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
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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 37–47: new blood

I reckon some people won’t believe the U-turn we took after my last post. I almost feel a bit reluctant to write about the good side of life at the moment, in case I’m jinxing it. But then, I guess, if I were to follow that line of superstition I’d have driven myself so mad I’d have been sectioned by now.

We lasted about four hours after the last blog was posted before we were on our way back to QEQM with Hugo. Yes, I know. You can’t make this shit up. Thankfully, this time we had only short, if a bit too frequent, stays in hospital. And even more thankfully, something totally random allowed us to catch a brewing blip extra early.

On the Saturday, Hugo wasn’t quite himself – not quite so happy, a bit more lethargic, a bit whinier than usual. But it was a scorching hot day, so you could forgive him. And anyway, we’re all allowed an off day every so often. But we started to worry as every time we picked him up, he screamed in pain. We had Ross’s sister, Amy, over to spend some proper quality time with Hugo (and to have some bubbly with me), and as we were giving him his wash (normally his happiest and most excitable time of day), he was inconsolable. Crying to the point of exhaustion. We examined his underarms, and noticed that he was slightly red and swollen on his right side – the side where his Hickman line is. A quick phone call to Rays later, and we were on our way over to Rainbow.

in hospital
Back in hospital. Sigh.

Without wanting to sound all self-pitying about it (that’s not my style), I really did feel a bit fed up at that moment that every time I’ve tried to plan something for me, it doesn’t happen because we end up in hospital. Ross tells me that it will get better, that I will get my life back, but it can feel pretty bleak at times. I guess it’s all part of this journey, and I know that Ross is right, really (don’t tell him, though!) My mum told me to try and think longer term, essentially backing up what Ross had said; things WILL get easier, we WILL get our lives back. It’s just a case of WHEN. We’re still only just out of the eye of the storm, so we can’t expect it to happen just yet. And even though I know that, it can still be pretty deflating to keep losing my grip on having a life and to go back to hospital life.

We ended up only being at hospital for about 3 hours that night. Hugo perked up loads on the way over, and the redness and swelling had faded by the time we got there. Typical of Hugo, really. They gave him a thorough check over, x-rayed to check the line was in the right place, checked it was flushing and working properly, and took some routine bloods and line cultures (the immediate worry with anything unusual at the moment is a line infection). Everything seemed fine – his liver function tests had all come back ok, there was just the full blood count to come back, so we went back off home. The doctors said they would ring if anything was amiss.

And of course, at 8am the following morning, the phone rang. Hugo’s CRP (infection markers) was high. It should be below 10, but his was 116. They wanted him back ASAP for further bloods, observations and probably to start him on IV antibiotics, even though he had no signs of an infection – usually he has a temperature, but this time there was nothing. King’s wanted him started on antibiotics on Sunday after the CRP was even higher at 166, so we settled in to the room expecting to be there for a week. On the Monday, his CRP had come back down to 116, and the nurse told us that the antibiotics were just once a day, so we could actually take him home and have him treated there! He had a total of five days of antibiotics, and by the Thursday his CRP was down to 30 so King’s were happy that they had done their job. We had managed to nip it in the bud again, even though we didn’t suspect an infection when we took him to hospital; all the while these markers were raised, he still didn’t show any signs of infection – no temperatures, he wasn’t off his food (he even enjoyed his first hospital meal on the Monday, and we all know how rank they are), no cough, no cold. It was weird – where was the infection?!

Unfortunately, it turned out that the infection (we never discovered where it was, by the way) wasn’t the only thing we had to contend with last week. About two hours after we got Hugo home on the Monday, QEQM rang to say that his haemoglobin (HB) was really low, and that he needed an urgent overnight blood transfusion. Obviously, this was a really scary thing to be told. I took Hugo back over, and he had repeat bloods in the early evening. The sample eventually came back and it wasn’t as low as they had thought (it was 68 instead of 55; they want it about 70); the earlier bloods must have been contaminated, or diluted. They thought he would probably need a transfusion, but it wouldn’t happen overnight. So, again, I packed him off back home.

We eventually heard quite late on the Tuesday that King’s did want Hugo to have a transfusion the following day, as his HB had dropped to 66. By the time we’d been told this, the community nurse had been out to take more bloods, and shortly after speaking to QEQM they were back to take YET MORE bloods for the cross match. Now, I don’t know if it’s just me, but this seems totally stupid. Hugo had bloods taken on Saturday, Sunday, twice on Monday and twice on Tuesday. I mean, REALLY? No wonder his HB was dropping – they weren’t leaving him with anything!

Hugo had his blood transfusion on the Wednesday. It took about 3 hours, so we were there and back within a day. And he responded amazingly. His bilirubin had come back as normal on the Tuesday, which is excellent, but the community nurse thought he still looked a bit sallow, a bit pale. As soon as he’d been pumped full of fresh B+ blood he turned the most perfect, gorgeous colour. Pale pink, with rosy cheeks. We finally, for the first time in his life, know what colour our baby should be. We now have a benchmark for him. And not only did he look amazing, he became so much happier and full of energy. I know, I keep saying this is improving. But it really, really is.

Happily, the transfusion has boosted him so much that we haven’t needed to take him back in. So even though we’ve had a blip, since his discharge from King’s on July 1st, the time we’ve spent at home is currently outweighing the time spent in hospital. Hugo’s cheeky character is really starting to shine through now, and he’s doing new things all the time. He pulls funny faces at us. He is almost rolling, and is figuring out how to move to get what he wants. He dives upside down and chuckles with so much glee that I cry with laughter. He comes out on trips to town, for lunch or just a mooch, and is (almost) always as good as gold. He even let us both go out for Ross’s cousins 30th birthday; Ross’s dad and step-mum came to babysit, and instead of us ending up in hospital, we actually made it out. Ross had to take it very easy, of course, whereas I allowed myself to get a bit glammed up and let my hair down for the first time in months. It felt good… Ok I didn’t feel quite so good the next day! But I was buzzing from just getting out and seeing all the family, from having some normality, so it was worth the hangover.

After his transfusion, we saw a blood transfusion practitioner, and she spoke to us all about blood. The whole blood donation process is incredible – another amazing part of our NHS and what it does. There are so many things that you don’t even consider when you’re being treated by our medical system, that you take for granted. She told us that blood bags are measured into two sizes: neonatal, and adult. Nothing for paediatrics, nothing for those between three months and 18 years – not in our area, anyway. So although Hugo only needed 100ml of blood, his bag was the standard adult size of 300ml. The other 200ml has to go to waste. I very naively thought that the blood was stored in some kind of barrel, and they siphoned off what they needed. Donated blood also only lasts for 35 days. That feels like a really, really short period of time. It feels like there was potentially so much being wasted, which just makes the whole donation system even more valuable.

As soon as we got home from Hugo’s transfusion, we signed up to donate blood. I’ve never done it before as I’m rather squeamish – I hate even having blood tests. But I’ve kind of had to put all of that to one side while being in hospital with Hugo. And anyway, even if I didn’t feel a bit better about the actual process, the fact that Hugo has had so many blood products, and a few transfusions, it’s a no brainer to both Ross and me now. We then found out that there was a blood drive in Deal the following Monday, which happened to be our second wedding anniversary. We thought it was the ideal way to spend the day; to give a bit back to a system that has saved our boy countless times. Unfortunately, we weren’t able to get down there, but we’ve got the next date in our diaries and we’re both really excited about starting our donations.

If my blog can achieve anything, it’s to encourage people to buy into the amazing NHS that we have. To help raise awareness, to get people to sign up to the organ donor register, and to give blood. So many people being treated in our hospitals rely on the generosity of others, and sometimes it takes it being so close to home to really highlight the importance of it. Of course, I now wish I’d donated blood for the last twelve years. But I haven’t. And I’m not going to waste my energy regretting that. Rather, I’m going to do something – I’m going to give blood. I know Hugo would give a huge high five to anyone else doing the same.

“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.

Hugo the Brave

So much has happened in the last fortnight, it’s hard to know where to begin.

Up until last Sunday, we’d had a pretty enjoyable couple of weeks. To start with, we managed to last 15 days without Hugo having any bloods taken!! We still had two trips over to QEQM to have a new NG tube (he’s now learning how to pull it out, the little rascal), but I’m not classing those as actual, real hospital trips. So we’ve been able to make the most of the sunny days with lots of walks along the seafront, and have had the chance to catch up with some friends and family without having our plans cancelled. We even made it out to go and watch my brother-in-law’s band (the Blue Moons – if you’re local to Deal, go and watch them. They’re excellent) playing at a pub round the corner. It’s been the most blissful time since Hugo was diagnosed in November, and a little glimmer of what life will be like when we’re on the other side of this and he’s better. Ross also found out he passed the exam he sat in January – I’m so proud of him, given everything that we’ve been through during his studies! So we’ve had some pretty happy times, which has been lovely.

We’ve had a couple of trips to London with Hugo. The first, which was now ten days ago, was for the next stage of Ross’s living donor assessment, and for Hugo to be reviewed while we were at King’s (making the most of being up there). Having three of us, Hugo’s buggy, feeding equipment (we’re now using a pump, which comes with a LOT of extra crap) and overnight bags for all of us packed into my little Picanto to tear up the motorway was not the preferred way of spending the hottest day of the year so far. But we made it up in time to enjoy the last of the afternoon sun with a walk up to the pub on Denmark Hill for dinner from the Ronald McDonald house where we stay when we’re up here. The RM house is an amazing place – we don’t know where we’d have been without it. The charity is so worthwhile – providing rooms (a “home from home”) for families with children at King’s to stay, without the monstrous costs. There is a £20 deposit for your key, which you can – and we do – donate. That’s it. And it’s such a well-equipped place – the rooms are all so comfortable, it has a great kitchen, lovely garden, and lots of support. We’re hoping to do some fundraising for the house when Hugo’s had his transplant – £5,000 sponsors a room for three years with a plaque on the door. You can also get a leaf, bird or treehouse plaque with Hugo’s name engraved up on the wall in the house. We want a room, and for Hugo to be up on that wall. So watch this space!

Chilling in a room at Ron Macs – the house that love built

Hugo’s review was pretty straightforward – as we had another planned trip shortly after, they decided not to bother with bloods. We reviewed his meds, made some adjustments, had an ultrasound (the best one he’s had in a while), had another NG tube (I mean, really?!) and that was pretty much it for him. Ross had his ultrasound and x-ray, and – most crucially – his blood results and a meeting with the surgeon, Professor Heaton. 99% of everything so far is looking good – he’s B+, which is a blood match, his liver isn’t fatty, most of his bloods came back perfect. One didn’t, however. And unfortunately, it’s a liver function that’s out of normal range – one of his clotting functions. Basically, his blood clots quicker than normal, which would put him at a higher risk of DVT and pulminary embolism during surgery than most. And also, as it’s a liver function, this is something that Hugo would inherit should the transplant come from Ross. We don’t know yet how much of a blocker this is, but Ross has had to be referred to see the haematologist to determine whether it is possible to continue down this road. They’ve not ruled it out, but there is a chance it will be. We’ve been assured the haem team are enablers, not blockers, so it would only be stopped if there was very good reason. Ross is so invested in doing this – he really wants to be the one to help Hugo, to save his life. I hate that it’s so out of his (and our) hands. We’ve got to wait another week for these appointments, and for the final parts of his assessment (CT scans etc). It may not sound like long, but it’s too long for us.

Hugo charming the nurses – as ever

The thing is, Hugo is starting to get worse. His belly has been looking pretty good over the last couple of weeks (although more on this later), but that’s pretty much where the good ends. He’s not tolerating his feeds very well, and is being sick quite a lot. He’s now starting to scratch. He’s getting rattier and rattier – even cuddles aren’t providing any comfort at the moment, which I’m finding incredibly hard. They think this could be down to high ammonia levels in the blood. Nothing that can be fixed now; the doctors can’t really say much other than “he needs a transplant”. It’s reaching the stage where we’re just watching him get yellower and poorlier, and we’re just hoping that we get a liver soon. We’ve been told he has time – but we don’t have an indefinite amount of time. And that is beyond scary.

Fiona (the living donor co-ordinator) seems reluctant to assess me at the moment, as Hugo is still so young my liver will still be quite fatty. So she suggested at the start of the week that we give out her number to anyone who has volunteered to be a donor, and I believe she’s been kept pretty busy with phone calls from friends and family over the last couple of days. Of course, we’re hoping it doesn’t get that far. But the fact that there are so many people who are willing to be considered, and that have actually called her to put themselves down to be looked at, is the most touching thing. So just a quick and very public message to those of you (and you know who you are) who have put yourselves forward – thank you, so so much. You’ll never know how much it means to me and Ross, and we’ll never be able to find the words to really explain it. But however this pans out, we’ll always be incredibly grateful to you all. And we’ll probably owe you a drink or two when this is all over.

Our home for the week (at least)

Right now, we’re staying on the Rays of Sunshine ward at King’s, as Hugo has had a Hickman line put in. This is basically a semi-permanent line into one of his major blood vessels to allow easy access for taking bloods and giving IV treatments (albumin, fluids etc). We asked for it, as it means NO MORE NEEDLES! We’ve reached breaking point with his veins; he needs bloods too often to keep getting at him the way we are. It would also mean his bloods could be taken at home by the community nurses, which will provide a welcome break from the constant hospital trips (allthough I reckon Hugo will miss the attention from the nurses at QEQM!) Even though it’s scary that he’s had to go through another operation, it’s a relatively straightforward procedure (in comparison to the surgery he’s already had, and the one looming ahead of him, anyway) and it will alleviate some of the constant nastiness of his current care. Or so we thought. After having his slot cancelled on Tuesday, he eventually  had the operation on Wednesday. It took a couple of hours longer than we were told it should (he also had his hernia fixed while in theatre – two birds, one stone, and all that), and when we got him back after four hours we were told his heart rate had increased after the line went in, and they’d had to adjust its position. Ok, a slight complication, but it was dealt with. The next morning the doctors on Rays carried out an x-ray, and it turned out that the line had somehow slipped, and was now far too far into his heart to be left untouched. It could be quite dangerous. As frustrating as it was, it happened and had to be dealt with. So yesterday, he had to go back into theatre to repeat the op. Happily, this time he was out in two hours, and they’ve x-rayed several times to confirm the line is in the right place. Unhappily, it meant he needed more cannulas in the interim, which they struggled to get in and kept falling out, so he’s now covered in prick marks and bruises again. It kind of defeated the whole object of us being here – he shouldn’t need to be pricked anymore. But hopefully, that’s it done now and we can finally offer him that relief.

Sneaking in some sleepy cuddles

 

Our boy was certified brave after operation number two of the week

 

However – and there’s always a however with Hugo at the moment, it seems – because Hugo has been nil by mouth for a total of three days (something he’s not actually been that bothered by – I think he’s enjoyed the break!), he missed some of his meds, including his diuretic which helps with the ascites. Because of that, coupled with a lack of nutrition and the standard effects of having surgery and a general anesthetic, his ascites has boomed again. We’d just managed to get his belly under control – as I said earlier, it’s the best it’s been since January over the last few weeks. But it jumped up in size by about 4cm from Wednesday to Thursday, the veins became very prominent again and it went from being very soft to very, very tight. He was also not peeing. Recognising the signs, I told the doctors that I thought he needed albumin. I know my son, and I know that he is not capable of flushing out the fluid himself. Unfortunately, the doctor didn’t listen to me  (or look at Hugo) and instead just looked at his numbers, which suggested that he didn’t need albumin. A battle to get him some relief from his symptoms is the last thing we need to deal with at the moment, but it’s what I was unexpectedly faced with. Thankfully, I had others to turn to – one of the (lovely!) transplant coordinators, Gill, a senior nurse and the ward matron. When they looked at Hugo, they could instantly recognise that he needed something as he looked clinically more unwell, and swiftly did some arse kicking on my behalf. When the consultant came on ward round, he took one look and said “Hugo needs albumin”, among other things (daily weight and girth measurements, and restricted fluid intake while the ascites remained at large). Twelve hours after I knew he needed it, it finally happened. His tummy hasn’t gone down in size yet (something not helped by the repeat surgery), but we’re on their backs now to keep on top of it and not let it get even worse.

Had the operation been as straightforward as hoped, we’d have been home after 24 hours. But as it stands, it looks like we’ll be here for a few more days. With the complications in general and the increased ascites, Hugo is STILL off feeds (all that hard work and tears put into getting his weight up, gone, as we can’t get any milk into him), so we have to wait to get his fluid balance sorted and his feeding back up to scratch here at hospital before we can go home. This morning, we also had a question mark raised over another blood level that is now out of kilter (his haemoglobin). So I’m resigning myself to at least another two or three nights here. Thankfully, Ross is here at the moment. He hasn’t been able to stay with us much on this trip – if he is the donor, he’ll need about three months off work, and he just doesn’t want to test their kindness and support, which is fair enough! He made it up unexpectedly midweek to give me a night off (I was getting beyond coping point with the sleep deprivation), and he’s here now for the weekend. Hugo loves having his daddy here; we both miss him like crazy when he’s at home without us. But it’s our lives at the moment, and we have such wonderful support that we know that we’ll somehow make it through.

Family time with the fishies