Days 275–380: the first liverversary and mummy wobbles

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.

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What a difference a year makes!

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.

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.

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.

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.

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My boys at the beach on Father’s Day

Days 177–274: happy days!

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.

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Happy to be nine months post transplant!

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.

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.

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.

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.

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Happy Woodings xx

Days 94–109: milestones

Hugo turns one in a week!

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.

Cheeky monkeys
Cheeky monkeys

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.

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!

Proud of my boy and how far he's come
Proud of my boy and how far he’s come

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…

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.

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.

Days 59 – 93: three months on and National Transplant Week

It’s hard to believe that Hugo’s transplant was three whole months ago. Where on earth has that time gone?! I realise that I’ve not written a blog, or given a Hugo update, for a while; we’ve had a pretty busy month, and thankfully it’s been without a single trip to hospital. August was officially full of home, fun and making memories. In fact, I think this is actually turning into our longest stretch at home with Hugo ever. Since he’s been born. TOUCHING WOOD!!

Before I get onto the Hugo update, I just wanted to do a bit more canvassing on behalf of the organ donation community. Tomorrow (Monday 7th September) is the start of National Transplant Week. The demand for organs is on the rise, due to a mixture of an aging population, alcohol and obesity. But there are fewer transplants happening; there are three people reportedly dying while waiting on the list every day. According to the British Liver Trust, 96% of us would take an organ if we needed one, but only 29% of the population is on the Organ Donor Register. It just doesn’t feel right; it DOESN’T ADD UP. Ross and I recently watched the BBC documentary, Transplant Tales, and we were shocked to discover that 40% of potential donor organs are refused by the family. This is one of the highest refusal rates in Europe. It’s not enough just to sign yourself up to the register; the NHS relies on your family’s consent to allow them to fulfil your wish. So this week, there is a call for everyone in the UK to discuss organ donation. Sign up to the register, but more than that, tell your loved ones what you would like to happen after you die. Talk about it. Actually, scrap that. Shout about it. Make it clear what your wishes are; one conversation could be the difference between you giving a desperately needed second chance to another family, or that opportunity being missed.

Of course, we didn’t end up needing a donor organ for Hugo. We were lucky enough that we could go down the living donor route. But this doesn’t detract from how we both feel about organ donation; we still lived on the torturous tenterhooks of the waiting list with Hugo for three months. He probably wouldn’t be here with us now, heading with great strides towards his first birthday, if he hadn’t had a transplant. His new liver has absolutely transformed him. We are living now, not just existing, not just waiting and watching.

This is a feeling that is only strengthened by the amazing and incredibly inspirational kids (and their families) we’ve met since we were thrown unexpectedly and unwillingly into the liver world nine months ago. Babies and children who suffer from an array of health problems, whose only chance of survival is to receive a life saving gift from a total stranger. Some of these kids have had their transplant; some are still waiting. We are lucky to be able to count these families as our friends, and watch with absolute joy and awe as they fight, thrive and survive against the odds. We go through their journeys with them, as they share in ours. If you ever needed another reason to sign up, then these kids are it.

We met all of these kids at some point during our various stays at King’s. All of them have had a new liver for different reasons. Eli had an liver disease that was so rare, they had to come up with a name for it – Notch 2 gene related liver disease; Tilly, Sam and Mali all had Biliary Atresia; Jess had pancreaticblastoma, a very rare form of cancer; and Harry had acute liver failure at 11 years old. They are all so strong, and such examples to all of us – all of the above pictures are post-transplant. They, along with anyone who has ever received a new organ, are the faces of National Transplant Week. They are why we need to turn the stats around. 29% of the population on the organ donor register?! It’s not enough.

So please, if there is one thing you do this week, it’s have that chat. And then tell the world. Get on Facebook, Twitter or Instagram, and use the hashtag #sayidonate and get people talking. Do it… Please.

As well as it being the start of Transplant Week, Monday also marks another milestone for us. After three months, Ross is declared ‘officially’ recovered and returns to work. He’s done incredibly well – for a man who can’t stand mess, and who happens to be married to a somewhat lazy woman, he must have been chomping at the bit to speed up his recovery at times. And aside from the few instances he’s been told off (both by me, and by King’s), he’s been very patient and let his recovery take priority. We’re both looking forward to him going back to work – it’s another step towards that thing we call ‘normal’, even though we don’t really know what that is anymore. It goes without saying that I’m incredibly proud of him.

As for Hugo… In general, he’s been really well. It’s not been totally smooth (when is it with Hugo?!), but nothing has happened that hasn’t been manageable. When his last bloods came in, the initial results were encouraging – liver function was normal, Tac levels were stable – so King’s told us his bloods would be going to monthly, a really positive step forward. But a few days later, we found out that his EBV DNA was raised. EBV is the virus that causes glandular fever. It is very common, and most people’s natural immune system is enough to keep the virus in check. But in immunosuppressed people, not only can it develop into glandular fever and result in that person being very poorly (and probably in hospital), but it can react with one of the meds and develop into PTLD – post-transplant lymphoproliferative disorder: cancer. King’s have reduced Hugo’s immunosuppressants to allow his body to fight the virus, and told us to watch out even more carefully (although I’m not sure that’s even possible) for signs of illness. This leaves him with a slightly increased risk of rejection, but this is something we’re going to have to get used to – the balance of risks being managed and decided by someone else. We have faith that the team at King’s know their stuff, and are always acting in his best interest. He’s had some repeat bloods now, and we’re just sitting tight for the EBV results. So fingers crossed, everyone!

As much as we feel like we’re settling into our groove now, when it comes to doing stuff with Hugo outside of my immediate comfort zone (that is, being at home, or out with Ross), I’m still struggling a bit. Yes, we’re having loads of fun, living life to the full and we’re making loads of lovely memories, but we’re still doing this within relatively tight boundaries at the moment. I want nothing more than to be able to completely relax and enjoy life as it is, to not worry about whether or not our plans might pose a threat to Hugo. I would LOVE to be a mum who could just take their baby to a social event or play group without a second thought, one who could happily hand her baby round groups of people without having to worry; not only is it good for him in developing his social skills, but he’s becoming such a heavy and wriggly lump now that it’s exhausting keeping hold of him! But I just can’t be that person… not yet, anyway.

Now that we’re starting to get back into (our own version of) normal life, we’re faced with the reality of what Hugo’s disease and treatment means for him, and for us. Although he’s no longer battling with end-stage liver disease, and he’s essentially healthy, he’s still not a ‘normal’ child. His liver disease has not been ‘cured’, it has been (and is still being) treated. On the face of it, he looks totally well, like any other child of his age, so I can understand that people think he’s totally ‘better’. But he’s at much more risk than he seems, and it can be hard to balance that knowledge with functioning in day-to-day life. I’m still too nervous to take Hugo anywhere crowded, so I either don’t take him, or I don’t go. We took him to a family wedding last week, and although the day was beautiful and it was amazing to be out with the family, I could also feel myself becoming increasingly anxious as the day went on; once he was at home being babysat for the evening, I finally felt able to relax. It still felt too soon. I’m slowly getting better at rationalising the risks and my need to be in control. I don’t feel myself physically tensing up when I sense a risk anymore – not as much, anyway – but I’m still a complete slave to antibac. The thing is, I know that as time goes on, he’s going to go off to nursery, to school, to work, and I’m not going to be able to protect him in the way that I can now. I’m just going to have to figure out a way to deal with that as and when the time comes, but for now I’ll keep doing what I can to protect him.

Anyway, Hugo’s really thriving in his own environment now. He’s a bit behind where he might have in his development been at this age, but I think that’s totally expected given how long he has spent in hospital beds during his short life so far. But he’s catching up incredibly well; at their recent visit, the local Occupational Therapist was surprised at how well he was doing, as his referral from King’s had suggested that he would need a lot of attention from them. He needs some physiotherapy; although he is rolling now, he needs some help in developing his leg strength to start crawling and standing. He is always trying to move about, so I’m sure once he’s shown how he’ll be off (that reminds me, I really need to baby proof the flat…) He’s taken to teething on my chin – something that’s becoming increasingly painful as his teeth get closer to coming through (any day now, we hope – he’s still 100% gummy bear at the moment!), but I love it all the same. He’s turned into a total chatterbox (dada, nana, bla bla, no and blowing raspberries are his favourites. Not mumma, of course), and he’s developed some incredibly cheeky characteristics. He knows when he’s being cheeky – he has a telling glint in his eye. It’s beautiful.

As the days go by Hugo is becoming more and more our baby, rather than our baby with a liver transplant. For so much of his short life, he has been defined by what he has been going through, and it feels as though we’ve finally turned a corner with this. Yes, it’s still a major part of him – it always will be, and we have absolutely no problem with that. But it’s just a part of him now, rather than being his all. He’s just gone from strength to strength over the last few weeks, even with a virus lurking in the background. I’m just so proud.

I love my famalam
I love my famalam

A tribute to Team Hugo

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.

Nurses

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.

Melissa, Bethany, Emma and Niamh - just four of the beautiful Rays nurses
Melissa, Bethany, Emma and Niamh – just four of the beautiful Rays nurses

Transplant Coordinators

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.

Hugo and Mickey loving the Gill and Justine cuddles
Hugo and Mickey loving the Gill (L) and Justine (R) cuddles

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.

Fiona and Ross at the pub
Fiona and Ross at the pub

Surgeons

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.

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.

The house that love built
Ronald McDonald – the house that love built

Work

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.

Hugo loves a bit of HX :)
Hugo loves a bit of HX 🙂

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.

A touching card and present sent to us at King's the night before Hugo's transplant
A touching card and present sent to us at King’s the night before Hugo’s transplant

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.

Days 48–58: back to reality

We are now just over eight weeks post transplant. That time has just flown by in such a whirlwind. We’re over the initial, really crucial first six weeks, and Hugo is doing so well (touch wood, fingers crossed etc. As always.) We’re not yet in a position to relax the rules though; following those is what has got him this far. It’s been over two weeks since Hugo’s last hospital admission, which is just incredible. I can’t remember the last time we’ve been this long in our own environment! Life in general continues to get better, more ‘normal’ (urgh), but that’s not to say we haven’t had our struggles.

The boys had their scheduled liver reviews at the start of the week (I don’t count this as a hospital admission). Hugo had the usual – bloods, ultrasound and examination. The ultrasound was vastly improved; the amount of fluid in the abdomen around the cut surface of the liver is now tiny, and the blood flows are even better than before. There were no concerns from the doctor, and we’ve still (seven days on) not had his blood results. I’m taking no news as good news on this one; something I hope doesn’t prove to be naivety on my part. We also had Hugo’s weigh in, and the little man has done amazingly well. He’s now just shy of 9kg, and is on the 43rd centile for his age. For a liver kid, that’s pretty awesome. We saw the dietician, and she was full of praise; she said that the work that we put into weaning Hugo before his transplant has really paid off, as he’s eating really, really well. It was a massive relief for both of us.

Ross’s review was straightforward. He had his blood tests and a chat with the surgeon, and was sent on his way. He’ll need one more appointment and an ultrasound within the next few weeks, but then it’s pretty much a case of “see you in a year”. His liver will be pretty much back to full size now. Looking back, it really feels like transplant day could have been yesterday, not two months ago, and the fact that his liver has regenerated already is mind blowing. Ross has done amazingly with his recovery. It’s not been easy; he started doing a bit too much too soon, so he got a bit of a telling off at hospital and was told to take a step back to get a bit more R&R in. I think he’s (understandably) got a bit of cabin fever from being at home so much; he’s not been at work, and been physically restricted by his recovery so not been able to get back to his social life quite yet. But he’s nearly there now. He’s been far more patient than I could have been!

At the moment I’m finding life quite surreal. I’ve ended up seeing the last few months from different perspectives, which has been a bit eye opening. I spent one lunchtime while Hugo was napping scrolling back through my photos, enjoying all the happy memories we’ve created since being home… And then I hit the pre-transplant photos. They really shocked me. That probably sounds weird – I was there the whole time, so I knew how ill Hugo was, what he looked like. But that’s the thing. I was there the WHOLE time. I witnessed the progressive deterioration and saw the change gradually, over a matter of days, weeks and months. Unlike others (including Ross) who weren’t there 24/7, and would see a big change in his colour or belly size when they came up to London, I didn’t experience that. I never really had that shock while he was poorly. So when I was scrolling back and saw just how massively distended his stomach was, and how yellow he was – particularly his eyes – I was in shock. I could finally understand why people would sometimes be visibly affected by seeing him. I’m glad that I didn’t see him that way when he was that poorly; I don’t think I’d have coped at all well if I had. It makes me even prouder of how far he has come.

What a contrast!
What a contrast!

Then, on Thursday, we caught up with a BBC documentary called Transplant Tales. It really hit me hard, actually. I didn’t expect it to; I mean, we’ve lived it after all. But seeing it from the outside in was very strange – the wait, the uncertainty, the fear, the nerves of being taken into surgery. It all resonated very deeply. They even had a cancelled living donation transplant due to illness! I’ve done a fair bit of campaigning, of raising awareness, of the organ donor register since we were thrown into this – something that has been really well received through the blog, with friends, family and strangers all signing up (thank you, everyone!) – and this programme just highlighted yet again how important it is. In the last year the amount of people on the waiting list was higher than ever, but the amount of suitable organs available had fallen. People are dying on the waiting list. It just doesn’t add up. I get that people will have their reasons for not being on it, but I’ve also heard people say that they don’t think their organs would be usable. My response to that is – let the NHS decide! Sign up, and give them the option. You never know what you have that might save someone’s life.

Anyway, it’s been a bit tough. I think I’ve had a bit of an adrenaline crash – the massive high of being home has slowly petered down to just being in normal life, and as amazingly wonderful that is, during the high I wasn’t really conscious of the massive adjustment period I was in. Adjusting to being back home, living with Ross again, getting used to Hugo’s new routines, being both back in control again but now also having to share the control and responsibilities with Ross – all of them have taken their toll a bit.

I’m also on a mission to try and lose the weight I gained in hospital, and have found weaning myself off the diet I had up there has been harder than I thought; in theory, I want to go back to healthy, home cooked food, but in reality all I want is chips, pizzas and burgers. The carb withdrawal hasn’t been great for my mood, and I probably (definitely) haven’t been very nice to live with, but nine days in now and I think I’ve passed that period of grumpy hunger. I’ve also started exercising at a place called Boost (run by a friend) with my sister. It’s bloody hard work (especially since it’s been about 18 months since I last bothered to get off the sofa for anything other than a snack), but so far it’s also been really enjoyable. I’m getting a kick out of knowing that I’m doing something positive to help myself. None of that takes away from the fact that diets pretty much suck though, and I do spend a fair amount of time each day (and night) dreaming about pizza.

I guess it’s just life taking it’s course again. For pretty much this whole year, I didn’t have my own life; I had only one focus and that was getting Hugo a new liver. Now that’s happened, and we’ve had a really good stretch of him being stable and well, life has cropped back up again. It’s unsettled me a bit.

Don’t get me wrong; I’m not unhappy. Yes, it has at times been harder than I thought. I’ve been stressed and not the best company. But I’m LOVING being home. We’ve had some blooming wonderful days together, and a few firsts for Hugo. He had his first go on a slide on a family day out in Canterbury (he LOVED it!), he rolled over properly, he nearly said his first word this morning (“dadda”. There goes my determination that his first word would be “mumma”. Or “liver”), he went in his big boy car seat, and he met his (now four month old) cousin for the first time (he couldn’t keep his eyes off him!) We’ve spent lovely, long, lazy days at home, and had meandering family days out; just enjoying being together with no restrictions. I’ve caught up with friends over a few beers (and been gifted one or two hungover lie-ins), and we’ve spent some lovely days in the sunshine with sisters, babies, grandparents. Hugo continues to giggle and gurgle, and smiles his way through his day. It just takes one look at him to remember that actually, everything will be ok.

Days 15–36: little things make all the difference

When your life is whipped out from beneath you, when you take your child to hospital for something relatively ‘simple’, expecting to take them home within a week only to be told that actually, you can’t, everything remains in a spin for quite some time. Living in hospital is a totally surreal existence, one that can only really be understood by those who have done it. I certainly became totally institutionalised up at King’s; barring two days at home and two days at QEQM we were there for 73 days, so I guess it isn’t really surprising.

Happily, we’re now back at home again. And Hugo has lasted an amazing ten days so far! Ok, we’ve spent two days at King’s in this time, but this was planned prior to his discharge. The team at King’s never figured out exactly what was behind his blip, despite all of the tests and scans. He seems to be over it, whatever it was. But because they didn’t diagnose, they couldn’t say for sure that it was dealt with, so they were nervous packing us back off home. Totally understandable. However, I had become rather desperate to get him out of there by then – he wasn’t receiving any treatment at that stage, only four-hourly obs by the nurses – so at ward round on Wednesday we pushed for discharge on the agreement that I would drive him up to London for day clinics whenever they wanted. And they agreed.

What a difference a month makes...
What a difference a month makes…

To start with, being back home was almost as surreal as living on the hospital ward. I had to find my feet again. It’s been a bit scary being away from the security blanket that the ward had become – and I’ll admit that I miss being there a little bit. Not in the sense that I want to go back; obviously, I don’t! But it became very familiar and I felt like I formed some real friendships up there (I’ve caught myself talking like some of the nurses, so I must have been around them for too long), so it’s strange not being around those faces and surroundings anymore. I’ve also been a bit nervous of getting too comfortable, just in case something else was to happen. But thankfully, things, so far, have been good. Really good.

There are so many things that I didn’t realise how much I had missed, how much I would appreciate when I got home. Little things that make all the difference. Such as…

  • Eating off a plate. Ok, that’s really boring. But it’s something I didn’t get in hospital – the canteen food came in polystyrene tubs and the ward only provided paper plates and plastic cutlery. Sure, I’d eat away from the hospital as much as possible, but even then you weren’t guaranteed a plate; burger on a board, anyone?! Chips in a mug?! NO. JUST NO. Put it on a plate, please.
  • Fresh, home cooked food. Mostly, anyway; I was pleased to see that the local pizza takeaway still had my number stored on their system. Having a fridge full of fresh food, and not having to label it ‘Hugo Wooding Bed 6’, is blooming lovely. I’m not even bothered with the washing up, something I NEVER used to do – it’s a symbol of normality to me, and I’m actually enjoying it… a little bit, anyway.
  • Being near my friends again. I’ve missed so much of their lives – growing babies, moving away, changing jobs; just life carrying on in general. It’s nice to finally feel like we’re back in the fold a bit. Everyone has been so excited for us to be back, but also really understanding of our restrictions at the moment, so we feel incredibly supported and very lucky. Which makes the whole transition a lot easier.
  • Living with my husband. Even though we spent as much time as we could together while we were at King’s, it felt a bit like we were back to dating – we’d spend a few hours together, maybe go for dinner, then we’d go and sleep in different places. It was a weird place to be in after seven years together, and it only really hit me how bloody awful it had been when I got back. Ross is still recovering, and is doing really well; his secret abs are healing (during his surgery, they discovered that his core muscles were actually really tight. Abs. They were a bit surprised, though, as no-one could see them…) and he’s getting stronger every day. Having some quality family time, on our own, and seeing my boys play together after everything they’ve been through is the best feeling in the world.
  • Having freedom. Having variety. Having my own transport. Not having to ask permission to take Hugo out for an hour. Being in charge again. Something that I definitely took for granted before, and something that I now appreciate more than anything. And we’ve certainly been making the most of it with slow walks and lazy days going where we want, when we want. Bliss.

Then, of course, there’s Hugo. Where do I start?! Well, first off, Hugo’s two day appointments at King’s were just that – DAY appointments. We’ve spent every night since being home in our own beds. His bloods are going in the right direction – his bilirubin is now nearly back to normal, his Gamma GT is now below 200, which is the best yet since transplant, although there’s still a way to go. His other key liver function tests are all within normal range, and his scan was fine. His colour is really good, his eyes are becoming beautifully clear, his poos are still nice and dark, and his pee clear. So far, so good.

Aside from Hugo’s clinical wellness, he has made one other major step forward since coming home. He drinks! Actually, he doesn’t just drink – he guzzles. We decided to try adding Nesquik to his milk last Wednesday, just to see whether it really was, as we suspected, the flavour that he didn’t like. And hey presto – just like that he started feeding, and he hasn’t looked back. He’s not even that bothered by taking his meds orally now. In fact, he’s doing so well that on Saturday, 116 days since we first started the NG feeding and 36 days post transplant, we took the tube out! This was a massive milestone for us – we didn’t think it would be out so soon. His feeding has been one of the biggest struggles we’ve had through all of this, and we’d have been happy if he was feeding and we could take the tube out by his first birthday in September, so for him to achieve it so soon is just incredible. And it’s made a huge difference to him, too.

Hugo has always been a happy boy. But his happiness has reached new levels, and losing the tube is a huge part of that. When he sees his bottle, instead of screaming and getting freaked out he goes crazy with excitement. Mealtimes have become so much more fun, as we don’t have to worry about him getting puree all over his tube tape; we can relax with him. He’s trying new flavours every day, and he’s even starting to eat some of the food I’ve made him. If he sees a Dairylea triangle, a yoghurt pot or a banana, he goes totally beserk. He HAS to have it fed to him NOW. He CAN’T wait, it HAS to be NOW. He’s a right little chunky bum, and it’s amazing. It feels like we really have our baby boy back now; he was always such a gannet in the first couple of months of his life, and we lost that part of him for a while. He has done us so, so proud.

Hugo is, in fact, so happy now that he won’t take naps. Even when he is clearly shattered, as soon as we put him into his bed he wakes up, ready to play. I genuinely think it’s because he now feels so well, he doesn’t want to lose any hours in the day to sleep. He has a jam-packed schedule of bouncing in his jumparoo, learning to roll (he’s really, really nearly there) on the play mat, sitting up, watching cartoons (normally Peppa Pig, which I absolutely love), flying, chatting, and laughing his head off to do. There’s just no more time for sleep.

I keep having to pinch myself to believe that this is our life at the moment; it seemed so far away at times, and every time it was nearly within my grasp it slipped away again. I know it may not last indefinitely; he’s going to face challenges as the days, weeks and months go on. But right now, this is what I imagined being a mum would be. He’s home, he’s happy and he’s thriving, and it makes the last few months so, so worth it.

My happy family :)
My happy family 🙂

Updates (days 1–13) and ground rules

Sorry for the delay between blog posts again. I know everyone has wanted an update. But I’m sure you‘ll all understand that my boys have been keeping me pretty busy… We’re now at day 13 post-transplant, and things (SO FAR!) seem to be ticking along in the right direction. Touch wood, fingers crossed, and all that.

Overall, Hugo is doing pretty blooming well. His bloods are generally within normal range now, with a few exceptions – and nothing the doctors are currently concerned about; they expect them to fluctuate a bit as things settle post-op. His ultrasounds haven’t highlighted any major issues. He’s now rid of all of the surgical plastic that adorned him for the first few days – arterial and neck lines, ventilators and breathing support, catheter and drain ALL GONE. And his jaundice is all but cleared (and his bilirubin is currently normal!!!) – his skin and eyes look amazing, even if I am scrutinising them somewhat for tinges of creaminess out of paranoia (and yes, my mum, Justine and Gill are all telling me off for doing this!), his wee is clear and his poo is dark! He’s still not drinking his bottle yet, but he’s tolerating the NG feeds and he’s doing incredibly well with his solids, and he’s gaining good weight – 100g in 4 days is pretty swift!

The important thing in amongst all of the ups and downs happening every day is that his liver is still working. His daddy’s liver is doing its job. His body is still dealing with what was, essentially, a major trauma, so it is natural for things to peak and trough as the days go on. They’re monitoring his bloods daily, keeping a close eye on liver and kidney function, immunity and immunosuppression. So far, it seems to be going quite smoothly. But this is Hugo, and he doesn’t like to do things the easy way. We’re all expecting a bit of turbulence. But one major comfort, to me, anyway, is that turbulence is expected, and isn’t by any means catastrophic. And because they’re keeping such a close eye, they’ll spot any potential problems at their very early stages. They’re on top of it.

The other thing I must mention is his mood. I’ve always been super proud of Hugo for maintaining such a sunny disposition throughout his life so far. And even though I was told to expect a difference in him post-transplant, I didn’t really think he could get much happier. Well, I was wrong. It turns out, he can be MUCH happier! On Wednesday evening (day 5), something suddenly clicked in him, and he just started kicking around, gurgling and smiling. It was almost as if he realised how bloody amazing he felt! And then on Saturday (day 8), he started laughing for the first time. Ever. A proper little belly-laugh – without a doubt the best sound I’ve heard in my entire life. It’s like he’s seeing everything again through new eyes – new, mesmerising white eyes – he never knew he was ill, so I guess he just didn’t know how well he could feel. It’s made me pretty giddy with happiness. The only thing missing from the picture right now is Ross, and home.

As far as Ross goes, he’s been back at home now getting some serious R&R in before Hugo and I eventually make it back. He’s got a long old road ahead of him – 3 months off work – but he’s doing amazingly well so far. He’s had his first check up since being discharged and the Prof is happy with everything. Luckily, he’s had his mum with him the majority of the time while he’s been at home and I’ve been up here, with other family members all pitching in with a food shop, taking dinner round or just giving him some company and a helping hand. It’s taken a massive weight off my mind, and even though I miss him to bits, it’s much better for him to be home than for me to keep trying to look after both of them up here so soon after they’ve both had major surgery.

As for home… well, I’ve deliberately not been asking the doctors about home yet. And although they’re starting to mention the H-word, I don’t want to get fixated on a possible date, only for it to move and then to feel deflated. So even though I’m dreaming of it – my sofa, my bed, my bathroom, my family and my friends – I’m making myself remain focused on getting Hugo home WELL. If that takes more time, then so be it.

We have, however, started to thing about home in terms of the reality of Hugo now being a post-transplant kid. He no longer has Biliary Atresia. However – and this is a BIG however – his transplant is not a cure, and even though it has made him better, in that he is no longer a chronically and critically ill baby, it is not the end of his liver journey. His challenges have not disappeared; rather, they have changed. So I wanted to explain a bit about what this means in real terms for Hugo, and lay out some ground rules for when we do get him home. I’m sorry if this dampens the mood of Hugo being well a bit. I don’t mean to put a downer on the party. But it’s necessary. Ross and I don’t want to take the fun out of us being home, or out of Hugo’s life, but the simple fact is we have fought long and hard to get him back to being well. And we want to blooming well keep it that way!

Everyone following Hugo’s journey will know that he needed this transplant to give him life. But, even though it’s given him life, it’s not the same life as most other children will lead. In order for Hugo to do well with his new liver, he will be on immunosuppression (tacrolimus and prednisolone) for life. This means that he will be much more vulnerable than most when it comes to colds, viruses and infections. Yes, over the years, Hugo will need to develop his own immune system. And to do that, he will need to be exposed to various germs. But right now, at the start of this new – and hopefully improved – chapter of his life, he does not need to be exposed to anything unnecessary. For Hugo, certain viruses can actually be quite severe, and infections can be very high risk. Something that may just be mild to you or me could hospitalise him – he won’t be able to fight things in the same way. He will also be at a greater risk to some cancers because of his medication; glandular fever (EBV), in particular, is a known risk to him developing post transplant lymphoma.

So while we want to have the most “normal” (hate that word) life possible for Hugo, I’m sure you can all understand we’re not willing to take any unnecessary risks when it comes to his health. Particularly with Ross in his line of work! So, until we specify otherwise, these are the rules:

  • If you have any symptoms of a cold or virus at all, however mild you may deem them to be – STAY AWAY!
  • If you have chicken pox – STAY AWAY! Chicken pox can be very harmful to Hugo, so we must be informed if you think he may have been exposed to it at any time.
  • If you have a cold sore – STAY AWAY! One of the major risks he is exposed to is the cold sore (herpes simplex) virus. It is very contagious and can attack the liver directly, particularly in the first year.
  • No kissing Hugo on the face. See all of the above.
  • Always, always, always wash your hands – thoroughly. It’s the best defence we have against anything, particularly infections. Whenever you are interacting with Hugo, you must must must wash your hands. Before any contact, before feeding, after nappy changes etc. So don’t be surprised if you want a cuddle and we ask you to do this first. Hopefully, in time, this will become a matter of course – we know it already is for our close family. And I apologise in advance for the horrid dry hands you’ll get if you are around Hugo a lot – these are now part of the territory.
  • Speaking of cuddles – please don’t be surprised if we don’t hand him round for cuddles, particularly when we’re in groups. If we don’t offer Hugo cuddles, there’s probably a reason – so please don’t ask.
  • Please do not expose Hugo to smoke. Actually, this has always been one of our rules. We will not take him anywhere smoke-affected, and ask for you not to bring it to him.

The coming months and years are going to be tricky, but as things go on they will get easier. As Hugo slowly gets stronger, and his bloods start to stabilise, we will be able to slowly relax the rules. After all, he does need to go to school and work eventually – we can’t keep him wrapped up in cotton wool forever! But this process will take time. We are asking our friends and family to be patient and back us in this process.

One thing we don’t want is for people to feel like we have to be avoided. We would much rather you make plans and have to cancel them than avoid making plans to see us altogether.

The other thing we’ve discussed is the immediate few days after coming home. Although I’ve desperately missed everyone back home, we haven’t lived together as a family for nine weeks now. When we do get back home, we will want – and need – some time to adjust to Hugo’s new routine, his new meds and his new challenge, as well as just simply enjoying having him home and watching him flourish and start to catch up with his milestones (he’s already starting to sit unaided now). Just spend some much-needed time together as a family. Husband, wife and son. And jumparoo, of course! So for the first few days, we will not be seeing anyone – that means ANYONE. We won’t even answer the door. Once we’re bored of each other’s company, we’ll start to arrange to see people.

I hope everyone can understand and support us while we are in the transition period of being back home. It’s going to be hard enough, when the time comes, to be away from the safety net of the ward. Ultimately, the single goal we have – and we feel you share – is for Hugo to have a long, healthy and happy life. The last thing we want is to be under pressure to do things with Hugo that we’re not yet comfortable with. Please, give us time. We will get there. And, to be honest – if you don’t get it, tough. This is one area in which we are not prepared to compromise. But I know that those who are close to us will really get it and support us. So thank you, in advance, for that.

Third time lucky!

On Friday 5th June 2015, exactly 14 weeks after we were told that he needed a transplant and after two failed attempts, it finally happened.

HUGO GOT A NEW LIVER!!!

Yayyyyyy!!

A quick warning before I start – there are pictures of the livers further down. Read on at your own risk!

Hugo’s been stable over the last fortnight – which is why I haven’t blogged in a while; there wasn’t a huge amount to say. He’s been a very active and playful boy, and needed very little clinical intervention from the doctors; we were pretty much just lodging on the ward for the last week. However, as we’d had this date in mind for transplant since the first cancellation in May, and given the difficulties we’d had getting him into surgery, the team has remained incredibly focussed on getting him ready for his op. Everyone was determined that this would be the date – Hugo needed it to be done – and so they really did do everything possible to make sure it happened, including keeping him in isolation when he had cleared the adeno (although I think this was as much to do with my nagging about it as anything else – anything to shut up the anxious mother!) Despite him being in the best possible condition as the week progressed, Ross and I were still very nervous that we would get stuck at the intubation stage again, and had several chats with the team about whether they would take Hugo down first; we were scared that we would have the same situation when they were halfway through Ross’s surgery, and that we might lose Ross’s liver as a result. But on Thursday we were told – firmly – that this was not the way they did things, and they weren’t going to change their protocol. They were totally confident – and, we realised that if they weren’t totally confident, they probably shouldn’t be taking him down in the first place. We had to trust them.

Ross and I took time out to spend a nice evening together on the Thursday – we went to a local pub for dinner, and then just chilled out together until Ross was admitted onto his ward for the night. I wasn’t expecting either of us to get any sleep, but somehow we both managed to get some. I got up with Hugo at about 5am, and Ross came up at 7am in his surgical gown to have some cuddles before he went down. Mainly with Hugo, of course, but I managed to steal some. My sister had come up the night before and stayed at Ron Macs, so when Fiona (Ross’s lovely coordinator) and the Blues (as she called them) came to get Ross just after 8am, I left her with Hugo and went down with him, and I stayed with him until they kicked me out so they could get him under. It was scary leaving him, knowing that the surgery was happening – they had the first one of my boys.

Hugo, despite being hungry from being nil by mouth, was in a pretty playful mood when I got back up to him, so the time from then passed quite quickly. Fiona turned up at our room at 10am – I thought it was his turn to go down. But she’d come to tell us there was a delay because of another emergency that had happened. As frustrating as it was, there wasn’t anything I could do. Emily (my sister) later said how surprised she was that I hadn’t flown off the handle. But I knew there wasn’t any point, and I didn’t want to make myself any more stressed than was necessary. And as it turned out, Fiona was back up half an hour later, this time with Justine (Hugo’s lovely coordinator) and the Blues in tow, coming to collect my boy.

Even though I’ve done the walk down to the theatre before, this time it felt different. I knew it was really happening. I was so scared, but I was also relieved, as I knew that meant that Ross’s surgery must have been going to plan. After I handed Hugo over, I couldn’t feel my legs. Shock kicked in; all this time, we’ve been trying to get to this point, and now it was happening. I still didn’t believe it until I heard (quite quickly) that Hugo had been safely intubated! But it was real. Now I just had the wait.

The time actually passed quicker than I thought it would as the day progressed. Emily arranged for her boyfriend to bring my niece Violet up for the day, and she provided the perfect distraction. She didn’t know what was going on, and although I was incredibly grateful to the support I had (as well as my sister and Chris, Ross’s mum came up with a friend, and we had a huge amount of support from our friends and family at home and at the hospital for which I am incredibly grateful – although unfortunately my mum had a cold so I couldn’t let her come, which was really tough), Violet just lightened the mood, running round the garden at Ron Macs, waving at planes and playing on the swings. It’s very likely I would have been sat in silence just watching my phone, worrying and obsessing over what was or wasn’t happening if it wasn’t for her.

At about midday, I heard that Ross’s liver was out, and they were going to start closing him up. The news was that his liver was PERFECT. Hugo’s extraction, however, was taking much longer than anticipated, as he had lots of adhesions to his bowel. In the end, they had to remove a sizeable chunk (about 7cm) of his bowel and reconstruct it – it must have been pretty severe. But they got the liver out, and Ross’s went in. The plumbing-in of the arteries, veins and roux loop (the new bile flow system formed in the Kasai back in December) then went smoother than expected. By the time I was able to see Ross was in intensive care, late afternoon, I was given the news that Hugo was about to be sewn up!!

When I got to Ross in intensive care, I found out that the epidural that was meant to be providing his pain relief after surgery hadn’t worked, so he woke up from the operation (bearing in mind this is major abdominal surgery) with absolutely no pain relief. It took them a while (far too long, in my view) to get him sorted and comfortable; he ended up on a morphine pump, which he definitely made the most of (FYI, morphine-drunk Ross is HILARIOUS). But given the trauma that he went through, and the fact he had no pain relief at all to start with, he did AMAZINGLY. When I told him that Hugo had his liver, and that he was well and he just smiled. You could see the relief on his face. I think he’d have taken any amount of pain to hear that news.

Back on the ward - the morphine-drunk hubby. No. 1 dad!
Back on the ward – the morphine-drunk hubby. No. 1 dad!

When I saw the surgeon, Hector, he talked me through the operation. After I’d given him a huge hug, of course. All in all, they were very happy with how it had gone. He said, again, how good Ross’s liver was – if they could have designed the perfect liver for Hugo, that would have been it. It just goes to show how things are meant to be – if he’d had the cadaveric liver a fortnight previous, they wouldn’t have been able to close him up. But they managed to close him with Ross’s – muscle and skin. He was also happy with how the ‘plumbing’ had gone – the blood seemed to be flowing well, and it had showed early signs of functioning. The liver was good.

Hugo’s liver, on the other hand, had been in a terrible state. It was, essentially, a dead organ. Black, green, bilious and rock hard. Like a piece of evil that was squatting inside my son. Hector told Ross that it’s up there with the worst he’s seen in a baby that age. How Hugo lasted as long as he did, and how he found the strength to be as alert, as active, and as happy as he was, just astounds me. I knew he was doing well, but to see the real, stark truth of what was happening inside him was a real punch to the stomach. I think it’s safe to say that he couldn’t have lasted much longer without his transplant – and this was really why we were kept in hospital. So they didn’t let him die. It was incredibly upsetting, yet at the same time it just made me even prouder of him (if that was even possible) that he just carried on regardless. I knew he was very, very poorly, but as strange as it sounds, I never really saw it in him, as he never acted poorly. He had a resolute will to live. I am so in awe of my baby boy.

Because of the adhesions, and the severity of the diseased liver, Hugo is at a higher risk of complications post-transplant. His bowel walls are thin and damaged, so he may suffer a perforation. And his portal vein is at risk of blockage as it is very narrow, caused by the portal hypertension (his body had formed shunts to deliver blood to the liver, after which the veins can become narrow and collapse). If he does suffer a perforation or blockage, he will require more surgery. Suffice to say, they are keeping a very, very close eye on these things. And even though I hate the thought of him going in again, I don’t feel as scared, as I know he doesn’t have that thing inside him any more. I feel like we can conquer his obstacles now.

I finally got a call from Fiona at 7.30pm to tell me that Hugo was closed and up in PICU. When I got that phone call, the relief finally flooded out of me. Whereas that morning, I’d felt full of lead when both of my boys were in, I suddenly felt the weight lift. It was done. They were both safely out of surgery, and in intensive care. After 98 days of waiting, it was finally done. Hugo had a new liver; he no longer has Biliary Atresia. Even though we know the next stage won’t be easy, we are finally on the other side of that hurdle; one where we can believe our little boy will get better and start to have the life he so truly deserves. We can finally start to look forward.

We’re now at the end of day 5 post-transplant, and they’re both doing well. I’m trying my best to split my time between the two of them; it’s not easy, as I want to look after both of them as much as I can. But the exhaustion is so worth it as I see them both get better. Ross is still fragile, and he’s getting tired very quickly. But his scar is looking great and he’s getting stronger by the day. He’s now getting out of bed and has made it up to see Hugo a couple of times, and they’re now talking about his date for discharge. Unfortunately, he’s getting totally crap care on his ward. It’s surprising, as King’s is such a good hospital, but his nurses genuinely don’t seem to care that he’s had major surgery; on day 2 they removed his cannulas and told him to take paracetamol tablets instead of having IV. I mean, really?! Thankfully, Fiona has been kicking butt for us, and they’ve been bending their strict visiting hours for me so I can get in and help him out a bit, but it’s added to the stress of it all unnecessarily.

And Hugo… well, at the moment (touch wood and everything), Hugo looks just incredible. He’s had some ups and downs already – all par for the course – which made the weekend quite difficult. But he’s overcoming the challenges, hour by hour and day by day, and taking the small steps that we need him to take. His colour is already so improved – his bilirubin (the part of the blood that turns him yellow) is now at about 60, so he looks much less jaundiced. It should be under 10, but it went up to about 450 at it’s highest. His belly looks amazing – his ascites has totally gone (you’d hope so after they took over a litre of fluid away from his belly on Friday!) But that’s not the important thing. The important thing is that the liver is currently working! The liver function tests are all returning to normal ranges, so far. The graft seems to be working. It’s VERY early days, of course. We’ve been told to expect a bout of rejection – it’s quite normal. And although he’s off the breathing support, out of PICU and back on Rays, he’s still at risk of a range of complications. He’s not yet feeding orally, but he’s tolerating milk well and everyone seems confident it won’t be long until that picks up. We’re not out of the woods yet. We’re taking each day as it comes. And so far, so good.

I still can’t find the words to describe how I feel about what Ross did on Friday. I choke up when I think about it. Lots of people have called him a hero – including me – but it doesn’t really do it justice. Neither does proud, even though I am – VERY proud. I’m actually totally in awe of him. Ross is my best friend, he is a wonderful husband and an amazing father. But he’s done something in the last week that has touched my heart in a new way. He saved my baby’s life. He kept saying that it’s what anyone would do in this situation – that may well be true, but he actually did it. He gave Hugo another chance. What do you say to the man who does that? Thank you, I guess!

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Day 5 – I have a HERO and his name is DADDY – my boys, my world, back together

Third time really was lucky for us.

“I never liked roller coasters anyway…”

This week was turning out to be the best one we’ve had since we’ve been up at King’s. The sun’s been out, Hugo’s not only been a blast to be around but clinically, he’s been in the best condition since the Hickman line mishap, having appeared to have quickly kicked the adenovirus out of his system, and I had a trip home planned for some serious R&R (and a few bubbles, of course).

The week didn’t start brilliantly – it was Ross’s birthday on Monday, his first one as a daddy, and he didn’t get to see Hugo. Ross and I both stayed at Ron Mac’s on Sunday night, so I saw him briefly in the morning, but he had to leave really early to get to college – where, it turned out, there was a surprise mock exam awaiting him. We both felt a bit sad about how his birthday had turned out.

Hugo's first piece of art for his daddy's birthday. He's a clever one!
Hugo’s first piece of art for his daddy’s birthday. He’s a clever one!

Hugo, however, had other ideas. He kick-started our fifth week in hospital with some serious leaps forward in his mood and development. In spite of the discomfort he’s in from teething, his smiles have been bigger and better than ever this week. And they haven’t just been reserved for Ross, my mum or me. He’s charming the pants off of everyone who comes in to see him. He’s stepped his cheekiness up a notch, too, with lots of chatting and bubble blowing, learning to blow raspberries (although he’s still not quite there with the high fives – YET), and cuddling Mickey in the most inappropriate way. It’s so nice to have a lively, chirpy little man back in the room. It really gives me the strength to keep going and, more importantly, keep things as normal as they can be for Hugo up here.

It must help that we’ve been able to take him out almost every day. Obviously, if he requires anything clinical – albumin or antivirals, both of which take a few hours – we’re still confined to his room. But these requirements are becoming less frequent. So on the days where he is well enough, and the sun is shining, we’ve taken him out. Normally, we go for a wander around Ruskin Park to see the squirrels and ducks, and then head up Denmark Hill to get some supplies and to Café Pronto for lunch (I’d recommend it to anyone who comes to Camberwell and needs a decent lunch) before heading back to hospital. He is always so well behaved when we take him out – he must appreciate the change of scenery as much as we do. Having the freedom to do all of this is a real relief for all of us; it really puts a smile on all of our faces.

One of the major steps forward we’ve taken is with his feeding. Hugo’s still on the continuous milk feed, and we’ve been very cautious with increasing it for fear of him being sick, which is both counter-productive and unnecessarily distressing. So I’ve been really focusing on his solids. And on Wednesday we had the breakthrough we’ve been waiting for – we managed to give him three meals! He’s been happily eating breakfast for a couple of weeks now (and we’ve branched out from rice pudding too – he’s also wolfing down blueberry and pear baby brekkies and banana flavoured rice), but come lunch time or dinner time he would scream the place down when approached with anything. But something clicked on Wednesday. When I gave him his lunch of orchard chicken, followed by a chocolate biscuit and custard, his reaction was amazing. He was actually excited to be eating! I decided to try for a third meal, albeit a snackier one – a Laughing Cow soft cheese triangle, some yoghurt and a banana – and the same thing happened. In fact, I’d go as far as to say he LOVED it. Not only that, but as his arm fat dropped this week (his only true measurement at the moment) we decided we needed to be braver with his milk feeds and push them up to his target 30mls an hour. And he tolerated it. We’d finally cracked it and were able to get the calories he needs into him! I was so bloody proud of him, I treated the staff and other residents to a little dance up and down the ward!

This week was also my opportunity to get home for a couple of nights, recharge my batteries and let my hair down. I’d pretty much planned my time, filling Friday up with eating lots of imaginary chocolate with my niece Violet, seeing friends for some drinks and getting a bit of pampering in, too. Perfect, really (other than my boys being up in London and not at home with me, obviously). Ross came up from work on Wednesday, and on Thursday we had a brilliant family day – sun shining, ducks following us round the park (slightly scary!), lunch out. Hugo barely slept but was really happy nonetheless. We took him with us for an early dinner before I hopped in the car to drive home, and he was loving being in the pub playing with his toys. And then it happened.

We got The Call.

Actually, we got The Call seven times – our phones were on silent! Poor Gill (transplant coordinator) and Melissa (our lovely nurse for the day) had been desperately trying to catch us before I left for home. But we eventually picked up – a B+ liver was on its way to King’s, and Hugo might be the one to have it.

Hearing that news was like boarding the biggest and scariest roller coaster we’ve ever been on. Neither of us could finish dinner. We stopped Hugo’s feed and sped back to the ward. When we got back, we were told that the liver was definitely intended for Hugo, and that everyone was happy that Hugo was well enough to go through the operation; all that was left was for Hector, the surgeon, to eyeball the liver when it arrived at King’s and make sure he was happy with it.

Things from then became very surreal, and went by in such a blur that it didn’t really feel like it was happening to us; time went both quickly and in slow motion. We asked for Hugo to be given an examination and X-ray, as it didn’t seem like they were planning on doing one routinely – Hugo had only been checked over by Emer, the consultant, two hours prior, and she was happy with his condition. However, we were conscious that we’d already had one surgery cancelled because he had adenovirus, so we wanted him checked over. Another doctor came and gave him the once over, and he had his X-ray. Everything was fine. We had to pack up our room, as we’d be discharged from Rays when he was taken down. We met the anesthetist, and the surgeon came up to go through the risks and get our consent. We were told that, if it was going ahead, it would happen very quickly – and they weren’t wrong. Hector came up at about 9.40pm and said that the liver was beautiful, albeit a bit bigger than they wanted him to have, but because of his ascites they were completely happy to go ahead. And then about two minutes later, our room was full of nurses, anesthetists, and the on call transplant coordinator Matilda, and we were on our way down with Hugo. Whirlwind doesn’t do it justice. At this point, he’d had about three hours sleep since waking up at 6am that morning and yet, rather than being overtired and grizzly, he was still giving us the biggest smiles and blowing raspberries at the team.

Fitting in a cuddle with Mickey before going down to theatre. And yes, Mickey has a name badge on...
Fitting in a cuddle with Mickey before going down to theatre. And yes, Mickey has a name band on…

We took the call from Gill at 6.30pm, and at 10.10pm Hugo was officially in surgery.

After calling our parents and sisters to tell them, and putting our stuff in the store on the ward, we headed back to our room at Ron Mac’s to get our head around what was happening; the next time we’d see Hugo, he’d have had his liver! We’d told ourselves that until he was taken down, we wouldn’t believe it was happening. But it was happening. In a few hours, we’d be on the other side of the hurdle we’d been heading towards for three months – it was so exciting and nerve wracking at the same time. Matilda told us she would call after the first three hours, and then every couple of hours after that until he was out. The operation was expected to take anything from six to ten hours, so we’d see him in PICU the following morning. We were told to try and get some sleep – hah!

But. And I’ve said this before. There is ALWAYS a ‘but’ with Hugo. My phone rang at midnight, less than two hours in. It was Matilda. She told us not to worry, but asked for us to come to PICU to see Hector. Those of you who know me well, know I don’t run. But I learned how to run at that moment. I ran so fast that Ross couldn’t even keep up. We both knew in that moment that it hadn’t happened, but we didn’t know why, and the fear I felt in those ten minutes are the most gut wrenching I’ve ever felt in my life.

When we finally got there and saw Hector and the anesthetist, they explained to us that when they’d put Hugo under and ventilated him, his saturation (lung function) had dropped significantly. They found the bottom of his lungs were full of secretions, probably from the adeno, which had been compressed and hidden by the ascites restricting his lung capacity. When they had fully inflated his lungs, it came loose, and became a problem. They had decided that they couldn’t continue with the transplant.

As awful as it was to crash that hard, Hector explained that if they had gone ahead, the potential complications that Hugo may have suffered could well have been so severe, they may have killed him. We knew, even through the shock, that they had made the right call. These guys are the best in the world at what they do, and there is a reason for that; they make the right calls when the chips are down.

The next day in PICU
The next day in PICU

Hugo was kept sedated and on the ventilator overnight, and we spent the day in PICU with him on Friday. PICU is a weird place; I don’t think it can really be explained. Hugo coped with it characteristically well. They suctioned a lot of secretions from his lungs over the day, and at 2pm they took him off the ventilator. When we saw him after that, he was pretty much back to normal, kicking around and ravenously hungry. At 6pm, the nurses came from Rays to take us back to the ward – less than 24 hours after we got the call – and I decided I wanted to try and feed him a bottle, rather than just start the NG up. Bearing in mind that he hasn’t taken a bottle in weeks, he went to town on it! After the massive highs and lows of the day leading up to that, he gave me what I needed. He gave me a boost, he let me cuddle and feed him, and he gave us a glimmer of hope that when the time does come, we’ll be able to feed him orally and not need the tube. He’s back on the NG feed now, but still… It felt amazing.

It probably goes without saying that Ross and I have been left reeling a bit from this ride. I mean, how close can you actually get to it happening without it being taken away?! All of the doctors and nurses we saw on Friday were totally gutted for us and shell-shocked – many of them are so invested in his care and well being, and know him (and us) so well after five weeks here, that they really felt the blow. Everyone we’ve spoken to has said this hasn’t happened before – they’ve never had a child get as far as going into the theatre, only to be wheeled straight back out. Thankfully, they hadn’t started to split the liver when they found this problem, and the whole piece went to an adult in need of it. It wasn’t wasted. The family that had lost a loved one that day will still have the precious knowledge that a life has been saved. That has been a massive comfort to me.

The next big question in our minds is how to get Hugo over this before the next date for Ross to be the donor. It doesn’t even bear thinking about what would have happened had this not been discovered during his surgery – we would have lost Ross’s liver as an option. This is where we can believe that, although it was a rough ride, it happened for a reason. It happened so that we can do everything in our power to get Hugo’s lungs clear for the next date. We’ve been very explicit to the team in our concerns about this, and that even though we fully trust the judgment of the consultants and surgeons, we now need to trust that Hugo is ready for the surgery to happen. It’s not going to be easy.

Now, back on the ward, we’re not in a much different place than we would have been had this not happened at all. Obviously, we are totally gutted to have lost a high quality B+ liver. But we still have Ross as an option. Hugo is still feeling the effects of the anesthetic and tube a bit, so even though he’s still given us smiles today he’s also rather grizzly and much sleepier than normal. I didn’t get my break at home, but that can wait. We still have a date for the transplant to happen. And we know more about his condition than we would have done had this not happened.

Back on Rays and waking up smiley again
Back on Rays and waking up smiley again

My sister put it right when she said that if someone could try to devise a way to torture us, they couldn’t get much closer than this. We’ve felt more emotions in 24 hours than we thought possible – shock that a liver had actually come up, and fear about Hugo going in for surgery. We finally allowed ourselves to be excited about the prospect of getting Hugo on the road to recovery, to then have the rug pulled from underneath us again just two hours later. Ross’s head has been in a spin from being geared up to be the donor, to accepting it couldn’t be him, for it then to change again. We’ve had adrenaline, numbness, and total and utter exhaustion. And the whole thing has been so surreal that it could actually not have happened at all.

I think it’s fair to say that this particular roller coaster has been totally horrendous. As Ross said – “I never liked roller coasters anyway”; this is one we desperately want to stop.