In the UK, 36% of the population are currently signed up to the organ donor register. There are around 6,500 people waiting for a transplant. There are about 5,000 people who die each year in circumstances where they could donate their organs. And approximately three people die each day waiting for a transplant.
These are the stats. And let’s be honest – they suck. We need to change them.
Organ donation really is a miracle; it’s a simple fact that Hugo would not be here today without it. But as the stats above allude to, there is a real shortage of organs. Too many people are waiting for too long for their gift, because too many people are saying no. Many people believe that all you need to do to donate your organs is to be on the organ donor register, but this is not the case. It’s a great starting point, of course, but it won’t guarantee your wishes will be fulfilled. If you die in circumstances where you could donate organs, your family also needs to give their consent. And sadly, less than half of the families approached about donating their loved one’s organs agree to donate if they don’t know that was their relative’s wish.
As you’d expect, given our journey, that question would be a no-brainer for us. But for many families in that situation it can actually be a real burden; having to make a big decision at such a difficult time cannot be easy. We mustn’t pass judgement on the families that say no; we don’t know them or their situations, their reasons. But we can try to make their decisions easier, by talking about it. By having the conversation with our loved ones. It really is a matter of life and death for so many people – it may sound like a meaningless platitude, something that’s “easy to say” (it’s really, really not, by the way), but it’s the real, harsh reality of it.
Unfortunately I know this because last year, my extended family lost two very young baby girls within just a few days of each other. Daisy, part of my liver family, needed a liver. Marnie, whose mummy is one of my oldest childhood friends, needed a heart. Two families lost their darling girls – daughters, sisters, nieces – because their new organ simply didn’t come in time. These beautiful girls were just months old. They should still be here. It still breaks my heart to see their parents and families having to carry on without them. In spite of their heartache, both families have done wonders in keeping Marnie and Daisy’s legacies going, campaigning for awareness and a change in the currently opting-in system (something I’ve talked about before), and not letting their babies’ lives be in vain. Marnie’s parents were even able to donate some of her heart valves after she died; they managed to give hope to other families when their own had been shattered. Their strength is simply inspiring, and their girls will never be forgotten.
Marnie Brace, 10/5/16 – 26/10/16
Daisy Williamson, 14/7/16 – 24/10/16
While we will never, ever forget these beautiful girls, it’s important to spread a message of hope this week for them. To use their legacies to focus us on what we can do, what we can change – and what a positive story organ donation can be, too. Just as Marnie and Daisy’s wonderful parents are doing, many of my liver family are also campaigning and spreading awareness this week. These children are the lucky ones whose organs came in time, even though some of them had agonisingly long waits – Conor waited over two years. These families have been kept together through the strength, bravery and kindness of their donor heroes; mostly strangers but some living donors (like Hugo’s superhero daddy). They’ve been able to reach milestones that they, at one stage, couldn’t believe would happen – first birthdays, first days at nursery or school, passing driving tests. I’m blown away whenever I see how well these kids are doing, especially those we knew closely at King’s – to see them looking so amazing now just puts the biggest smile on my face, and I’m so proud and privileged to know each and every one of these families. Most of these kids are here and living their lives on behalf of their angel donor, and all of them carry a truly special message – that organ donation works, and is so, so worthwhile.
We count ourselves lucky every single day that Hugo got his liver in time and that he is still doing very, very well (of course, touching wood). His clinic appointment at King’s back in July was perfect; the email from his doctor the following week simply said “bloods all good – see you in six months”. It still makes my head spin, really – I don’t think that feeling will ever leave me. At eight months old the chances of him reaching his first birthday were getting narrower by the day (after transplant, we were told he probably only had a couple of weeks left), and now he’s speeding towards his third birthday. His life will never be a straightforward one – he’ll always be under treatment for the transplant with regular bloods (the next set is today, gulp) and daily medication. But he is clever, cheeky and funny, strong-willed, independent and full of wonder. And above all, he is here. He has so much fight in him, and is so full of life and love (mostly for Thomas, obvs), and that is all thanks to the miracle of organ donation. It could have been so different, and I’ll never stop being grateful that it wasn’t that way for Hugo.
That’s what this week is about. Please, help us make a difference. Don’t let the world lose another Daisy or Marnie. Sign up to be an organ donor. Shout LOUD about it. Make it known to anyone that will listen – share the shit out of it on whatever social media you have. Have the conversation that could give one more person the chance to live, that could keep one more family together.
Let’s change the stats.
Watch this video from the 2017 Organ Donation Week campaign here:
Two weeks ago, on 5th June, we celebrated the best milestone of this whole liver journey so far – Hugo’s first liver transplant birthday! I remember the disbelief I felt when we’d reached nine months post-transplant, so you can imagine the emotion that came with the first liverversary. I managed to hold it together for a little family party in the morning, but once we’d got back home it hit me and there were more than a few tears shed – happy ones, of course.
It still sends shivers down my spine, to be honest with you; how Ross gave what remains to me to be the most heroic, loving and generous gift anyone can give in life – the gift of life – to our son, and how lucky we really are, in spite of the blips and bumps we are still experiencing, to all be here and living life together. That feeling of awe of what he did, and the joy of watching his unbreakable bond with Hugo, brings me happiness every day.
In the last three months, life has been hurtling past us. Mainly because Hugo is now hurtling past us; not only has our boy learnt to walk, he is now running around. All the time. Proud doesn’t even come close to the feeling we get when we watch him running around the park, bending down to smell flowers and chasing his ball around. It’s incredible. He has also, almost overnight, developed a total obsession for anything round or with wheels; now, rather than our flat being overrun with all things monkey, we are contending with trains, cars and tracks. He’s taken that momentous step from baby to toddler – you know, the one that makes you burst with pride while also suddenly and simultaneously realising, with a tinge of sadness, that your baby is growing up way too fast. And of course, part and parcel of toddlerdom is the tantrum, which Hugo is most certainly trying on for size now. He knows what he wants (normally Peppa Pig or chocolate), and if he doesn’t get it – especially when he shouts ‘TA’ at us (we can’t fault him for being polite at such a young age, although it makes it much harder for us to stick to our guns and enforce ‘no’) – he can activate Major Meltdown Mode at the drop of a hat. Although it is undoubtedly hard work, I’m also quietly a bit pleased that we have a son confident enough to be a bit headstrong, and – let’s be honest – that we’re experiencing the normal, shitty parts of parenthood as well.
Cool dude running
The funny thing is, even though life in general has been getting better by the week, in the last few months I think I’ve actually suffered more mummy wobbles than I did during most of his first 18 months. Before Hugo’s diagnosis, I was a completely stereotypical new mum, obsessing about every decision and scared that I wasn’t doing right by him. Then, of course, everything got taken out of our hands and our focus shifted to just getting him through, getting him the treatment he needed to get him home again. In that time, I didn’t really have much of a chance to over-think our parenting methods or choices, and I kind of thought that once we were through the experience I would inherently have the confidence or perspective not to worry like that any more. Well, I was wrong – it turns out that even surviving the storm we have doesn’t give you any immunity to the fears that existed before; even though I can see how well he is doing, and despite the fact that I know there is a much bigger picture to consider with Hugo, I still find myself worrying that I’m failing him somehow.
Whether it’s his diet (my major obsession), his physical milestones or his speech, I seem to be able to find something to worry about on a regular basis. I know in the rational part of my brain that Hugo actually has a quite good and varied diet – he eats loads of fruit, a fair amount of veggies, home cooked curries and broccoli muffins – but I still feel guilty that we buy him Ella’s Kitchen meals, and feed him waffles and nuggets. I know I shouldn’t, but I take it personally that some other kids of his age will eat everything and he doesn’t; I was so determined when he was born that he wouldn’t be fussy, so the fact that he is a bit makes me feel like I’ve failed, even though I know it’s totally normal. With his physical development, I know deep down that there is nothing to worry about – the fact that he is literally running and climbing everywhere now given he didn’t even have a chance to roll until he was about ten months old speaks for itself. It’s amazing, really. But, rather than delete it, I still worry when I get a generic BabyCentre email telling me what a typical 20-month-old should be doing and see a long list of things that Hugo hasn’t done yet. And even though he shows great levels of understanding, I still find myself focusing on the fact that he doesn’t say more than ten words yet, or that he can’t string a basic sentence together, rather than focusing on what he can do verbally.
I know it’s ridiculous, but I can’t help it. Mummy wobbles don’t listen to logic. In fact, they actively ignore the rational part of the brain. It’s not that I’m not proud of him, because I am – immensely – and it also doesn’t matter that I know all of this stuff is very normal; I just don’t know whether I’m doing enough for him as his mum.
First proper paddle was a hit!
Luckily, I have a new positive force to reckon with – Hugo’s childminder, Emma. Putting him in childcare in the first place was a really nerve-wracking, but positive, step forward for all of us. The first time we went to meet her I mentioned these worries to her, and she set me straight there and then. She told me to focus on what he is doing, not on what he isn’t, because he will develop differently to every other child, liver disease or not. Straight away I knew that she was going to be a great influence on him and me. The fact that she is giving me reassurance from a new and independent place (she had no involvement in Hugo during his illness, and only knows him as the child he is now) has really helped my confidence, and thankfully Hugo absolutely loves going there – he literally can’t get out of my arms and into the playroom quick enough when I drop him off.
My latest guilt is about his Hickman line. The team at King’s weren’t overly keen on taking it out; they wanted it to stay in a bit longer, but we were reaching a stage where he was pulling at it, scratching at the dressing, wanting baths – he just wanted to be free. We discussed it at length and they agreed it was clinically safe enough for it to come out, so in early May, just over a year after it was put in, we finally took the trip back to King’s to get it out. Life without his Hickman has been absolutely bloody brilliant – I never knew how much I would appreciate regular pj’s, and not having to put him in a blasted vest every day! He loves his baths and the paddling pool, although we still haven’t been swimming yet. More than anything, he just likes being nuddy, especially on the rare occasions that the sun gets its hat on and he deems it too warm for clothes! Unfortunately, it also means stabby bloods at hospital again, and the first set we had at QEQM a fortnight ago were really traumatic. And even more unfortunately, one of his liver functions was a bit high (still in range, but above his normal), so King’s have asked for a repeat this week; because his immunosuppression is currently at such a low level, he is at a greater risk of rejection and they have to make sure this isn’t an early sign of it. We then have his routine clinic at the start of July, so that means three sets of stabby bloods in a month, which is not what we’d hoped for. And of course, I’m worrying now that his body is starting to reject the liver, in which case he’ll need IV treatment that will be now be much nastier for him. I feel responsible for putting him through this nastiness, and even though both Ross and I stand by our decision – the improvement in his life makes it worth it overall – it doesn’t mean it’s easy to go back to it.
Playin’ silly waiting for his Hickman to come out at King’s
Loving his baths now 🙂
Having said all of that, I’ve also learned a very valuable lesson in the last few months. To pick my battles. So even though I may worry about that stuff, sometimes on a daily basis, I’m no longer letting myself get to the stage where I’m obsessing; I know that there may well be bigger, tougher battles that we’ll need to face at some point in the future, and I need to save my strength for them. And that in itself feels like a bit of a victory; I doubt any mum really gets away without any mum-guilt in their lives, but the trick is not to let it take over. I think I’ve become quite good at that in the last year, and I’m quite proud of myself for it.
The thing is, for all intents and purposes Hugo is a very happy, content little boy. I can sit there and worry about whether or not we are doing the best thing for him, or making the right choices, but he proves to me every day that we must be. He is learning, developing, laughing and growing into a headstrong, loving, clever little boy. And that (along with the odd glass of wine) is enough to keep me on the sane side of the fence – for now, anyway.
I don’t know how it happened this quickly, but today Hugo is nine months post transplant. Nine! We can now say that Hugo has officially been ‘healthy’ for longer than he was poorly. I say ‘healthy’ because things aren’t quite settled down yet, but still – how bloody incredible is that?! Incidentally, it’s also just over a year since we were first told that he would need a transplant, and also just over a year since I first published my blog.
It never really occurred to me that it was only just over three months between us being told Hugo needed a new liver and the transplant happening. It certainly didn’t feel like it at the time, but three months is not that long. Obviously, when you’re in the whirlwind of end stage liver disease, every day can feel like a year in itself, but now looking back at how quickly it really happened, it seems completely unreal. We went from having a poorly but stable baby in March, to living in hospital by the end of April on a continuous feed, regular albumin infusions and ascitic taps, with two failed attempts at the transplant in May before it finally happened at the beginning of June. What really strikes me now, though, when looking back, is how calm everything really is at the moment. Sure, things still aren’t completely settled, but it the insane and hellish rollercoaster of last year finally seems well and truly behind us.
There have been various points in the months since Hugo’s transplant that we’ve felt like this. Life begins to take shape again, we start to relax and then something happens that dumps a great bit load of uncertainty and anxiety straight back into the middle of our lives. And even though I know that the bumps over the past few months are really nothing in comparison to what we were fighting before, they can still hurt. Because essentially, all we want is for Hugo to be healthy, to be happy. And at the moment, touching wood, he is.
Day at the park with ViVi
Books. Just books.
In fact, he’s doing so well that we’ve got a plan in place again to get his Hickman line out. Of course, there’s a million and one things that could change and prevent this happening again – not to mention Hugo’s tendency to never, ever play by the rules – so we’re not going to get our hopes up too much (unlike last time) but the fact we’ve got a plan in place again is a massive step forward in itself. The last time this was being discussed was back in September, before his EBV became a real issue. Now, though, his bloods all seem to be heading in the right direction – I’m convinced that the new iron supplement he started a month ago is behind the improvement in his results; I don’t think King’s would ever officially agree with me, but given the consequences of anaemia can include low Hb and becoming more prone to infection, it seems to add up. Three weeks after starting the supplement, his Hb and albumin are back to normal, and the EBV is now the lowest it’s been since it first poked its nasty head up last summer. And the other really happy news is that his histology (biopsy) results from last week are now back and are all good. There are some tiny traces of EBV DNA in some of the cells, and a little bit of inflammation in the oesophagus relating to reflux, but most of the results are EBV-negative. They can effectively all but rule out PTLD, which was one of the major reasons the line was being kept in. It feels a little bit like Groundhog Day – they thought they had ruled it out in November, but this time it feels more believable, because this time he actually looks and feels like he really is well. And even though he’s been off his main immunosuppressant since November, his liver function is still amazing. So IF his bloods next week are good, they will be stretched out to monthly. And IF the next set is ok, and his ultrasound and review look good, then they will book him in for the line to come out. He’ll have one more set of bloods before the surgery date, and IF they are stable, then we’re going ahead. They are three great big fat ‘ifs’, but they’re tangible hurdles now rather than a never-ending stretch of not knowing. It’s a better, rather brilliant, place to be.
When we found out at his routine clinic in January that Hugo was anaemic, we did a bit of research about iron and the supplement he was given. Listed among the signs of anemia is lethargy and lack of energy, but he didn’t suffer from either of those things. The thing with Hugo is that, given that he became progressively poorlier from birth up to his transplant at eight months of age, we’ve never had a real gauge for how much energy he should have. He just kind of got on with whatever reserves he had, so every time we’d get on top of one part of his health and he’d improve, we’d kind of assume that we’d reached his optimum. So when King’s tested for the iron levels and asked if he had been lethargic, we said no. Because we really, truly didn’t think that he was – he’s always been so playful, so active, we had no cause to think that.
Still a swing junkie
Cuddles with daddy
Well, it turns out we were wrong. So, so wrong. At every stage of his life so far, he has amazed us with his tenacity, his jollity, his sheer strength. Now though, he is Hugo – but powered by rocket fuel.
His physical, cognitive and behavioural development has taken such strides forward that he’s pretty much hitting most of his milestones now, and following the normal patterns of mental leaps –given the obstacles he’s faced in his first 18 months, that blows my mind a bit! He now has some serious pace on him (he is all but running on his hands and knees), and is getting so close to walking; before the iron, he was only just able to pull himself up – and he didn’t enjoy it much at all. Now, he is cruising around the furniture and is taking steps with our help. Things seem to have just clicked into place mentally, almost overnight. He really knows his own mind now – and he certainly knows how to tell us exactly what he wants; he mostly enjoys being upside down, playing hide and seek in his tent and throwing balls all around the flat. He is a real bookworm, and loves cuddling up reading stories with us. He is a master stacker of all toys. He sings, he kisses, he chats, he claps, he cuddles, he climbs, and he laughs – all the time. He’s just incredibly self contained and incredibly happy. He’s also becoming increasingly cheeky and naughty, deliberately disobeying us when we tell him not to do something. He bites us, he throws tantrums and he grinds his teeth. As much as I don’t want a naughty child, even all of this makes me very happy (apart from the teeth grinding. I can’t STAND it). Partly because he has a real cheeky, knowing glint in his eye when he is doing it – we really need to learn to tell him off as he just makes us laugh too much. But mostly, it makes me happy because it is just completely and utterly normal.
Playing hide and seek with his ball
Story time with grandma
These are the kind of things that I expected to happen as a mum. They’re the kind of things that our friends and family experience day to day. It feels like we finally have something they can relate to with Hugo, and us with their kids. That’s what’s really lovely about life at the moment – it feels like we’ve finally got ours back. Yeah, it’s not the same as it was, and we’re still a bit restricted, but our new version of normal is actually bloody great! And we’re slowly starting to relax in terms of what we feel comfortable doing with Hugo – he’s having more play dates (and loving them – he’s a very sociable and friendly little boy), but we’re still avoiding baby groups and soft plays until at least after this flu season. We’ve got a good balance of routine and variety, and Hugo is thriving on it. He’s no longer spending 24 hours a day with me, and although it’d have been nice for him to have missed me just a little bit more when I went back to work in January, it’s been really good for him. Good for both of us, actually – being his mum is the single most amazing, fulfilling job I could ever have, but I totally lost all sense of myself when I was a hospital mum, and it’s nice to have a bit of ‘me’ back now. He absolutely loves spending a couple of days a week with his grandma and having more time with his daddy again, and what’s even better is he’s always really happy to see me when he’s not been with me for the day.
So yeah, life is pretty good right now. This is, without a doubt, the healthiest and happiest Hugo has ever been – and in turn the happiest Ross and I have been, too, in a long time. It’s impossible not to smile when you’re around that little boy – he is just so full of joy and life. I have to keep reminding myself we can’t take this for granted, that there are no guarantees, that we don’t know what may come around the corner; heaven knows we’ve had the rug pulled from beneath us enough times now. But equally, we’ve been through a hell of a lot to get to the stage we’re at now, and I just want to enjoy it while it lasts.
Last year was a bit of a write off. Yes, we were incredibly fortunate to be home for it, and we had a nice enough time, but the reality of Hugo’s diagnosis, his recovery, and what it meant for us was still sinking in. It certainly wasn’t how we envisaged our first Christmas with our boy. This year, however, we’re well and truly going for it. We’re (just about) getting a firm grip back on our world after that horrid blip that gave me a big wallop to the stomach in November. Our fridge is now stocked with wine (yum), cheese (yummer) and sprouts (yuk), and our Christmas jumpers are dusted off ready to be unleashed. We’ve taken a great amount of pleasure in spoiling Hugo rotten this year, with a mound of pressies wrapped and ready for him under the tree – which he is pretty obsessed with, by the way. He’s just fascinated by all the lights and the baubles. I took him to visit Father Christmas for the first time with my sister and his cousin; one of the ‘normal’ things we’ve now ticked off the list that I wasn’t sure I’d ever have the opportunity, or confidence, to do (and yes, Hugo and Violet are both officially on the Nice list – phew!) We’re also hosting Christmas dinner for the first time ever, so I’ve been practicing and perfecting my roasties for the fam, who all happen to be bloody good cooks. No pressure then!
Mesmerised by the lights at the grotto
Cosy, Hugo? 🙂
Looking back over this year, as we all tend to do at this time of year, it kind of goes without saying that it was beyond tough. It certainly wasn’t a year we thought we’d ever have to endure. But here’s the thing: we did endure it. 2015 tried to destroy us, but we fought – hard – and we won. So rather than feeling sad, or lost, or scared about what my family has been through in the last 12 months (and as I felt this time last year), looking back now I feel strong, proud and extremely, extremely lucky. And ready to move forwards into 2016 with my best foot forward.
It feels bizarre to say that we’re amongst the lucky ones, given all the trauma and stress we’ve lived through, but we are. Because Hugo made it. We faced the shitty hand he was dealt, and we got through it. Yes, we’ve had blips since his transplant – and we’ll probably continue to have blips into 2016 – but we’re finishing the year stronger and happier than we started it, and we’re together. At home. Healthy. And as cheesy as it may seem, that’s the best thing I could have ever wished for, because I know it’s not the case for so many out there; it was never a given. The meaning of Christmas has changed so much for us this year (as I’m sure it does when you become a parent, anyway). The festivities, family fun, presents, pigs in blankets and glasses of prosecco – they all have a place, absolutely. And I’m certainly looking forward to all of that. But I’m no longer taking it for granted; if those pieces of Christmas didn’t happen, and we still had Hugo at home, it would still be perfect.
Daily chaos. With Mariah on the TV, obvs.
Cutest Santa ever?!
As we’ve been building up to Christmas, I just feel so grateful that we are able to enjoy it at home with the boy, playing lots of Christmassy films and tunes, and watching him play, laugh and discover. I’m not going to lie; once or twice (ok, several times) I’ve found myself getting completely and utterly overwhelmed and shedding a few (happy) tears at the most seemingly insignificant situations – just sitting playing a game or reading a book with Hugo when one of my fave festive songs comes on, for instance. Goodness knows what I’ll do when Christmas day comes; waterproof mascara, I guess.
And then on top of all of that, Hugo is doing really well at the moment. He’s had a happy, fun-filled month, and we’ve both been able to relax and do a bit more for ourselves; taking that invaluable step back to be us rather than ‘just’ parents, from time to time. His bloods last week were perfect again (barring his EBV level which has crept up – but I’m trying to put that to one side until the repeat next week before freaking out again). His cognitive and physical development is incredible; the physiotherapists were blown away by him last week. He is learning new tricks at impressive speed, and is well on his way to standing up on his own – he is so determined. Actually the main things concerning us at the moment are ‘normal’ baby things. Like him not sleeping. As comforting as it is that these are our only current worries, we’d really like him to go back to sleeping soundly at night soon, please!
Slight happy faces…
My smart boys, out for lunch
It’s safe to say that all of that makes me feel pretty lucky.
So this year, while I’ll be most certainly be holding those who are forced to spend the day in hospital or without their loved ones in my thoughts, I’ll also be making the most of every sleep-deprived second at home with my boys and my family. Hopefully with the best roast potatoes ever.
Merry Christmas and Happy New Year, everyone! Wherever you are, whoever you spend it with, I hope it’s magical.
A year ago, I thought I was ready for you. I didn’t think you’d arrive quite so early, and end up sharing a birthday with your cousin, though. I knew that motherhood was going to be tough, that it would change me. But really, I had no idea; how could we have known what was to come a few weeks after you were born, seemingly a happy, healthy little boy?! Before you came along, I never knew my heart could hold so much love; that I could love in a way that you physically feel, that can make you cry for no reason, can make you feel winded (all in a good way, I should add!) I never knew that my heart could break so badly, into so many pieces. And I never knew that I could be as strong as I’ve been; as I’ve had to be. There’s one thing that’s got me – and your daddy – through it all. That’s you, Hugo.
You’ve been through so much in your 12 months of life, so much more than anyone ever should. And even through the really shitty, tough times, you’ve been incredible. So strong. So resilient. So patient. So inspiring. So much so that, actually, it breaks my heart a little. Because you shouldn’t have had to be all of those things at your tender age.
When I was told to expect you to be a different, much happier, baby after your transplant, I kind of laughed it off a bit. There’s no denying that you were very, very poorly. But you never showed it; you’d already been through four surgeries, five months of steady deterioration and countless weeks spent in hospital, and all with a smile on your face. Even when I was carrying you down for your transplant, when your daddy was already on the operating table, you were smiling away. I honestly couldn’t believe that you could get any happier. But my goodness – they were right! As the days, weeks and months have passed since you got your daddy’s liver, you have become SO different. You’ve become you. Not poorly Hugo, Hugo who lives in hospital, yellow Hugo with a giant belly. Just YOU. My handsome, cheeky, happy, giggly, hungry, loving little boy.
The thing is, while I wish I could change the path your life has taken in so many ways, there is one thing that I would never, ever change, and that’s you. You’ve taken your torrential first year well and truly in your stride. Much better than I have, for sure. Even though you were the one lying in a hospital bed, just about surviving on a failing liver, you kept our spirits up. You kept us laughing, and you kept us loving. You gave us a reason to keep going when everything felt so bleak, and I felt so trapped, that I didn’t know what to do or where to turn. How you’ve been strong enough to get through all that’s been thrown at you, and to do it all with such character, just blows my mind. You’ve been such an inspiration; you’ve taught me so much about life (and about myself), when it should have been the other way round. It’s not how things should have been, but you’ve made me strong enough to face what has to happen in our world now, and for that I feel truly lucky.
And now, you’re becoming a clever, sweet, cheeky, funny, cute, good-natured, charming little boy. You’re learning so much every day, and the excitement you show at each new achievement is just amazing. It doesn’t matter whether we’re just hunkered down at home with the curtains drawn and CBeebies on the box, or whether we’re off out somewhere, you give us so much joy. It’s such a privilege to be your mum, to be the one to spend the days with you. You take my breath away every single day.
So thank you. Thank you for being so amazing. Thank you for being so strong, so loving, for looking after me, and for making me who I am today. And thank you for being you.
Happy birthday, my darling boy. Here’s to many, many more.
It’s got my head in a bit of a spin. A year ago, I’d just started maternity leave. I was happily nesting, eating cake and fantasising about what life would be like when my little boy came to greet us, totally oblivious to what the year had in store. Now, looking back, it all feels very surreal; blurry, yet very vivid at the same time. Somehow, time managed to slow down while the year flew by, and now we’re here. We’re nearly 16 weeks post transplant, we’ve been at home and hospital free for nearly three months (the longest EVER – touch wood, of course), and we’re fast approaching his first birthday. I feel like I don’t quite know how we got here.
Even though I’m obviously really super mega excited about it, I also feel a tinge of sadness when I look back over his first year. When I think about everything he has had to go through and overcome to get to this point, I can’t help but feel that way; no parent should ever have to question whether their baby will make their first birthday, but as his liver disease progressed, we did. I also feel a bit sad that we can’t throw Hugo a huge party to celebrate. Yes, I know he’s not going to know anything about it, and that throwing a party isn’t something I’d necessarily have done if things had turned out differently for us, but it’s one of the ‘normal’ things that I’m actually a bit miffed that we can’t do this year.
I know I shouldn’t really focus on it. I should just feel happy. But it’s hard not to reflect a bit; it’s just who I am. And honestly, I am INCREDIBLY happy and VERY excited. I also know that actually, we’re very lucky that we’re at home for his birthday (TOUCH WOOD!), as that has never been a given. We’ve made some tentative, weather-dependent plans – a picnic in the park this weekend with friends and family, and a trip to the zoo on his birthday. There will be a monkey cake and balloons, of course. And I know that wherever we spend the day, even if it buckets down with rain (as it has so far this week, grr) and we have to cancel all of our plans, we’re going to have a lovely day, because Hugo will be in it. We can’t fail to have smiles on our faces with him around.
My nearly one year old looking so grown up!
Other than my tendency over the last few weeks to think a bit too much about all of that, things have been really bloody good! We’ve had one full set of blood results back and are awaiting the latest EBV results, but everything – as far as we know – looks good. His LFT’s this week are still all normal, which is fab considering one of his immunosuppression meds was reduced to allow him to fight the EBV. And as for the EBV, it has come down from 2million copies/ml (which was up from 70,000 copies/ml) to 200,000 copies/ml, which they seemed to be happy with (although I don’t actually know what the level should be). They’re continuing with the fortnightly bloods for now, and keeping a close eye on it, as ever.
We’re hoping that he will be going down to monthly bloods very soon, because we’ve had a bit of news from King’s this week. We’ve been given a date for his Hickman line to come out! Obviously, we know from experience not to focus on the date itself, but the fact that it’s booked in is a real positive. It’s not for a couple of months, so we’ve got time to get his bloods stable and to the point that they’re definitely happy for it to go. We’ve found the Hickman line to be such a double-edged sword. On the one hand it has been such a massive relief to have it there, so we’ve not had to hold Hugo down for the doctors to prick him to take bloods or insert cannulas. But on the other hand it’s such a restriction – we can’t give Hugo a proper bath or let him roll around without a vest on, in case he pulls at it (which he tries to do) or gets it wet or dirty; it’s a direct line to his heart and a massive infection risk. So now we can look forward to relaxing around him a bit more, and letting him splash around in water again, but we’ve also got to start taking him to hospital to be pricked for bloods again. It also means another stay at King’s, another surgery and general anaesthetic for Hugo (he’s notched up more operations in his first year than me and Ross put together). Ultimately, though, it’s a really good thing; it’s the last piece of plastic leftover from Hugo being critically ill, the last telltale sign (other than his scar, of course), and it’s going!
In other news, Hugo started his physio sessions this week. Aside from us being absolutely soaked from head to toe by a passing white van speeding through a puddle on our way in to the hospital (about which I’m still fuming), and Hugo refusing to roll, prop himself up, or generally move at all while we were there after being a bit freaked out by one of the toys they wanted him to play with, it was pretty good. They went through some exercises for us to incorporate into his playtime to help him start to bear his weight on his legs and develop his core strength, and we’re already seeing a real difference! He can now plant both his feet on the floor with straight legs (before they were always a bit weak and ‘froggy’), and he can hold himself up on in the crawling position all fours on his own. All the while smiling and chuckling away at how exciting it is. I know this is going to sound really stupid, but even though I know that the reason he’s not done any of this yet is because of how long he’s spent in hospital, when I see all the younger babies achieving these milestones months before Hugo it makes me feel a bit of a failure. But hearing from the pros that actually, it’s just a lack of opportunity for Hugo that’s prevented him from doing it so far, and seeing such immediate progress, has really helped to snap me out of that particular mindset. He’s getting more and more motivated to move, and now I actually need him to slow down a little bit as I’ve STILL not baby proofed the flat…
At his physio session
Practising standing at home
Holding himself up on all fours!
So life, in general, is pretty good right now. We’re carrying on towards our own version of normal. Ross is fully back in the swing of work life, and I’m starting to think about going back to work now too, which fills me with all sorts of excitement and dread. We’ve had days out, nights out, baby playdates and visits from friends. I’ve somehow managed to stick to the exercise, although the weekly pizza has somehow wormed its way back into my diet (little sneak). We’ve got a mini break to the New Forest with the fam to look forward to in a few weeks, thanks to my mum. And Hugo is being a little gem to be with; he’s so happy, so cute, so funny, so lively and so loving, it melts my heart. He’s just so much fun to be around (even when his play starts to get a bit vicious and I lose chunks of my hair in his fists), and he seems to be changing and doing something new every day.
Collapsed on the floor after some rough play; you can’t see, but he’s holding me down by my hair!
Although he STILL won’t say mumma. He just laughs and says dadda when I try and coax it out of him. He’s a little monkey, but I wouldn’t change him for the world.
This is the first blog (for about four months, anyway) that isn’t going to be an update on Hugo, on how he’s doing. Partly because, really, there isn’t a huge amount to say at the moment (YAY). But mostly because this blog isn’t about Hugo, or us. It’s about the people that got us through the last few months, to where we are now; it’s about Team Hugo. During this journey, and where it has taken us so far, we have met some incredible people with equally incredible talents, and we’ve been touched by the overwhelming surge of support we’ve received at every corner. I’ve not really gone too much into this in my blogs so far, just because I really think that these people are so bloody special that they deserve more than a cursory nod here and there.
So here goes.
Anyone who knows me, or who has kept up to date with the blog so far, will know how pro-NHS I’ve always been, and how fiercely protective I am of it now. That’s because it is just purely and simply a bloody wonderful thing – I absolutely love it. It doesn’t even bear thinking about where we would be right now if it didn’t exist, or if we lived somewhere else in the world. We would either be financially destitute, or we wouldn’t have been able to get Hugo the treatment he needed. But we’re not in that situation, and that is 100% because of the NHS.
Aside from the specific people I’m about to mention, there were SO many people that were part of Hugo’s care at King’s. Doctors, consultants, the ward matron and housekeepers, anesthetists and the rest of the surgical team, Clinical Nurse Specialists, intensivists, dieticians, sonographers, radiologists, pathologists, occupational therapists, physiotherapists, social workers and psychologists… All do such varied roles, but each made such a huge difference to us – and they’ll continue to make a difference over Hugo’s childhood as he remains under their care. Each of them really does deserve their own tribute, but then I don’t think this post would ever end. So to all of these wonderful people, I just have to say thank you for being there; whether you were there on call in the middle of the night or as part of your routine day, you made a REAL difference, and one we will never forget.
It goes without saying, of course, that the nurses and doctors at QEQM are equally brilliant. They’ve also provided a lot of friendship and support, and shown great warmth when we’ve been on Rainbow. After being in and out like a yo-yo for the first part of the year, we then didn’t see them for over three months, and they still remembered all of us when we ended up back there. It makes our inevitable trips to hospitals less daunting, which I guess is the best we can hope for.
It’s hard to know what to say about the nurses that we got to know at King’s. This is a team of people that work several 12 hour shifts a week, on top of their studies, courses and catch-up admin they have to do after their shift. They are dealing with very poorly children, some babies just days old, and anxious parents. Yet they do their job with such unassuming kindness, care and attention that it doesn’t really feel like they are working. For me, while I was living on Rays for nine weeks, it really felt like we were all in it together. They comforted me when I was upset, they got me tea when I was struggling, they babysat Hugo and sent me away to Ronald McDonalds for some catch up sleep when I was wandering around like a zombie. They let me have nights off with Ross to get some quality time together, and mocked us for leaving hospital to go and watch hospital dramas. They listened to my rants and ramblings, and always put up with my moods with understanding. They took the mickey out of my sleep talking. I got the girls opinions of some dodgy purchases (I accidentally ordered a very dodgy pair of hairy trainers – don’t ask). They really took the time to get to know me, Ross and Hugo; they became our friends. I still feel a bit bereft without them. They are just absolute angels, such unsung heroes, and I wholeheartedly love them all.
Seeing Justine and Gill (Hugo’s advocates) really became a highlight in the day when they were around. They just did so much for us over the weeks we were there. They helped to alleviate our fears, and answered our often confused and difficult questions. They always really fought for Hugo’s corner, making sure they asked the right people the right questions to get the preferred outcome. They always came for a chat and a play with Hugo before or after ward round. Both of them really helped to keep me grounded in being Hugo’s mum, and reminded me of that whenever things were starting to get the better of me. They made me laugh, often (Gill, in particular, when she pointed out my unfortunate builders bum to the passing ward round – consultants and all!), and they appreciated and encouraged my love of wine. They are just genuinely lovely, kind and funny women, and I really miss them both. I know they know just how much their friendship and support meant to all of us.
I had a little less contact with Fiona, Ross’s advocate, but she was equally as lovely. Hugo’s transplant wouldn’t have happened as it did without her, as she does the unenviable task of coordinating the living donor programme. I clearly remember our first conversation, where she told me that her interest was not with Hugo, but with the donor. I remember being a bit taken aback by this, but when we met and she went through it, I totally understood why she had to be so firm – she’s dealing with parents of very poorly children who, quite understandably, want (actually, need) their child to be top priority, so would often have high-running emotions (yes, even me – I know, you’d never believe it!) And she does an incredible job. They have to make sure that they’re not going to put someone’s life or health at risk unnecessarily by going through the living donor programme – yes, Hugo needed a liver, but if it would have caused harm to Ross, it would not have happened. Everything she did was to ensure that Hugo DID get his liver, and as soon as possible, but in the safest way to Ross. And then, on the day, she was there in her scrubs, in and out of the theatres, keeping me informed all day. And always with a kind smile on her face. She, like Justine and Gill, made everything so much more bearable, and we’ll always have so much to thank them all for.
I always thought that the surgeons would be among the more arrogant of the people we would encounter at hospital (I blame the TV for this impression) – surgeons have to be super confident to do their job, and get paid a fair whack to do it, so that would mean a big ego, right? No, wrong. We had two top surgeons in charge of Hugo’s transplant. Professor Nigel Heaton, who was on Ross’s side of things, and Hector (I don’t actually know his surname – that’s how informal it was) on Hugo’s. They’re both at the very top of their fields, which was reassuring as I had to put the lives of my son and my husband in their hands. What really struck me about them as I got to know them was their unassuming nature. Hector was so gentle, kind and friendly – he would always pop his head in or stop to talk to us when he was on the ward, asking after Hugo. I had many bear hugs with Hector, he was just so comforting. Prof was more reserved than Hector, less chatty, but never rude or obnoxious with it. I wanted to give him the biggest hug once the transplant was over, too, but opted for a handshake instead. I am just so incredibly in awe of what they do. At the end of the day, they saved my son’s life, and they safeguarded my husband’s. There will never be the words to express just how grateful I am that we had such wonderful, talented men doing everything in their powers to do that. It’s very humbling.
Prof Heaton with Ross and Hugo
Not quite a bear hug with Hector
Ronald McDonald House
The Ronald McDonald house really was a haven for us while we were there. The house is just so full of warmth and a sense of compassion. Each and every time my mum, sister, Ross or I went there we were greeted with a friendly face and conversation. The facilities are just amazing; it really helped to feel like you had some semblance of a home life. There is a misconception, I’ve found, that they are funded by McDonald’s restaurants; this isn’t true. The charity boxes you’ll find at the tills go towards the charity, but they don’t get much other support from the chain. Nor are they government funded. They provided us with such wonderful – and tangible – support; there is no way that we could have afforded for anyone to be with me in London as much as they were without the house, and we are all so incredibly thankful for that.
One thing that has really struck both me and Ross during this is how incredibly lucky we are with our employers – Canterbury City Council and Holiday Extras. I’m still on maternity leave, so I’ve not had to take any time off so far, but Ross has obviously been working full time since Hugo’s diagnosis. And his work could not have been more supportive. They’ve enabled him to be there as much as he could be, encouraging him to take the time to be with me and Hugo, letting him put his family first without any worries or guilt. It sounds such a simple thing, but it’s not something that would automatically happen in this situation, and I am so grateful to them for allowing Ross to support me as much as he’s been able to. I went to see my work just before we ended up on our extended stay, as I was worried about what would happen when my maternity leave ended; I knew I wouldn’t be able to return to work when they were expecting me to, but I didn’t know what that would mean. I didn’t want to lose my job. And I haven’t. They’ve basically told me that my job will be waiting for me as soon as Hugo is well enough to go into childcare. I thought that would be the case – they work very hard at being a top employer – but it’s such a comfort to know that. We’ve got a tough few months ahead now my maternity pay has stopped (something that has been alleviated somewhat by our family), but at least I haven’t got to start again at the bottom of the pile somewhere I probably don’t want to work when the time comes.
The best mum and sister in the world
I’ll get onto the whole family in a minute. But I have to just say something about these two women. They are, without a doubt, the best friends I could have ever hoped for. They’ve been absolute towers of strength and support during all of this. Before we were in London, my mum would be here every day, doing my washing up, chores, shopping, just getting me through the day until Ross got home from work when I was struggling with it all. And then when we were in London she was there almost every week – often doing her crosswords, but there to keep me company and help in any way she could, big or small. Emily, my sister, has done so much to keep me sane during it all; making me take days or evenings out to be myself, talking to me late at night when she had work to do but knew I needed her, just always being there. They’ve somehow perfected the balance of letting me kick off or wallow when it was necessary, but also always calling me up on it when I was being unfair or unreasonable (something I know Ross will also be very grateful for!) I feel very, very luck to have had them there the whole time – they are the best mum and sister in the world, without a doubt.
Friends, family and relative strangers
We have had SO much support from friends and family, it’s been really overwhelming. The family have rallied round so much over the weeks and provided all sorts of support. They’ve driven back and forth from London to ferry either Ross, Hugo or all of us home over various discharges – sometimes at the drop of a hat. They looked after Ross when he came back from London first. They’ve provided shopping, dinners, and evenings off for the pair of us. Two of Ross’s sisters and his mum also set up a Go Fund Me page for us, to help us pay our bills in the period before I go back to work, which has given us such security and peace of mind to be able to focus on getting Hugo well, and not rushing him into nursery or childcare before his immune system is ready. They’ve given so much help, and we’re so grateful for it all.
Our friends have really kept us going. They’ve been so thoughtful and caring throughout everything, always taking the time to get in touch and ask how we all are, but what I really appreciate now that we’re home is the fact that they’re not pussyfooting around us. Many of our friends are also parents and they are, very rightly, not hiding or masking their own highs and lows for fear of upsetting us. We want to share in their joys and comfort them when it’s needed, too. Life goes on – something that is very easy to forget when you’re in the weird time bubble of hospital life – and it’s been so enjoyable coming home and slotting back into it. As much as our world totally revolves around Hugo, it’s also nice to be distracted from it and reminded about the wider world; that was something I really missed when we were up there, and something my friends have given back to me.
We’ve also developed a new and invaluable circle of support through all of this – the liver family. The mums and dads that we’ve met at King’s are the only people who REALLY get what we’ve been through with Hugo. Because they’ve been through it too. And even though they all have their own trials and tribulations to deal with, they still have the strength to offer advice and comfort (or a bottle of wine at the pub) when we really need it. They’re all incredibly inspirational and we feel like we’ve made some true friends during this journey, ones that we hope to keep for life. We’ve also had a lot of support from people we barely know, and some that we’ve never met. People who have commented on the blog, who have messaged me on Facebook, who have sent cards and presents to the hospital when we were there. Just random acts of kindness that are totally out of the blue and really lift our spirits.
It makes me feel very lucky, in amongst all the crap, to have such an incredible army of support behind us, that people are so invested in our baby boy. So to everyone reading this, whether you’ve been following Hugo’s journey so far or not, THANK YOU for being part of Team Hugo. We wouldn’t have got this far without any of you.
I’m starting this blog with a couple of apologies, I’m afraid. I’m sorry (again) for the huge delay in between posts, but Hugo has been keeping me on my toes more than usual – if that were even possible! I’m also going to apologise in advance for this one. You will know that I’ve made a real effort to stay as positive as possible during this whole journey, in my blog and in real life. But the last ten days have been tough.
It actually started off really, really well. Hugo was discharged from King’s on day 14 – just two weeks after his op! When Natalie, our nurse, told me a couple of days before that this was the plan, I burst into (happy) tears on her. It was really surprising, as I was expecting to be there for a month PT; the average recovery time is about three weeks, and it can often be longer if they are very poorly beforehand, like Hugo was, and have severe ascites, like Hugo did. So to be told after two weeks that he was well enough to go was just staggering. I’ll be honest – I felt it was too soon, but if they really thought he was well enough then we were happy to take it!
When Friday came, I packed up the house and the bed space, hugged everyone in sight, gave lots of people wine and cake, and eventually made it off the ward with my sister in law and her other half to make the journey home. Being back home after nine weeks away was really surreal – I had become so used to living in a tiny bed space with no privacy and just a curtain for a wall, I forgot how big my flat really was! I cried as soon as Amy and Dan had left – I was just so relieved to be back.
For the most part, being at home was totally and utterly lush. We didn’t unlock the front door for the weekend (apart from to let in a bit of shopping – after two months of solidly eating crap I was craving something fresh and home cooked). We did very little apart from getting used to our new routine and getting on with some proper playing. And actually, Hugo’s meds weren’t too daunting at all – they’re far easier than they were pre-transplant, at any rate! Hugo looked a bit bemused by the jumparoo, but soon remembered how much fun it was. I caught up on Hollyoaks (yes, trashy I know, but I love it) and lazed on the sofa with Ross, a Bud and a box of maltesers (which, I realised, taste so much better out of a box than out of a bag! Anyone ever notice that?!) Hugo slept amazingly well in his own bed, and I slept amazingly well in mine. I had marmite on toast for the first time in two months – a little thing, yes, but a luxury to me. Ross was thrilled to have his boy home for his first ever Father’s day. I got back in the kitchen and cooked dinner for us and for Hugo for the first time in months. Unfortunately, Hugo’s become too accustomed to jarred foods now, which I’m really gutted about; I love cooking and had planned to cook all of Hugo’s food when it came to weaning, so I was really excited about making him something fresh and delicious. But no, he hated it. Cheers, son!
I say it was perfect for the most part. Ross was still really fragile by the time we got home (let’s not forget that he was only two weeks post-op, too), so wasn’t able to lend a hand getting stuck in with any of the chores. Obviously, that’s completely to be expected and I was totally fine with it, but I wasn’t quite prepared for the relentlessness of the tasks at hand – tending to Hugo (including meds, feeding, playing, changing stinkybums, bathing, settling overnight etc), unpacking, doing washing, cooking, clearing up, washing up… those who know us will know that Ross is a very, VERY hands-on husband. He does a huge amount around the house (yes, I’m very lucky!) So going from being in the hospital environment, with nurses buzzing around to lend a hand 24 hours a day, to being at home without that support was a bit of a shock to the system.
On Sunday, Hugo was a tad unsettled. We put it down to the change in routine and environment, but I started to keep a close eye. He was feeling a bit warm, so I started to check his temperatures. It was going a bit high, but not to worrying levels. In the evening he was happy and chirpy again, giving us lots of laughs during his bathtime and going to bed happy. But from about 10pm, he started crying, and he didn’t stop – all night. In the middle of the night, he was radiating heat, so I checked again, and he had spiked to 38.3. So on Monday morning (day 16), two days after getting Hugo home, I was packing the car back up and getting ready to head back over to QEQM.
Even though I knew there were going to be bumps in the road (it was only Sunday afternoon that I was on the phone to my sister saying how I was expecting it, that it was nothing to be frightened of, etc), I didn’t handle Monday well. At all. I was almost at the anxiety attack stage – crying, couldn’t breathe, couldn’t stand. To be honest, I hadn’t expected us to be heading back to hospital quite so quickly, even though I had felt that we had been discharged slightly too early. It didn’t help that I was totally sleep deprived. Or that I had decided to leave the washing up from Sunday. Or that I thought Hugo looked a tinge yellow again, that his belly looked a tad bigger, and his pee a teensy tiny bit too dark – something I think Ross and my mum didn’t quite agree with, but the gut feeling – the instinct – was there; Hugo wasn’t right, and I couldn’t shake it. I called my mum quite early to come and help (she is affectionately known as “pot wash” at both mine and my sister’s houses), so she got on with the leftover chores and allowed me to prepare, and by the time we left I had got myself together a bit.
We spent one night at QEQM, which is pretty much a blur. They were really good when we got there – took Hugo straight into a room so he wasn’t exposed to the other kids on the ward, did his vitals and his bloods early, and left us to wait. About six hours down the line – by which time one of the lovely nurses, Jess (who actually used to work on Rays), had ushered me off to the parents room round the corner to get some sleep; she could see how I wasn’t coping and even though she wasn’t looking after Hugo, she really stepped in to help – the doctor came back with some results and started Hugo on IV antibiotics. The worry was that he had an infection, and his bile-related liver markers (bilirubin and Gamma GT) had both increased; his bili had riseen from 19 (normal levels) to 68. So I wasn’t going crazy when I thought he was yellower! The plan was 48 hours of IV antibiotics and then hopefully, he’d be ok to go back home.
However. As always. This is, of course, Hugo. He doesn’t follow a plan. He actually responded really well to the antibiotics; he slept amazingly well on Monday night, and was much perkier on Tuesday. But, on Tuesday evening, his poo went white. Not just pale – WHITE. And not just one nappy – three. I lost it; I went from an almost anxiety attack on Monday morning to a full blown panic induced meltdown. The first thing that entered my head was that it was all happening again. We’ve spent the last six months pretty much just focused getting Hugo through, getting him to the point where he was able to start being well, and he wouldn’t have the fated pale poo anymore, and suddenly they were back. I think my heart actually stopped for a few seconds when I saw it. I’m sorry if that sounds melodramatic, but it’s the only way I can describe it. The thought of having to do it all again was heartbreaking. The worry about what it could mean, and not knowing whether his new liver was ok, was just crippling. The doctor phoned King’s straight away, and when he came in to say King’s wanted Hugo back, I was actually relieved. I knew he needed to be back there. The fact that they decided to transport him by ambulance in the middle of the night was perhaps a bit unnecessary. Amy brought Ross over to QEQM so that I wasn’t on my own all evening, and he brought some more things for me to take to London (again, I had two t-shirts, and this time Hugo had pooed all down one of them). I was just so happy to see him; he gives me such strength, even just by being with us. It was the little boost I needed.
We arrived back at King’s at about 4am on Wednesday morning (day 18), and it was pretty much straight back to business. I was still shattered, but I immediately felt more secure. My mum dropped her plans and came up, as she has done every week since we’ve been here. The woman is my rock. Even though I’m happier here than at QEQM, it’s still not been easy. Because they’ve been trying to diagnose what is behind the white poo, they’ve had to do various investigations on Hugo; biopsies, MRI scans, abdiominal taps, all of which require him to be nil by mouth for a minimum of six hours. And many of which have been cancelled at the last minute (biopsies), or failed (MRI). They thought it was a stricture, a swelling or blockage of the bile ducts; it’s not. They thought it could be a possible bile leak (which is serious, and would require more surgery); it’s not. They’ve not yet investigated rejection, which surprises me, although I have faith in their thought process. And although I have faith in them, I found it incredibly hard having to starve my baby boy for four days running. Today is a fifth day nil by mouth, as they thought he still needed a biopsy, but we’ve just been told it isn’t happening again. I’ve tried to see their reasoning, but I’ve had a couple of breakdowns about it. And as much as they understand, they can’t put him at risk just to placate my instincts as his mum.
Now, we’re on day 24. Ross is up in London with us (my mum took the train home on Friday afternoon so she could drive him up on Saturday. Seriously. She’s my rock), so I’m feeling stronger than I have been. We had a family dawdle out on Saturday (Ross can’t go any faster yet!) which lifted all of our spirits. The glass of prosecco certainly helped mine! Hugo seems to be doing well, despite still not knowing what happened; Hector (his surgeon) said we may well not know what caused this particular blip. That’s fine by me, if we get past it. From what they have been saying, it sounds like he was possibly brewing an infection, which caused an inflammation in his bile ducts and has now been dealt with by the antibiotics. That’s what I’m hoping, anyway. His colour and his belly both seem to have improved, his pee is nice and clear and his poo has been lovely and yellow/brown/orange for three days now. He has been chuckling away at the most random things – the blue curtain, Ross pretending to be Daddy Pig, a chair. It definitely feels like he’s better. And I feel better for it. But I know the doctors won’t let him back home again until they are confident that they have treated whatever it is, or that it has righted itself. So he’s been treated for infection with IV antibiotics for a week now – that’s one possible cause dealt with. I did ask why they couldn’t just treat for both infection and rejection; it’s because they are at opposite ends of the spectrum for treatment. Infection requires antibiotics. Rejection requires steroids, which suppresses the immune system. So if he did have an infection, and they gave the steroid, they could well make him sicker. They really have always got his back.
I think the hard thing this week has been being suddenly thrusted back into the unknown, the unexpected. To know that something was up with Hugo, but not what it was or what could be done. Going home was such a high, but the week that followed has been such a huge crash that I’ve not coped at all well. We were the closest we’ve been since April to having our lives back. Being home consists of so many little things – not living out of a suitcase, having space and toys for Hugo, being able to eat well and have proper tea again – together, they make a massive difference to daily life. Hugo also turns nine months old today, too, and I think that has had an effect on me. My maternity leave is essentially up, but I’m nowhere near able to go back to work. I’ve been reflecting on the maternity leave I’ve had, and I feel really sad about it. I’ve spent most of it in hospital with Hugo, which wasn’t part of the plan at all. We’ve not been able to do anything that we had dreamed of doing, and it feels really unfair. I’ve tried really hard not to let myself rue the situation and what we’ve missed out on, as it’s totally out of our control, but it’s hard to keep that up all the time. Hugo has given us a huge amount of joy during his nine months, yes, and we really do feel very lucky that he is our baby. But this last week I’ve also felt the grief for the life we have lost. I just want to get to the stage where we’re home for more time than we’re at hospital, able to enjoy our family life, and to just be happy again.
I know that, actually, we’re not in a different situation than we would have been had we not been discharged on day 14. I expected to still be here at this point in time. But it’s that blasted rollercoaster again. I had my home life within my grasp, and as much as we loved our weekend at home, it being so short lived was a blow. I’m relieved that I followed my gut again, though, and that they started treating him early. Instinct is a powerful thing, and I’m glad that’s one thing I don’t have to leave up here when we do eventually get out of King’s for Hugo’s homecoming #2… although this time, I’m definitely going to smuggle one of the nurses home with us as well. You just can’t be too careful, and I know my little flirty Bertie boy would love it!
This should have been the update we’ve been gearing up to since February, the one where we could tell everyone that Hugo’d had his transplant. But we seem to be living in a world of big fat ‘shoulds’.
It wasn’t long after my last post, where were given the green light for Ross to be the donor, that we were given a date for the transplant to take place. The date was set for Tuesday 12th May; we were given a week’s notice. The week then kind of slipped away from both of us. Even though there wasn’t really anything to prepare, as such – we’re already up at hospital with everything we need – there was still a kind of pressure on the days leading up to the transplant. I was making plans for company and support for the day of the operations, while Ross tied things off at work for a couple of months and started to ready himself for the surgery.
But – I’m starting to feel like I’m a bit of a broken record here – things never seem to be that straightforward with Hugo. Towards the end of the week, I noticed Hugo started to sound a bit congested. I started to worry, despite Ross trying to reassure me. I mean, Hugo’s luck had finally started to turn and things were happening… right?
Well, no. The nurses also noticed, and did some swabs to check for viruses. And, of course, they came back positive. Hugo had picked up the adenovirus, which is just a common cold, but is enough to put a hold on the transplant. We knew that any bug could risk the surgery going ahead; the risks associated with suppressing his immune system while he’s poorly is significant, and there is also a risk that he could need to stay in intensive care for longer, possibly be intubated and on the ventilator longer, and develop other complications such as pneumonia. In short, putting him through a transplant while he’s poorly could kill him.
So even though he had barely any symptoms, on Monday he was deemed poorly enough to postpone the op. To say we were gutted is an understatement, but we both totally agreed with the decision (especially when he spiked a temperature on Monday night). The fact that one of the lead consultants told us that he wouldn’t agree to his child going for the surgery cemented the seriousness of it in my mind; we hear so much clinical speak on a daily basis, to hear the human perspective from a senior medical professional took me by surprise.
Even though we agreed with the decision, we had hoped that it was going to be a matter of days until he could go again. But the new date we’ve been given is a long way off (Ross and I have bickered back and forth about whether to tell people the date at all, and have settled on a ‘not yet’ approach – it’s too early to tempt fate on the new date yet. So for those who were going to ask – don’t). This is where I’ve got really angry – not an emotion I’ve felt much of during our ups and downs so far. But the length of time we have to wait now to get Hugo better made me angry. And it won’t come as a shock to those who know me well that I’ve let people know that!
One of the reasons for the delay is the lead surgeon is on a sponsored bike ride to Barcelona for the next two weeks. Ok, granted, he’s raising money for the liver unit here at King’s. It’s not like he’s off on a jolly somewhere. It’s a good cause. And yes, there are several other factors which all contribute to the next available surgical slot falling into next month; all I keep hearing is ‘logistics’ – I used to love logistics. Now I bloody hate them! But the fact that Hugo’s operation, recovery and – ultimately – bringing him home and getting our lives back is delayed by weeks because of a bike ride and logistics made me mad. I mean, REALLY?! Even though he’s actually quite stable at the moment – he’s not needed a tap now for 12 days, although he’s having more regular albumin to try and keep the ascites under control – he is still deemed in urgent clinical need of a liver transplant. It’s just too bitter a pill to swallow for me; it just doesn’t make sense.
We’ve now found out, though, that the adenovirus is in his blood (we were hoping it was just respiratory), which means that it is unlikely he would be deemed clinically well enough for the transplant for another week, at least. So we’ve now managed to find a way to accept that this is just the way it’s meant to be. Yes, it’s going to be shit being in hospital for another few weeks, but it’s something that we’ll manage because we have no other choice.
So, the silver linings. We always manage to find them! Because Hugo has a respiratory virus, we’ve been moved out of the nursery into a room, so we’ve got privacy and some peace and quiet! Which has made a huge difference to my sanity, if nothing else. I’ve been telling pretty much everyone I see that I’m not taking Hugo back into the nursery now before his op – I just can’t risk him catching something else and having another date cancelled. Everyone is very sympathetic to the situation, and they’re all being incredibly supportive, so I do believe this will be kept in mind with the ward logistics (gahh) as the weeks go on.
We’ve had amazing support from our families, as ever. My mum has been here every week with me, and this one was no different. My sister also came to stay for a night, which was really nice as I’ve missed her so much. Ross had to go back to work, which was difficult for both of us, but is here as much as he can be as always. And he’s taking a couple of days off so I can get home for a night or two and not miss seeing him over the weekend – I’ve been feeling increasingly homesick, and need a break from living in hospital to see my friends and be in my flat. But he gives me the strength to keep going up here and I wouldn’t be able to sacrifice my one night with my husband to do that.
As for Hugo, since becoming ‘poorly’ he’s actually been in a better mood than for the last few weeks, and he seems to be making strides in his play and development. We were given a set of velcro supports from the Occupational Therapist which has done wonders for his head shape; the illness has rendered him a little flat-headed on his right side because he’s not able to roll (although he now sleeps on his side – still with Mickey on his face, of course!) and has to spend so much time in his hospital bed. We’ve a little way to go, but he’s definitely less wonky! He’s taken the step from just putting things in his face to putting them in his mouth – spoons, toys, and chocolate biccies. He’s almost sitting up on his own – again, his belly is a hinderance, but he seems totally unphased by it. He’s learning new ways to play and reaching out for toys (or our faces) all the time. He’s almost laughing – his face and his eyes are already there, we’re just waiting for the noise now. We’ve been taking him out every day for a walk around the park (weather and treatment permitting, obvs), and he’s starting to notice and enjoy the new experiences – squirrels, flowers, and the wind in his face. And I’ve nearly taught him to high-five – I’m determined to achieve this before his transplant… I’ve got to have my goals, after all!
I’m just so bloody proud of how much he is learning in this environment. And again, I might be like a broken record here, but he makes it so easy to cope. He makes both of us feel very lucky, and to achieve that in the midst of this situation is quite something!
This week, we took a big step forward to getting Hugo well again. Ross finished his assessment to be a living donor on Friday, and after a very nervous two week wait following one of his clotting results coming back as out of range, he’s been given the green light to be Hugo’s donor!
Even though it’s finished on a high, it’s been a bit of a rocky week. We’re still at King’s with Hugo. And we were told on Tuesday that he’s not well enough, and is unlikely to become well enough, to take him home now before the transplant. Given the fact that we only brought him up here for a “straightforward” procedure, and only expected to be here for up to a week, to say this came as a blow is a massive understatement. For one, I didn’t bring many clothes; I brought enough to last a week and yes, there is a washing machine on the ward, so I’ve been able to stretch it out pretty well. But four t-shirts and pairs of pants can only last so long!
The thing that really hit me with this news is just HOW poorly Hugo has become. I know it must sound stupid – he’s got end-stage liver disease, after all! But we’ve moved from a progressive decline in his health to a sudden and unexpected drop. He was simply too fragile (even though he was stable) before his admission for the Hickman line to cope with two surgeries and the effects of these. It’s knocked him right off his perch. And the doctors – rightly so – have told us that it’s no longer possible (or fair) for us to try and manage his condition on our own from home. When we had him at home, we had some semblance of a normal life – at the very least, we were close to our friends and family, we had his jumparoo, his bedroom, our own comforts. All of a sudden, we’re two hours from home, living on a ward with three other poorly babies, their families, nurses and bleeping machines (and this is all night. ALL NIGHT. Sleep deprivation has taken on a whole new meaning). It’s a pretty sobering change of circumstances.
On top of that, we’ve also decided that we should re-home our cat, Ronnie. We’ve had her for six years, and I’m totally gutted. But we’re hardly ever there now, and even though we have amazing neighbours who look after her at the drop of a hat (and who she loves), it’s just not the same as her having a family to live with. She’s still at home, and we think we’ve found a loving owner for her. But I hadn’t said goodbye. So I made a quick dash home mid-week, arriving back at my flat at 9.30pm on Thursday night after a stop off at my sisters for dinner, and leaving again at 7.30am the following morning with our transplant case in tow, and having said goodbye to Ronnie.
So from the practical side of things, we’re now more prepared. Which for us (and me in particular) is a massive boost when it comes to coping with the rollercoaster that is living in hospital. We’ve also moved to a bigger room in the Ronald McDonald house, one with a bath and which can fit a travel cot in, so we have space to take Hugo there (when we can), and also for my sister to bring my niece up. I’ve actually upacked my bag (not something I normally do when away from home, even on holiday), and am now living out of a wardrobe again, rather than a suitcase. It’s a small thing, but it makes a big difference.
And always being ones to try and find the silver linings, we’ve also relinquished the responsibilities for Hugo’s medical care to the nurses. We’ve got a huge amount to think about and take in while we’re here, so not having to keep on top of his medications, for instance, and not having to be the ones giving them to him for a while, is a welcome break.
Despite everything the doctors have thrown at him – more albumin and increased diuretics – we’re no longer able to keep his ascites under control. This week it started to affect his breathing and his heart rate, and his tummy went from about 52cm when we first came up to King’s, to 60.5cm, and was tight as a drum. The only option when it reaches this stage is for them to tap some of the fluid off. It provides some immediate relief, but it’s only a temporary solution, and it comes with risks. We didn’t realise quite how temporary it is. He had his first tap on Wednesday, after an urgent ultrasound following some concern about his respiratory rate, and they removed 500ml of fluid. The difference in his appearance, mood and respiration was instant! But even by the Thursday morning, the effects had dwindled. He needed his second tap on Friday. This time, they took 675ml and he lost 3.5cm. But in less than 24 hours, his belly had already gained back 2.5cm. The problem is that every time they do a tap, they have to put a needle into his abdomen, and with that comes risk of infection. They could leave a drain in, but that carries even more risk. In the lead up to transplant, it is vital for him to be in the best health possible. It’s a very fine balance, but he’s reached the point where he can’t manage comfortably without them.
Amazingly, in spite of how poorly he is, how unstimulating the environment is and how uncomfortable he must be, he is smilier than ever at the moment. And even though he’s really struggling to tolerate his milk – he’s now on a slow continuous feed just to try and get as many calories into him as possible in the time before transplant – he’s doing really well with his solids. His favourite is rice pudding – he smiles all the way through breakfast when this is on the menu. His resilience is shining through once again. I’m astounded by him, and he’s given me the strength to get through the next few weeks. Even though the situation is shit, he reminds me every day of just how lucky we are to have him.
So with all of this bearing down on us, the timing of Ross’s assessment couldn’t have been any better. We now have a light at the end of the tunnel.
The biggest hurdle we had was his haematology appointment. This was what we’d been worrying about since we found out his blood results a fortnight earlier. I went down with him for the meeting, only to be turned away – the process has to be so independent, I wasn’t even allowed to sit in. And as it turns out we didn’t need to be so worried. The particular clotting function under query (protein C), Ross was told, is out of range, but is not abnormal. There is zero additional risk to him having surgery.
He also had most of the remaining standard appointments – CT scan, psychologist, anaesthetist. TIck, tick, tick. All that’s left now is seeing the consultant hepatologist, and his independent assessment. Both formalities. It’s frustrating for Ross that he has to come back again to get these bits tied off, but as soon as they’re done we will be moving very quickly towards the thing that has been our focus for the last two months – Hugo getting a new liver.
Although we’ve pushed for a date, Fiona (the coordinator) can’t give us anything for definite until absolutely all the boxes are ticked. But we’ve been told that the transplant will happen within three weeks. Possibly two. Because Hugo is so young, they don’t necessarily need two theatres to get it done, which is often what can prolong the wait. He will remain on the list for a cadaveric liver, so if one comes up in the meantime, he’ll have that. Either way, by the end of this month, Hugo SHOULD (I can’t yet say will, as I don’t want to tempt fate) have his new liver and be well on the way to recovery.
Now, we’ve got the next phase of this journey to contemplate. For Ross, it’s a major operation, and up to three months off work to recover (the fact that driving is central to his job playing a big part here). I know that he’ll do amazingly. And seeing what this news has done is so uplifting – he’s beyond happy. He really wanted to be the one to help Hugo – to have matching scars and a bond that will tie them for life (well, an even bigger one than they have already). Now, he can. For me, it’s a case of getting my head around what that day will bring – both of my boys having major surgery on one day is a very scary concept. Ross will be in theatre for up to seven hours, Hugo for around ten. They will overlap. I know I won’t be on my own; my mum will be with me every step of the way, as will Ross’s. But it’s not going to be easy.
For Hugo, though, it’s a new lease of life. We’ve been told what to expect from all angles – the scary stuff as well as the good. But I can’t focus on the scary side – what it will be like seeing him in intensive care. Or at least, I’ve got to try not to think about it. Instead, we’ve got to focus on just how well he should be after. There’s still a long road ahead – with rejection among one of the many hurdles to encounter along the way – and it won’t be easy, but the success rate of transplants is so good (much better than the Kasai) that we can really start to think about Hugo being on the other side of this. We’ll have a Hugo without the yellow skin and eyes, and with a normal belly. A Hugo without his NG tube, with his old appetite back. Our Hugo. The thought fills us both with so much excitement – and the fact that it is now almost in our grasp is just a dream (almost) come true.