the normal range. So we were just keeping an eye on that. And then, you know, we will kind of like in the next week, he should put more weight on. He's just finding his rhythm, blah, blah, blah. In the next week, he only put on 40 g. And at this stage, we were like, Oh, this isn't good. Something's not right. You know, and then we all put it down to the fact that maybe it was breastfeeding issues. And I saw a lactation consultant. And, you know, he seemed to watch perfectly and there was no issues there. And I was, you know, producing enough milk, but it was just something just wasn't right. So my midwife was amazing. Shout out to Nicole. She called up all she just let me know that maybe I should just go get him checked over at the doctor and to request a urine sample, because funny that I just spent a week in hospital with my second born with a urinary tract infection that was undiagnosed. But anyway, she said with one of her previous babies that there was an undiagnosed UTI. And it could be that as to what is stopping him from feeding because she was watching me failure was latching, he was doing all the things you should be doing. And the urine sample came back, that he was all fine. So the week off, were a couple of weeks where it was, it was at three weeks. So three weeks, I went to the doctor and just to get him weighed again, because at this stage, we were making sure that we were weighing in regularly to make sure that things were going okay. And my GP picked up that he looked a little bit yellow. Now, most people know when a baby has jaundice, but my baby had this flaming red hair mop of red hair. And it Like honestly, it looked like he's complexion, he did not look yellow. He looked fine. I have pictures to show it. And she picked up some a slight yellow ring around his belly button. And I remember going in I don't know why. But my gut instinct said, right then that something wasn't right. And she asked if she could take Bloods? And I was like, yes, absolutely. I'm not one of these mothers that was like, oh, no, my baby. And I was like, do what you need to do. So we went and got some bloods done. And they take bloods through he'll, when you're that little he was at the time. Yeah, just shy of three weeks. And we went into getting all checked out. And you know, they weighed him. And I remember being in this the nursing room where they usually do, you know, the examination on kids and stuff. And there was two brothers in there with babies and they were like, it's okay, my kid had jaundice, and blah, blah, blah, they just stick them on the lights. And I just remember being in my head going, I know that they're trying to, like, reassure me right now, but Shut up, you have no idea what's going on. And sometimes I find that toxic positivity is almost worse than not giving advice at all. Because you're trying to reassure the person that everything's okay. And you're putting them in that mindset. And then when you do get bad news, it's almost like it's unexpected. But anyway, that was where my head was at, right? I'm always like, and people will disagree with me, but I'm always like, prepare for the worst and you won't have any any surprises. So the next day, you know, everything was fine bloods went off. I went to the cafe with my mom. But you gotta remember, this is three weeks, I'm still dishevelled, you know, mom comes over, I'm still sitting in bed. Just standard postpartum stuff. And you know, I'm still bleeding from the baby. This is how recent it's I'm still bleeding from stitches from the baby. And we go to the cafe, it's about 10 o'clock. Anyway, so with my mum, my sister, and my sister gets a phone call. And it's my husband Ryan and, and she has a bit of a shocked look on my face on her face. And she looks at me and she said, You need to call Ryan. The the doctors been trying to call you and my heart dropped and I was like, What do you mean? And Ryan said don't bother calling he's on the phone to my sister. So I don't bother calling me back called the doctor straightaway. So, by now I'm like, I'm not panicking, but I'm like, okay, like, doctors don't usually call you unless there's something wrong. Right. So I, I called the doctor and the doctor said to me, you need to go to the IDI for an emergency paediatric review. Like, what the fuck? And like, Ryan's just gone back to work that week, right? Like he had two weeks off. And we had three weeks off, he had three weeks off. And we're like, day three into that week off. And I Mike, like, what do I do? Mums? Like, don't worry. I'll come with you. And then my sister went with my niece and mum came with me to the hospital. And thank God because I don't know how I would have handled that situation if I had to do that alone. But like, I mean, I'm still calm and collected. I'm not I'm not over the top, like, you know, as I said, don't, I don't worry about things unless they happened. But obviously, I was deeply concerned. So I went home. Classic case of not knowing anything about the hospital system at the time, you know, pack the bag, got to the hospital. And they started to do the first lot of Bloods. And all the questions come at me. Are you breastfeeding? Is he taking any milk? Has he been sick? Where are you sick during pregnancy? I'm like, oh, you know, and then obviously, you start recounting everything back through pregnancy on my arm. Yeah, I was. I was sick. 3032 where they're like, that's fine. You know, blah, blah, blah. They were concerned more in the 20 week each time like, well, you know, when you're developing the organs and stuff. But yeah, they were just like, you know, like an interrogation. But obviously, concern interrogation. They're not trying to make me feel shocked. And they're trying to reassure me that everything is okay. But I was just like, really overwhelmed. And you know, you're in the hospital, and there's big, bright lights. And I mean, every time I go to the hospital now, I'm just always really oriented, who's in there with a newborn. And even just two months ago, when I was in there with my second born for what seemed to be gastro, there was a new mom in there with her baby, and she was asking for hot water. And I'm just like, here have my thermos full of boiling water. She's like, you're prepared. I'm like, You have no idea. Just having that support around you is so crucial, because you just are so you're just in this state of shock. But so yeah, all the questions come at me. And I remember that conveniently that night, there was a doctor on that had come from Randwick kids who had worked at Westmead kids, so he was a specialist at the paediatric hospital. It was just on it. My local that night. And I always put it down to just things all lined up for us because we had the right people at the right time. That all just seemed everything just seemed to work for us, you know. And his name was Josh and he was a redhead and I remember laughing with him because he was really had such a good bedside manner and he was just trying to just keep me calm and was joking because he was a redhead and talking about Ari and obviously our is our is that kid you know, everyone's stuck the you cannot get anywhere with a redheaded baby. It's like oh my god, look at his hair. And it was just like, everywhere we went but like little pineapple head. So yeah, we're, we're in the hospital by this stage. So this is about 1010 o'clock but hospital about 11. And then I was there for ages. And by this stage, I'm like running out of will I was kind of breastfeeding but at this stage, we had him on formula because he just wasn't eating anything. And I started to run out of formula so I was getting really concerned and then it will the hospital had some but I didn't know about this at the time. But you're down in the IDI. They don't really have too many things in the IDI. It's not to eat get up into the ward. So you know, my baby is getting hungry. I'm running out of nappies. I'm hungry. I've been there since 11 o'clock, my mom had to go, Ryan did the switchover straight from the city. Because I mean, he didn't think anything was severely wrong. Like we didn't know anything was wrong. So I told him to stay work because there's no point coming home for nothing. And it was right he didn't need to. So mom was there it was fine. So six o'clock comes around comes in mom swaps with him and Brian brings all the extra shit that we need. And luckily, we just didn't have another child at the time because that would have just been chaos. But I always say that things happened. Just at As they needed to. Anyway, so we were in, in the IDI. And then they told us that they picked up some markers in his blood and they were running tests. And the tests obviously weren't going to come back for a couple of days and all this stuff, and they were transferring us to the ward. The best thing about our local is that all the rooms are single. So I mean, sitting in a dorm room, or a dorm bed is just not great when you're trying to deal with something so emotionally heavy, you've got people in there with things that I know that other people are dealing with stuff like, you know, bronchitis and stuff, which can be disgusting, but to deal when you're looking down the barrel of something like this, and they'd like milder cases around, it's really traumatic. But so I was we were in our own room, and they're running Bloods and you know, we're in there for three days. And second day, they wanted us to go and get an ultrasound. So we knew at this stage that something wasn't right. And he's got something wasn't right. And they were doing a ultrasound on his liver. Josh came in and told us that it could be one of three things. One could be an infection. The other could be a marker of what they consider to be biliary, atresia, biliary atresia. It's such a hard word to say. And the other was an unknown cause. The prior to that Ryan work being in workers comp, knew how to read medical reports actually saw on one of the papers that suspected biliary atresia. And he came back and told me that that's what it says, obviously, you crack your phone out, and you start reading about what it is. Were not wanting to jump to conclusions, but I personally wanted to prepare for something that was going to be heavy. So I, anyone that knows me knows that I'm not one of these shallow researchers. I am, dive onto Google Scholar read every single medical journal that you can find on said subject and find all case studies and the most recent, you know, results, and I was right into it, right. I'm like, I actually know how to research I was right in there. So I just relate that back to Ryan, I'm like this, this is what it is. And for those that don't know, it is basically a treasure is a blockage and it's a cause. In biliary atresia, it's a cause of the bile ducts, which lead to your small intestines from your liver, which pass the bile, the bile breaks down fat. So when the baby eats, it breaks down fat, it puts the good fat into the body, and obviously, you know, does what it needs to do. The problem was with biliary atresia is that the bile ducts can be blocked, partially blocked or fully blocked. And that causes scar tissue within the liver. And the bile builds up, the liver gets scar tissue, it stops functioning, you go into liver failure. The problem with that is when the liver starts to become overworked. other organs tend to take over specifically the spleen, which I never knew did anything until this and I was like I said, that's what it does. It's basically like a second liver kinda. And then obviously, the liver the spleen starts to get overworked. So the problem is that if you leave something like this for too long, you can go into multiple organ failure, and have a lot of issues down the track. So we obviously waited until the doctor came in, Josh came in, let us know what was going on, told us that this is something probably a little bit more serious, and that the ultrasound couldn't detect anything because his bile ducts are so small. We're talking less than a millimetre at this age. So hence why nothing was picked up on an ultrasound. So we don't know if this happened pre birth or post birth. But going by the markers, it was post birth. And they say that most cases of biliary atresia happen two weeks post birth. And it's assuming that you've probably the baby's out of the mom and the mom kind of keeps the baby healthy until he has to, you know, go for gold on his own. So anyway, they told us that they were going to need to transfer us to Westmead. For some reason, we always end up in hospital on a weekend so it ended up being Thursday. We went in there, this was Sunday, and we were made. It's August, right so it's Winter in Australia. There's like, bronchitis, which is for kids, by the way. I didn't say that wrong. From Yeah. Everywhere. And they didn't want him to get sick because he was so little and hadn't had his vaccines yet, right. So they sent us home and told us that we would be admitted at Westmead kids on Wednesday because we needed to undergo what was called the decider scan. Because they couldn't, they did what all they could at the local and now it was a specialist cause and something that we needed to be transferred for. So at this stage, I'm like, fuck. Now we go into the Kids Hospital. So something, something's not right. They can't fix this local. So I'm reading all this stuff. Like I remember, I remember distinctively the days sitting in the corner in that orange chair, writing the first Facebook post about what just happened, and what we were expecting. And I sat there with my husband, with Ryan, and I was like, do we post about this? And he goes, Oh, no, he's not. He's not the type to do stuff like that. But what I didn't look like I didn't want to look like I was like, you know, that person that was wanting attention. But I wanted to do a mass. Not a shout out. But I guess an announcement to let people know what we were dealing with more for boundary purposes. It was just distinctively to let people know that we were going through something emotionally traumatic. And we didn't want anyone to be messaging us at that time. And I say that because I mean, you've just had a baby, right? Like, it's only three and a half weeks. Everyone messages you. How are you going? Are you okay? And the last thing that I wanted to do was literally answer every single one of those messages with Well, no, we're at hospital Oh, no, we can't do this. And not you know, and I just wasn't I just didn't want to do that. I'm very good with my boundaries. So I just put a post up and said, Look, this is what's happened. We don't know what's going to happen. I will keep everyone informed. For now, just please don't message me or us. And obviously, everyone was like, Oh, I hope you're okay, blah, blah, blah. But at the end, like it's this real weird feeling, right? It's like this out of body experience that you're kind of going through? Because and I mean, I laugh because it's like, how stupid does it sound to think that when you go to hospital, you're like, Man, I hope it's an infection. Like when what stage do you left you hope your child has an infection, because you know that the letter is just worse, right? So we go home, they give us all these medications that we have to give him and tell us to come back to the hospital on the Wednesday, we're taking his baby home on Sunday, we're going to be home for three days. And they said that the hospital will call you to let you know what's going on. And basically, yeah, so like, What the fuck? I'm like, I'm at home. I'm like, is it easy? Okay, like is in there? Like nothing's gonna happen. It's fine blah blah. So we'd like you. It's just this most surreal feeling so we get home Um, now we've got to give him medication right through a syringe. I've never given a baby medication through a syringe before in my life obviously. So the first the first time that I did it just a tip for people that haven't given their newborns or babies medication before he moved as I was about to put the medication in his mouth so usually you put it in the pocket of their cheek right? And at little bits at a time and he had a dummy which is perfect so we suck the dummy and take the medication. But he moved as I was putting it in and I shot it straight down his throat and he bloody choked on it and his lips went blue and I was like fuck I'm gonna kill him before he gets to the bloody Kids Hospital. I've just remembered that distinct feeling and before like we before we had Ari I made my husband and I go to a you know CPR kids course before to know what we needed to do. Fucking thank God I did that. I mean natural reaction and probably done the right thing but they I remember them distinctively saying if a baby's choking on something on them, flip them over, use the palm of your hand and hit them three times in the back really hard like an up in and upwards motion. I don't know if that's changed now. Just FYI. But at the time, that was what went And to do so straightaway now, I thought I was going to be that panicky parent, I thought that Ryan was going to be our cool calm collected and anyone that knows both of us would have assumed the same. But it was the absolute Stark opposite. Ryan was freaking out and I was cool, calm, collected absolutely straightaway, flipped him over, bashed him three times got it out and got it out of him and he was fine. Now I'm not saying I sat there super calm. I was just like, and then obviously, the panic happened after I'd like, fixed it. But I was just like, Okay, so in a situation, it seems I'm going to be that person now. It's like, the things you learn in anyway. So I remember being at home, Ryan's going back to work. Was he working from home? I can't remember distinctively what had happened. But yeah, so I got the call from the hospital. And it was one of our living nurses that we would become very, very comfortable with over the time. And her name was Janine. And I remember she was just so articulate on the phone, and she was very supportive. And it wasn't just, oh, you've got to come to the hospital next week. It was just Are you okay? And how are you going? And it was just like, what was going on? So she told us what we needed to do where we needed to be, I've still got the note that she gave me my phone and told us, you know, when we needed to go. So Wednesday rocks up, we've packed our bags to go stay at the hospital, not really sure how long we're going to be there for. They've given us the overview that we may be there for a few weeks, depending on the results. So we spoke to two doctors, you know, they came in and one of the surgeons came in Dr. Albert, Sean, who we will come to know and love. As we go on. He came in with a pen and paper, and he said this is what we're going to do. And actually prior to that, we did the decider scan. So we went in we did the decider scan, they put the dye in and then we had to wait to see how that drained. So if it drained, there was no blockage. If it partially drained, there was obviously a partial blockage. And if it didn't drain at all, there was an issue. So we had the decider scan, which is this huge, big like almost like MRI thing, they struck them down. I have a photo. He was so tiny. And yeah, they basically run the dye through and we got the results back that nothing had come through. So there was a full blockage. At this stage, I'd already prepared for what would potentially be a liver transplant. So my head was already in that space. So anything that was less severe than a liver transplant was a winner in my eyes, but I was mentally at we're going to need a liver transplant. This from the studies that I read, it was that the surgery that I was going to need to have was the highest failure rate in paediatric surgeries at 30% success rate. I was like mad. So I'll come back to those statistics in a minute. But Dr. Albert schoon came in and like sat down with me. And he took out this scrappy bit of paper from his pocket and started to draw me an example of what was going to happen. So we drew and I was like, Sky speaks my language, you know, designer visual person absolutely nailed it. Obviously done this many times before, told me the differences between partially blocked and fully blocked, but they were going to check by doing a liver biopsy. So he was booked in for surgery on the Friday. So we went in on Wednesday. They told us he was booked in for surgery on Friday. So I'd already assumed that there was something wrong. The decider scan was just telling us the severity of how wrong and that was, you know. So the first part of the surgery would be that a biopsy to see how much scarring was in the tissue what was going on. And then if it was bad, they were going to proceed with with what was called a quasi procedure, which is the highest failure rate in paediatric history where they basically cut your small intestine and attach it directly to your liver so that your bile can drain straight down through. Now what that does is it eliminates the sphincter one of the sphincters at the base which stops gastric fluids coming back up. So they try and extend it really long so that there isn't like that, that doesn't happen. Because if that does happen, it can cause infection. So this is something that we, that will occur later on. But that's just the big, infamous informative thing that they gave us. And then yeah, so basically, we're just sitting here like, it's like, so surreal, right? Like, you just, you've just had, like, I'm still, like, in maternity clothes. I'm just like, how is this happening right now? Like, dawdling down, like, and I don't really know how I mentally manage that. But you are just in fight or flight, absolute fight or flight, right. So the 30th of August, our is exactly four weeks old. And they take him in to have this procedure. I remember it was Ryan's brother's birthday, the day before my mom's I was like, you know, this is just a bit nuts. So. Yeah. Ryan and I like also trying to work mind you, Ryan was anyway. Still ran a business. So some monitoring stuff. Yeah, he, they called us at 10 o'clock, or whatever it was. And they said, Yeah, it's a full blockage. We're going in to do the procedure. So All right. Cool. So the procedure happen. Now, first, I actually forgot to tell you something incredibly crucial. So when there's something wrong with the liver, the poo is white. Now, as a designer, I'm all like, that's not what that is, like super pale green. No, but it's like there is just no pigment to it. And the colour change in his stalls happened when, you know, when we switch to formula because he wasn't eating, he was failing to thrive. So I assumed that it was a formula swap. So this is I'm so hell bent on getting some kind of poo chart out into lunch. I know that some councils do it, some hospitals do it. But this needs to be like a mandatory thing. Because like poo is such a good indicator. And as I found out with my second with these, you know, cow's milk allergy, that is such a good indicator of problems that are happening with the children. So that was a huge indicator. So what happened was, obviously, he had this surgery, and we weren't feeding him because you know, it's all to do with your digestive system. You can't go putting food into something that's just been replumbed. So he's put on, he was put on an NG, which is the food tube through nose. And he started to be fed through that and smallest amounts at a time. I can't even remember what he was on. But it was so minuscule. And we had to wait. So now there's this tiny little baby, we go and see him in the ICU. He's like, like, He's so small. And there's tubes all through him. And he's on this machine. And I have a picture of it. It's just one of my favourite pictures. And I'm just like, I've got friends at home that are having kids right now or, you know, that have just had kids and this they're sharing these beautiful moments. And this is where we are like it was just so don't know, polar opposite. The juxtaposition was just insane. So anyway, what to what was to follow is that we would be in hospital for 10 days post, and we basically had to do what they called a stool gallery. And we had to watch how his poo changed colour over that over those next few days. And you know, the consistency of it. But I should also go back prior to the surgery, night, like obviously, I'm freaking out the night before surgery. The nurses and doctors are like, amazing. I had this awesome, awesome nurse. His name's Mark, and he was so good. It's just the best so flamboyant OTT. Like I wanted to take him home. He was so amazing. But His personality was what I needed. So I remember it being 230 in the morning, and another lady down the road is obviously hospital mom, her kid had Crohn's disease, and I'm like running around trying to get our effects so they didn't wake anyone up and she's like, don't even worry. He's a baby. These kids understand. And I was like, I still remember those words and it's just Crazy how much you don't know you need to hear that type of stuff at the time. But, yes, the nurse came in. And he's like, obviously heard, are you crying? He's like, Well, now that I know that you're awake, and he opens the curtains, he goes, How are you feeling? And I was like, oh my god, this is so awesome. Am I? Look, I'm a bit overwhelmed and a little bit, I guess I think I'm in shock. He goes, that's absolutely normal. But I wanted to give you some education, because ways to deal with things are better when you're informed, and I was like, This guy is just the bomb. So when he comes with these fact sheets at 230 in the morning, this is what's going to happen. This is what billary treasurer is, this is this and this and he gave me all these things that aren't that I could read to figure out, you know, what was going on what was about to happen, what I could do moving forward. And it was just, he was just fucking awesome. I'll tell like, the relationships that we built with our nurses from both hospitals are like, amazing. So one of the most crucial things that he said to me, and I actually meant to bring this up in a conversation with Shani, on dealing with the diagnosis the other week, but one of the biggest things that he said, was don't leave the diagnosis. And I was like, What do you mean, he said, so many parents leave the diagnosis, their child is this, my child can't do this, because of this, and their whole life centralises around their identity on this problem or this cause this disability or this illness? And I was like, That is such an important thing to know. And he said you will miss all of the key milestones because you'll be too fixated on the problem. He goes you will miss his first smile. You will miss this and this actually his first smile was the morning we went into Westmead I have it on camera. Three weeks old, bustin out smiles heartthrob from from DDOT and that was probably one of the biggest things that like drew all the attention is little redhead that was busting out this smile they just loved him all the nurses just came in just to say hi so yeah, we had to do this anyway going back we had to do this pool gallery which remains disgusting but you know, we've got these specimen jars all lined up and T shirt all in them and we slowly started to notice the colour change so the pigment was coming back in and that is an amazing sign because it means that it's working you know the bile is breaking down the bowels the bile is so the reason that you're the pigment wasn't there was because of the buildup of bilirubin, which is what causes jaundice. So he had pathological jaundice which means that usually when you have jaundice that will go in your body and then come out through through stool right your body digestive system gets it bile breaks it down, it goes out through stools with Ari because there was no bile breaking it down. It was just going back into his body and bilirubin back into the body is based essentially poison. So he was poisoning his body. So we needed to get this out. So out it gets started to come tenfold through his stalls and started to eat better start to go the toilet and his yellow colouring that had obviously started to build up. Just started to go away. So look, I'm aware that regardless of this being successful that it can still fail. So what they said, so the whole 30% I was talking about was that 30% is instant failure. 30% is partial failure. So failure. So they it works for a little bit and then it stops. And that can be any time. But they said sometimes caseloads last until the adolescent stage and then they need to transplant then or it works and they thrive off of it for the rest of their life. And obviously medications needed as well. So look, there's good and bad things to both. Obviously you're not immunocompromised when you have the CAS if you haven't, you don't need to take immunosuppressant drugs. So that's a benefit. The ship thing I found about that was that every time you hit a 38 temp, we needed to go to hospital. I mean you can hit a 38 temps so easily. And that was because of a risk of colon Giada. So Colin giantess was obviously what I was talking about before it's an issue caused caused in the liver. And yeah, basically It can cause the cat's eye to fail. So, three months in we were at our friend's wedding at Wollongong and first night out as parents, and we got home our my father in law, who is absolutely amazing. was minding Ari and laying on him and I said he's a bit hot. Anyway, so Gary went home and I was like, he's just a bit hot. So I did his tap, and he was like, 38 Seven. I was like, fuck. So we had to take him to the hospital. So I've just come back from this wedding, it's around midnight. Probably less than that. Actually. It was about 11. I've had like three drinks were in the emergency. Thank God COVID hadn't happened yet because it would have been the whole one parent thing but both of us were able to be in there. So both of us were in the IDI. And then we were transferred to the ward at like 4am the fucking ate it when that happens. It's like such a long night and it's so emotionally draining. So yeah, if it's 4am, we've got the bags packed and hospital again. And this time, he's all plugged up to the machines and we have to start the first round of IV antibiotics. So what happens when you go to hospital transplant, pre transplant post transplant is that you need to be put on 48 hour antibiotics, IV antibiotics at the highest like the highest antibiotic, which will kill any bacterial infection essentially. So regardless, if you don't know your viruses versus you your bacterial infections, a virus you cannot use antibiotics for it doesn't work. Viruses need vaccines? If so, anyone that takes anybody accident, no, I wouldn't take a vaccine. But anyway, that's my two cents. Yeah, so we're on. We're on this high dose of antibiotics because what happens if as if it is bacterial meningitis, it will kill it. But in our case, the cast I failed. So what we started to notice in the following weeks after that was that Ari's bilirubin levels had started to elevate. His liver functioning had started to elevate. And I had actually booked this trip away for a business leg creative session in Daylesford with a couple of my amazing best buds, and ours and hospitals, like I was gonna have to cancel it a flights booked and he was like, ours, like, everyone's like, you've got to go. And then I'm like, I'm just like, What the hell? Like, how can I do this? I felt so shit. But I needed to do this for the progression of my business as well. Because the reason I started a business was to be successful for my kids so that they could have good lives this fucking vicious circle, right? Anyway. So we went, I went with immense guilt. I remember standing at the airport, getting coffee, and this lady talking to her friends going, I've had to leave my daughter at home, blah, blah, blah, you know, she's only just turned one. And unlike lady, I've just left my three month old in a hospital bed with a failed car, sigh. That is nothing. And then I'm just sitting there thinking how much of a ship Mama was January, you just that just never stops? It probably was extremely needed. Because I went on the trip. I tried to forget what was happening. I knew that my husband was there. He was telling me what was going on. And I came back in a really good mindset and was able to deal with, you know, what was about to happen. So this is October or early November 2020. Or 2019. Q The bushfires. So this stage now we get home and it's just ravishing. Right? Like there's just Australia's on fire. And I'm like, he's first summer is like smoke city. It's just like, wow, this is insane. Like it was just, there's just so much stuff going on in the world like blah, blah, blah. And we were all right for a while, right, like so we knew we go to the hospital. When you have something like this, you're always checked. It's a constant, constant process. So we started off being there for three weeks when we first had done and it's every six weeks and then it's every three months. But you know, it was always six weeks for us. We never got to the three month stage until post transplant it was always three or six weeks. So checking blood loads every time so, you know, this is what we mean we are so, just desensitised. Like we hate watching him get bloods done, but we were just like everyone talking about the kidney and blood tests, we were there every six weeks bloodstone bloodstone bloodstone cannulas in. Like it's just sociate. And like to the point where now I'm just like to stick a needle in my arm just take bloodwork you need, like I cannot even winch about getting this pissy little needle right now. Like, you have to be strong for your kids. So your time went on, and it was it all seemed to be pretty, right. But his elevation levels just kept going up and going up and going up. And we had a hospital stay, I think in December IV antibiotics couple of days in ended up being a virus, so it was fine, nothing happened, we left. And in February, they called us in for a the workup the liver transplant workup. So what that basically entails is you spend five days to a week in hospital having basically every single test you can think of to make sure that there are no other underlying causes. Where something like a liver transplant could trigger something else happening. So the check I mean at the time he didn't have any teeth, but yeah, they check. They check teeth, they check, like hot, he had a heart murmur when he was born. So they did double check that but you know, it's still there, but nothing, it's nothing. So we're always we always get that checked every now and then. So and then I was like, they made a bit of a deal about that. So I was just like, Fuck if we have another another thing added to this like, you know, lever and a heart like I was. Yeah, it was just a bit full on anyway. So the echo came back fine. It was there was nothing sinister happening there. That to check. Yeah, all of I can't even remember now there was just so many people that we had to speak to council worker counsellor, social workers. That's what I'm talking about council workers. Yeah, just bringing nobody trading No, it's yeah, the social workers and I mean, nurses and more Bloods and just checking literally every mark are seeing every bloody part of the hospital but what do you call them? OTs physiotherapist and things like that. Just checking his steady state right. Sorry, sorry, winning at nine months to get his transplant but seven months. This is when he had his workup. So his stomach is massive. Right. So he's liver and his spleen as expected his liver. As mentioned before it was it was enlarged. So his spleen was enlarged because of his liver. So you know, his belly is massive. He's this tiny little thing. He's got this huge belly cutest kid though. And now remember to saying like the nurses saying are you wait till these post transplant like this isn't what he's going to look like? And I'm like, Yeah, but Ryan skinny. And anyone that knows. Doesn't know Ryan. He's like, long distance runner absolutely built like because a gazelle, like so, so skinny. And they're like, No, and I could tell that they would like they're in denial. But we've run into now we're just we're ignorant. Thankfully, blissfully ignorant. Anyway, so yeah, we had all these conversations. And I will never forget the ethicist that came in to speak to us, because then the stuff that they need to hook you up to when you have a transplant is in tents. So he came in, he was the one we were waiting on for ages. I remember being so well, not annoyed, but just overwhelmed that we were having to wait for so long to see this an ethicist. And when he came in, he was probably the best person that we saw. And his bedside manner was amazing. So he came in. And at this stage, we've got like a seven month old, right, like so he's trying to move around, not not successfully. He wasn't even setting up at this stage. But he could roll right so he could roll and drag himself like us. Yeah, so we had all these like mats on the ground that the OT gave us and we're just letting him roll around to move around on the ground. And in comes in ethicist with his cap on and he sits on the ground with us, right, so sits on the ground, just gets eye to eye with us and has a really good conversation. It starts talking about all of the things that they're going to do. So you know, the central line that goes through the main arteries, all of the places that they're going to be inserting the pain medications that are involved, how they know when they're in pain, the markers of how they do things, how many of them are in there at the same time, like Did you know that the ethicist is in there, there's a whole Whole surgery. Like, I just thought they did their thing and left, but they are in there the whole time just watching the screen to make sure that there is no heart rate indicator to show that there could be some kind of pain. Like it's just I had no idea, mind you, these surgeries can go forever. You know if they told us anywhere between I think it was like 10 to 17 hours was the transplant time. But yeah, it was just I was like, wow, so and then you think of the surgeons anyway, they made they blow my mind. Like how blissfully unaware we are as a population to know what the medical industry go through. Like, they all fucking deserve a pay rise, and they deserve every single penny that they get. But yeah, so at this stage, he's sitting down. And like, everyone's just like, I'm keeping everyone updated on Facebook in the most brief way possible, because I just don't want to be asked any questions. It's just really emotionally taxing. And obviously Ryan and I try to deal with this personally, as well as as a couple. And how we deal with things is very different. But I mean, while there obviously were a lot of stressful times it's built, it's built a really big resilience between the both of us. And thankfully, we're we've been in a relationship since we were 18. So you know, we were 33 when this happened, it was we've got a lot of history going on there. So there was a super solid foundation. So any cracks that could have potentially have risen for a date? Don't get me wrong, they bloody have. But yeah, it's it's definitely a strong relationship that's come out of this. If you don't bloody divorce after a transplant, or something as significant as that, you know that your relationships pretty strong trauma, bonding 101. But anyway, so yeah, the thesis was amazing. But another thing was the social worker conversation. And they were with us with the surgeon, so the surgeon conversation. So obviously, they start talking about what can go wrong. And they're like, No, we don't want to panic you but we need to tell you. So at this stage, I'm like, fuck. So it was like, you know, there's three major things that can happen in middle of the transplant, we can take the organ out, and you can have an instant failure, which means that there will be rushing around to try and get a different liver to place in, or they can die. I'm like, fucking mad. So Ryan and I were then tested to see who would be a viable. Like, don't you can be a live donor for an A for a liver because a liver regenerates. So I mean, I guess in terms of organs, this was a good one to have a transplant for. Because they could essentially just take some of mine. And obviously I was the candidate and place it into Ra, we were the same blood type. Here's something for you. Did you know that if you're under 18 months, you can mix blood types because your body hasn't built an immunity to recognise that. That's the blood type to us at that time. So you can cross blood blood. What do you call it? You can put a organ in that isn't the same blood type, which is exactly what happened with Ari. But I'll come to that soon. Yeah, it was. It was all very the shit that we know. Now. We're basically doctors. Not really, but we know a lot of stuff. So yeah, they were talking about that could essentially happen in which case that I would be rushed to RPA in the middle of Sydney where they would literally put me straight under. Screen me. And then. So I could have gone to RPI for a week and did what I already did and did the whole workup. But they also said that they didn't think that that was going to be necessary. So they basically just said they can do it within 12 hours. They can keep taking keep your body alive without an organ and it blows my mind blows my mind. So yeah, I just went to that we got our bloodstone screened and find obviously I'd be that person. But yeah, they said that they would just get us to do it. The second one was that there could be a portal vein issue. I can't even remember what the other one was. At the time. I think I just kind of tried to block out what could go wrong. Because I was just so fixated on it's going to be it's going to be fine. It's going to be fine. It's going to be fine. So after you have your transplant workup, or and then you have to sign basically like Yep, he's signing our life away, literally. But anyway, the nurses and doctors were amazing. As usual, you build a really strong bond with them because you're there so often and they're Right, like because obviously are still newborn at this stage. They like, well, not at that stage, but even when he was at three months, seven months, he's still baby. It's what my other child is at now. And like, you know, they take him out in the middle of the night to let me sleep and woke him up and down the hallway and feed him. And I was like, oh, like, Can they do that? Now for my other one, it's just the, they're amazing. So yeah, we get back. And now it's a waiting game. So they say we've got to do an assessment where they meet with rpa, which is basically the adult hospital. And then, obviously, Westmead, and I'm pretty sure Randwick this like a body where they all sit down and they, they assess the results and where they sit, and if you're to be listed if they're ready to be listed. And in that time, Ari was admitted to our local thing. It was like a week. Within a week, we ended up back in hospital again, because of a case of societies, societies, as a fluid build up, your body can't drain the urine properly, if I'm getting this wrong, but anyway, it's just a fluid buildup. So his stomach started to swell. He looked pregnant. So they needed to give him this diuretic. LBM, I think is I remember correctly, where are you, but it forces your body to get rid of the fluid. So we had to delay being listed, because you're not allowed to be listed if you're out of the country. Or if you are. Or if you have, obviously, you're in hospital. So they went we couldn't be listed because he was in hospital at the time. So that delayed that. But then all of this stuff happened again. So he were in hospital, the outside is due to the fluid in his abdomen, it was pushing down into his green where he had, you know, a common problem with boys. And they have the hernias that are on either side of the groyne. Ryan had it his brother had it. already had it. They were saying then that they may need to go to Westmead to fix them because obviously his scrotum was so swollen. I was like and Ryan pick that up. I'm like, I'm like he's like this isn't normal. Turns out he's hernia was pushing down into my uterus must have been so much pain. But he was just so resilient. He just never looked like he was in pain. And then they're talking about having to transfer us to Randwick. And our local can't do anything without the authorization of Westmead kids and our team. They were just it's like they're our supervisors. Right. So then Randwick wanted to take us and Westmead was saying no, because it can put too much pressure on his body and if he needs to have a transplant, so it was all this big thing, right. So we ended up coming to the conclusion of giving him this album hoping that the fluid return would like you know, get rid of the swelling enough to bring the hernias back up. And then the what the result was that our transplant surgeon was going to stitch up the hernias while he was doing his transplant, so it was all in one. So it saved him having to go through two surgeries. Thankfully, they did that. So everything just worked. So then the following week, we were listed. This isn't even half of it. This is what I remember. So now we're listed right? It's March. Who remembers March 2020? Yeah, so it's much the country just stopped burning and in floods COVID. You know, we all go into an incident lockdown. Where we're kind of like at the stage where we're now having to not well, we're going we had to go in so pre transplant we had to go in for into face to face everyone else that was okay to do telehealth could but we needed to be observed and we needed his bloods done. So I think we his bilirubin levels at this stage were at thought to give you an indication bilirubin levels are anywhere between I think less than 10. His were at 185. At this time, I think that's shot up a lot higher. And I know I was reading a lot of transplant stories when I was in the hospital. They have these stories about people's journeys, which is quite nice. And there was a little girl in there with 275. So he wasn't at that level. But we weren't. We weren't at crucial level. We were just being admitted to hospital quite a lot for viruses which obviously plays a part in how you're listed as well. So if he's getting sick a bit more, that plays a part. And he he didn't ever need an NG so I know that a lot of Liver, kids need an NG and they go home with it, and they're fed through the tube. But we didn't need that. But we also needed to be switched to a different formula. Ironically, Bly was on it as well. It's a synthetic fat. So it your body breaks the fat down differently and absorbs it differently. So through a medium chain triglyceride versus a long chain triglyceride. And basically, your body's able to absorb the fat differently. And it doesn't need bile. So he was on that. And he seemed to go well on that. Thankfully, there was no supply issue then. But yeah, so then we will obviously had our social work, I helped us to get on to the concession card, which helped. So our formula tins ended up being like$6, which was super helpful. So there is no financial burden when you're dealing with all this stuff, which was really good. So yeah, we're in COVID locked down now. And I'm just concerned with the transplants around COVID. And usually, they say that they can transplant a patient that has the flu, like if they've got the flu, but the person that's donating or the donor and their family, they have to be healthy and screened before the organs transplanted. So you know, it's not like they just take it straight out and put it in it has to be tested and made sure that it work. And the cool thing about a liver transplant is that one liver is grafted. So it can go to two kids. It's it's super cool. So everyone's always like, how does another liver fit into a baby? It doesn't it's cut. They just have to make sure that it's got all the right areas. Like the veins and things. So basically yeah, he, we're at COVID locked down. And I'm speaking to my team about what do we do if if someone has COVID and they didn't know like, at the time, no one knew what they needed to do they they transplant with the flu. So if someone has the flu like so they they will transplant with the flu, because it's okay. But if they have COVID, they didn't know at the time what the hell COVID could do. They were just very concerned, no one had been vaccinated against it yet they it was just all really hazy. So yeah, there was all these big things. And at this stage, I was like, right, maybe I need to get a workup. So I at this stage was ready to become a live donor. A lot of implications around that, obviously, massive abdominal surgery. So you know, second children, all of that was at play, when and how and what was going to happen. And the implication of me having to be a donor, which I was absolutely going to do was that I would have been at a different hospital. So while I was going through all that shit, I wouldn't have been able to be there, I would have been trying to recover over RPA. And at that time, COVID was running through the woods, and they didn't, they didn't want me to get operated on because it was highly risky. For me to be over there after such a massive surgery as well. So it was it was all very up in the air and they just kept talking me out of it. No, no, just wait, no, no, no, just wait. And they can't tell you where you are on the list. Right? So I had no idea where we were on this list. I didn't know if we were at number friggin 10. Or if there was like 50 people and I had no idea but they just kept saying Just wait, just wait, just wait, just wait. Which made me think that we were close to the top right? Because obviously if you're number three, right, but you much better to the liver, that's that's a donor, you're gonna get that liver, not number one. They make they they do so much, I guess assessment on the organ and where it's going and how it will be transplanted. That is Yeah, they look for the ideal match. So I'm going to read you what I wrote in my, in my phone and forgive me if I cry because I might. But this is I decided to write down what was going on at the time because I knew that I just would not be able to read like my brain would stitch together parts of it and not the whole story. So I remember writing all this stuff down. So at the time obviously all the gyms were shut as well. So and I'm I was at the moment I'm not very fit, but at the time I was right into just training and getting myself into a good headspace. And my mate Vicki was over and we were about to do it. ROG workout, put the washing on. We're all sitting in the kitchen. Or we could have one person over. So Vicki was my one person about to head to the garage, all the machine gear. And I got this call from a random number. And I thought it was my friend Nikki because she said she changed numbers for the 50th time and just this random number popped up. So I answered the phones like Hello. And yeah, it was just the guy from RPA. So I'm about to read the story. So I saw the number said hello and was told it was a doctor from the transplant Coordination Team advising us that they had a liver for you. This is in writing to Ari. I was just about to hit the garage for a workout with Vic and we were playing with you at the kitchen bench dad was standing on the other side. At first, I didn't know how I felt I was taken aback. I mean, I knew the day would come. But for some reason, I was still shocked, numb actually, I'm not quite sure if it was excitement or fear. Something pretty serious was about to happen to you and I would have done anything to keep you safe. packing the car, I was full of mixed emotions, I'd cry at the drop of the hat. And within the next breath, I'd be smiling with joy on the way to the hospital. It was dark, not too many cars on the road. But I remember crying for the opportunity that now sat in front of us and the sadness that I felt for the donor and their family at the same time. This was the first weekend that people were somewhat allowed to move around. So there were a lit like a few cars on the road, but still not as many as before. Back to the story. As we entered the hospital, we were met at the door by nursing staff managing that COVID-19 protocols, we will ask the standard questions and waved through. We're set up for the night of monitoring and we're given the rundown of what was going to happen. You were the first liver donor recipient during COVID-19. The other one was a living donor which had different circumstances they will control. Things were a little up in the air to normal protocol. But regardless, we were met with an exceptional professionalism the whole time as usual. You had pretty decent night considering only one parent could stay the night so I stayed with you. Lucky for us the next day before surgery, dad and I were both allowed to stay. Given that our circumstances were a little more serious and an exception to the rule. Your last bottle had to be no later

than 5: 1:07:20

30am. We needed to fast you and clear clear liquids

until 7:30am. So at 4: 1:07:24

40am, you had your last bottle and it's 725 We gave you your first taste of apple juice to get you across the line. It didn't work. You lost it at 9:30am. And your dad and I did our very best at an over exaggerated entertaining and over exaggerated entertainment including singing and dancing and ridiculous hand waving. But we pulled through. At 1015. We were told, surgery had been delayed. And that meant that we had to keep entertaining you for another hour, buddy. It was exhausting. But we knew how important it was. Finally at 1215 They came to get you Dad and I had got you ready, we'll get you out of the car and down to the theatre. I'm gonna interrupt that. Ironically, that morning. The doctor that came into a caesarean prior to transplant was Josh. It was just full circle moment where you know he had met and diagnosed him and the morning that we needed to go back out. Yeah. Oh, mate, Josh was there for the moment. So it was actually really really lovely. As usual, we were met with Oh my God, look at his hair. Look how smiling he is. And he's just adorable by literally every person who saw you. You my dear boy, our showstopper. The analysis teams came out to give us a briefing on what was going to happen. We were well informed prior mate I had literally read every study and story about biliary atresia and liver transplants in paediatric patients I could find beforehand. Funnily enough, just before you went in, you were so smiley and happy. We made sure that when you went in the last memory would be of you singing and dancing with us. As the head of neath assist called us up, we said goodbye to dad and I walked you up to the operating room. The bed was set up for you with like a temporary air bed. It was warm and hot air was coming out of it. Not sure if you weren't impressed, tired or hungry, but by that stage, to be honest. Because it was then that you started to cry, which I didn't want because I didn't want the last memory to be of you crying. But we had shimmy shaped by the wiggles going and I was right there with you as I felt as you fell asleep. It was then that I got very emotional and I couldn't actually confront what was about I could actually confront what was about to happen to you. Two of the nurses both grabbed me with a big hug and ushered me out the door with great assurance that you are in the best possible hands and I worked away my tears not in the fear of losing you. But in the sheer emotional release of everything that we'd been through for the past nine months potentially coming to an end in the hopes that all of this would be that this would begin what could be considered a somewhat normal life for you. We made our way downstairs to the long stay parents area where we begin a 14 to 16 hour wait for you to come out and into ICU. So interrupting that this is where Ryan and I both dealt with this very differently. If you heard the conversation with Shani and I, the other week, Ryan decided to go for as a runner decided to go for a really big run around Parramatta Park, which is next to Westmead kids. And I just stayed in the room listening to some music. Looking at a wall, I just needed to be in my own head. And then we were encouraged to go out and get something to eat and try not to. But I mean, what else do you do? So we're out getting burgers and literally did like no man's land because COVID And we got the first call at 839 to let us know that your old liver was out and your new one was in. And the second call came at 1157. And it was Dr. Thomas, another person that we would love Dr. Gordon Thomas jumping in there. Our Elf on the Shelf is called Gordon for that exact reason. And he told us that your surgery had gone beautifully. And that you were in ICU waiting for us around 11 hours under the 12 to 16. We were told champion lucky had such an amazing, amazing surgeon and team around you. So we got to ICU at around 1210 and waited to see doctors, the head and the ethicist came in first, he let us know that you are great, no problems and your breathing tube could be removed in the morning. And we then saw your surgeon, your lifesaver, our hero, Dr. Thomas, he said the surgery was great. And you went so well. The blood type was mixed, when you will about that, as I mentioned to you guys before. And that meant that you had two types swimming around you. The coolest thing about the secondary blood type is O positive. And the one that went in was be positive mate optimism. So they also stitched up your hernias that we had issues with a couple of months earlier. And we asked how your old liver was, which apparently is a really common question. And I remember going him saying to us in this exact time. Yeah, it was shit. We laughed. And now we have a thriving new one. And that it wouldn't bother you anymore. Due to COVID We could only see you one at a time. So I went in first see. In fact, I was really happy and surprised that you look so well stark contrast to when you came out of your car site for weeks very different. Whether that was because I knew what to expect for you a bigger so it looked like there was less codes I'm not sure but wasn't as confronting. I wanted to skip you into my arms. But obviously we couldn't. So I was stoked that you're here held. So I'll start so I held you like a brush my fingers through your hair held your hand and kissed you on the forehead. I was relieved to have you out. Dad went in after me and gave you a kiss to I've got two photos from that moment. I've never been happy to see your belly button. So because his belly button, he was so swollen in the guts, he basically had an outie belly button when he doesn't. It's like It's like when you pregnant. So it was in when your liver was inflamed because it flipped your belly button to an Audi. And when I saw you at that moment, your belly button was hockey. And again, they told us that the yellow in your skin would disappear over the coming days. And we got excited over that because we didn't know if you're going to be a tan baby or a little windy to match your red hair. Note, he's a little tan baby. After a brief visit, we needed to leave to give you to the nurses to look after you. They also had to turn the lights down for you to relax and recover. And we also needed to rest and recover from what had been a very hard and emotional 48 hours. We left and we're amped up to see for the next morning. So at the top of that I've got date. The call came on Saturday, the second of my of May 20 in 2020. The time was 448 We were at home. We were with Vicki first person I called was my mom. The weather was sunny, windy and 13 degrees. And the last meal that he had was wholemeal macaroni basil and pumpkin which is not what my other kids eating at the moment but yet apparently still ate his food. So transplant was on the third of the fifth the time schedule was 1230. We went in at 1255 He went to sleep to shimmy shake by the wiggles. We got the first call at 839 got the final call 1157 and we got to the ICU

at 12: 1:14:47

10am. So I wrote that down because I thought that that was quite nice but you know in what I thought was probably going to be the hardest moment was to follow. We were speaking If not, for the surgery, just the I guess the recovery. So we were there for three weeks. And that's fine. Pretty, pretty quick, actually for transplant. And the benefit, the benefit is that when he does a transplant, everyone has to wear masks around in order to make sure that the liver doesn't reject. But in this case, everyone was wearing masks because of COVID. So, you know, at a time when no one was around, no one doing anything, we were kind of really lucky that everything just lined up to be this one. I mean, like, everything just seemed to work really well for us. The problem was, obviously, both Ryan and I were working at this stage and trying to deal with all of this stuff. And work was just insane. I remember, we had to obviously, we got to switch. So one night, we'd go up the other night, we'd go down to the downstairs part where we met some amazing people. And some friends probably for life. Car and Ben, we shared the ICU wall with them. That's clear wall and their son Byron was on the other side. And he was having kidney issues. And Kira would then go on to donate her kidney to her son, but they weren't there for the transplant at the time. But they had a little eight week old Amany who was down in the longstay. They were just alternating between Byron up in the ICU and Amity down in the apartment. I was just intense. We just felt so much for them. And I can understand how hard that was. But yeah, I had a good chat to Ben and we're just both talking about what we've been through. And yeah, you just meet some amazing people that are going through something similar and it was just really, really lovely. And even to now it where we talk to them quite a bit. In a couple of our hospital stays. Carson some beautiful doughnuts to us in the hospital rooms. Just amazing. So yeah, hospital mums know, they know the thing. But anyway, so yeah, it was it was it was a recovery. And he had that we were told that when the transplant occurs that sometimes they put this black goes over the top. And it can it's meant to be for the swelling. So because your body is made to fit your organs when you having another organ go into your body. Yeah, it doesn't fit. So sometimes you have to wait for it to kind of mould into position and they'll put a black holes over the belly. But it was stitched up. So that to us said that that was a really good thing. And it was a really good fit. And I remember our couple of our nurses came in to to check on RA and we're like, oh, we heard that it's a mint lever. And I'm like, I was just so like, oh my gosh, like I'm so like, someone's like I was thinking of the other family. And I'm just obviously they desensitised. But I was just like, you know it. No one tells you that. I mean, they do, but they don't like there is such a heavy emotion involved in knowing that someone has passed. Someone has died at the same time. Well, your child now lives and I know that it's it's a beautiful gift of life. But it's just, it's very, to be honest, I don't think I'm going to cry because these are the conversations I would have. I must have got my shit out the other conversation. But yeah, it's just it's quiet, heavy. It's a really heavy burden to have. And people will have questions, right? The people have questions. And mostly it's about the liver. And don't be afraid to ask the question. Some people really want to talk about it. I know that I had a lot of friends that would ask and I would go into detail. And then Ryan would be like, they don't want to hear about it like and try and shut me out. But I was like one I want to talk about it. So I'm going to talk about it. And they asked so I was happy to go into depth and detail about it. If it made him uncomfortable, walk away. But that was how I felt at the time and how I needed to deal with it as his mother. So the aftermath was different this time because when we had the casts i It was so lively and entertaining and the kids hospital and you know COVID hadn't happened yet. So you had clowns coming in and service dogs coming in and Starlight foundation, you know amazing what they are coming in and entertaining the kids. We had Ward nannies they dress up in what looks like little ice cream parlour outfits and they sit with your children and give the parents a break so they can go away. It's just incredible. And I remember sharing the room when Irene had his castle with a lady that had twins. Bless her. So she was at home with one twin that was fine and the other twin had short guts so this small intestine was too small so basically that he couldn't handle having any food and he was on would have been like they were talking about intestine transplants at the time. I don't think that they are regular regular reoccurring at the moment, but full on, like, you know, so you listen to all of these things that are happening to people around you. And you're just in this, like, you're in this different world, like you walk out those hospital doors, and you're just like these people just have no idea what's going on inside here. Like the dead silence of the hospital at night, when no one's there, workers have gone home. And it's just parents with their kids and the night crew. It's this eerie silence. And this camaraderie of parents that were past each other in the hallways to know that you're going through something similar. And the vending machines that are full of overnight things like toothpaste, and I remember, my card wasn't working for some stupid reason just wouldn't scan. And this lady came and use her card to get me a toothbrush. I was just like, man, that's just things like that I just smallest things. So I'm going to being in hospital, one of our surgeon or one of our gastro doctors was explaining to me about she knew how I felt. And I was quite emotional. Because at this stage, she didn't know how I felt they knew from a medical standpoint, but they don't know from a parent's standpoint, knowing what's going on and from, I guess, a medical point of view is different to a parental and emotional side of point of view. So actually had to call her out, I said, we will know you don't know what's going on that you get to leave here and go home to your healthy family. And things are fine. And then you come back to work tomorrow. And it's a work issue. This is our life. This impacts our whole life impacts our work life, it impacts our personal life, it impacts our relationships. And I didn't mean to sound really stressed out. But I was just crying and telling her this and I think there was two things were taught that day that she needed to empathise a little bit differently, saying, you know, what it's like to someone when you actually don't know what it's like, it's not the right thing to say. And I think if I've been taught anything from our situation, and our ordeal is how to, how to deal with situations differently, and how to address problems differently. I'm not really going to go talk too much about the aftermath. Because, I mean, I can talk about that later. But it's, I think this podcast can be forever. But the the end result is that he's thriving. You know, we got home, he was on prednisone steroid. And he just put on so much weight, and he got so fat and so cute. But he changed so much in appearance that we were just like, wow, this isn't our kid. Bo is just incredible. It's it was such a journey. And it really wasn't until July, that we felt the real impact of what just happened. And I no doubt know that we have PTSD, and things that we do now. Triggered quite easily. And it's going to be a big lot of I guess, counselling and I see someone and and I guess we had, I actually need to jump in there and say that we were just so supported by everyone that we knew. Our friends sofa mais made us two weeks worth of food that we could store into the at home like at the stay when we were at the hospital because you can't really go anywhere but they had like a little kitchen. We just put the food in the freezer. So it was just so nice to know that when you had a big day, you could go down and just chuck something in the microwave and eat it know that it's a home cooked meal rather than something from Uber Eats and also not as expensive. We miss drove it all the way out to us and so if cooked at all, and that was really appreciative and friends Megan and Megan and fake who does some stuff and we just had these beautiful bunch of flowers from my old workmates. And yeah, it was Yeah, we had a lot of a lot of support, a lot of messages, a lot of checking in. So I don't know how people would have dealt with that being alone. I know that they were speaking with me about a lady that came from one of the islands of Australia and didn't speak a word of English and had to be transferred here with one of her kids and she was here for two years, two years with one of her children and she wasn't even back home to her other kids. So she had two kids at home and she had to stay here and imagine being here not knowing a word of the other language like absolutely no one else to be here with but your child and missing your other two children at home like this is what I mean by people just do not know the levels of shit that they're not dealing with. There are so many people out there that are dealing with such traumatic things. And you know, even even families that are driven like flown in from regional Australia or Perth like that They flying over. And I mean, the thing is, right when you're called up for a transplant, you don't even know if it's going to work. Like you don't know that, like, they call you up straight and it's not like, Okay, so that's all it's gonna say. It's not like, the the TV where they like, you need to get in here now like, blah, blah, blah, like it was for us. I mean, I guess it depends on location. We were 45 minutes to an hour from this from the hospital. We were like, they were like, yes, scheduled like, so this is five o'clock the day before, you know, and they're like, Yeah, you scheduled in at 11. Tomorrow, or 12. Whatever time it was some like we had like this whole time. Like they're like, you can stay home or you can come in in the morning. Okay, so yeah, they do this big screening first. So yeah, I remember being told that one of the families from Perth had flown over in midair, they realised that the organ wasn't compatible. So that to fly over, or let the land and then fly back over again. So like, I mean, yeah, in terms of experience house was just surface level. You know, there's so many that just do it way worse, kids that have had two transplants that they don't work out, we're really lucky our is just the only thing that we've really encountered post transplant is just a load of viruses, but due to his age, that was just bound to happen. So obviously, he gets a virus, he goes to hospital for 48 hours. So last year, we were in hospital six times in three months. And that was pretty hardcore. But the December prior to that, because the liver was transferred with traces of CMV, which is herpes, herpes virus whatever that was, he had to be put on like another so he was on three basically three immunosuppressants for a while heaps of medications that do you have to be taught how to use medication. It's full on too much of one of the immunosuppressants can actually like fuck up your whole system. So you have to be absolutely meticulous with the measurement. They do it with you on a day they teach you all about the stuff. But yeah, like it's just, it's just crazy. So he was transferred with that. So it meant that in December, when they did the testing for that, that that obviously came back positive hepatitis can cause big issues into the liver, which is obviously what that would have been a result of and also like, you know, people who call sores and stuff that's a form of herpes, so he can't even be any anyone that has any form of colossal like so you know, there's all these things kind of grapefruit grapefruit effects, the tacrolimus level is immunosuppressant type effects the the acidity of it, I don't Anyway, yes. And basically, it's on a pregnancy diet. So we really have to be careful with things like you know, salmonella, and food poisoning and stuff that can cause bacterial issues, obviously, bacterial goes throughout the whole body and can doesn't travel by our host. So it can affect the liver. So, yeah, there's all these things that we need to be really cautious of now, but in terms of him, he's such a healthy, happy little boy now, like even we got COVID A couple of weeks back, and he was the one that had it, let the least like over in two days couldn't believe it. So we're just, I feel like we're at that point where he's kind of over the sickness. He's a bit older now. So he's not hands in mouth getting sick every five seconds. And we're kind of getting to that, I guess, level of normality that we've been looking for, for I don't know how long obviously, liver, liver disease is something that we're always going to be ambassadors for and promote awareness for and donate life. Because we know that that is just such such a crucial thing for people to do. Donating blood is a crucial thing for people to do. He had a transfusion when he was in the process because obviously a lot happens in that time. Well, so you know, they leave you open during the middle of the transplant like you know, you basically have no lever in there for like, a couple of hours but they have a break. It was like the stuff that you learned now it's just incredible. But I mean, like there's so much information that is out there about transplant it can't travel we weren't allowed to leave after you know he was listed couldn't be two and a half hours from the from the hospital you know, now that we travel his travel insurance is obviously through the roof because he's he's got issues if something's to happen, you know, there's all these implications he needs to have us tacrolimus every 12 hours you can't go outside that 12 hour window too much can fuck you up not enough can make it reject. So this like just fine balance of constant monitoring with that also comes constant monitoring. So you know, if there is ever anything minuscule, his blood markers will pick them up prior, you know, it makes him I guess more susceptible to cancers because he's got an immunosuppressant which obviously suppresses your immunity. So when you do get cancer, like your immunity cut fine and does good. So you know that we're going to pick things up a lot earlier because of that screening. So yeah, I mean, there's lots and lots of stuff that you can check out. But yeah, there's so many crucial elements and we're always big ambassadors to say, to put yourself on the donor list, it's not automatic, you have to actually register. If you're Australian, I think South Australia, it's automatic. But everywhere else, I think you have to actually ring up and put yourself on it. So if you're interested in that, you can do that through your myGov account. And also donate life.gov.au. They're amazing. We have written to our transplant family, that took me a good eight months to write because I didn't know how to articulate what I wanted to say. That was, I get it's a really hard letter to write because you don't want to write something that is going to offend them. Because you've just lost someone, right? You don't want to be all like, Oh, thanks for the level doesn't work like that. You've got to be super compassionate. I wanted to make sure that we got over the hurdles or anything that could potentially happen, you know, all things, thank you for the organ but rejected or you know what I mean? Like I just needed to be in the right headspace. So I wrote it just before Christmas in 2021 2021 2020. Sorry. And I'm yet to hear back and they didn't, they didn't have to write back. But I know that I feel better knowing that I've written a letter. And I can continue to write letters. But you know, sometimes it can be a bit emotional. I know that the donor was young, they won't tell you how young I know that it wasn't a paediatric patient. But I know that it was a young adult. They don't give you information because of privacy issues. Like for instance, I wasn't aware that they could, like you know, things like people feel emotionally attached if you have their deceased loved ones organ, that can be implications of like, you know, they want to be part of that child's life because they feel that they're there, their family member lives on through you. And I just didn't even think about things like that. So I kind of envisioned too many people would be like that. But you know, grief does some pretty weird things. But yeah, I encourage everyone to please get on to the register for organ transplant. To be very vigilant in screening your children and to be their biggest ambassadors. It's one thing that that they don't tell you is that the mother's instinct is full on it is it knows something is not right. It is crazy. And most of all, if you're going through something like this, is to not feel guilty. I mean, you can go back and listen to the conversation or be shiny, but you do you feel super guilty, that you've done something somehow. But yeah, it's just about moving forward together as a family and doing everything that you can to make sure that your child has the best life that they can have. But yeah, I hope you liked listening to that story. Um, you'll hear a lot more about my kids as we go through. But this one was a pretty intense conversation, you probably have to listen to it in three or four parts. But yeah, that's our transplant story. And I want to encourage everyone Donate Life week is at the end of July, which lines up perfectly with Iris birthday. And we do a lap of the lagoon which raises funds for the Westmead Kids Hospital, loving the lagoon Fund, which donates money to the Children's Hospital liver transplant team. So if you have any questions, I mean, I'm always happy to talk about this so you can find me, you know where to find me. It'll follow this but now that's our story. If you enjoyed this episode, then don't forget to head over and rate and review. It helps you let other women know we're around. Also, don't forget to follow along on my Instagram page @iamtaraladd or hit up www.taraladd.com