A transplant date – or so we thought

This should have been the update we’ve been gearing up to since February, the one where we could tell everyone that Hugo’d had his transplant. But we seem to be living in a world of big fat ‘shoulds’.

It wasn’t long after my last post, where were given the green light for Ross to be the donor, that we were given a date for the transplant to take place. The date was set for Tuesday 12th May; we were given a week’s notice. The week then kind of slipped away from both of us. Even though there wasn’t really anything to prepare, as such – we’re already up at hospital with everything we need – there was still a kind of pressure on the days leading up to the transplant. I was making plans for company and support for the day of the operations, while Ross tied things off at work for a couple of months and started to ready himself for the surgery.

Reading his OT notes on how to be less wonky-headed!

But – I’m starting to feel like I’m a bit of a broken record here – things never seem to be that straightforward with Hugo. Towards the end of the week, I noticed Hugo started to sound a bit congested. I started to worry, despite Ross trying to reassure me. I mean, Hugo’s luck had finally started to turn and things were happening… right?

Well, no. The nurses also noticed, and did some swabs to check for viruses. And, of course, they came back positive. Hugo had picked up the adenovirus, which is just a common cold, but is enough to put a hold on the transplant. We knew that any bug could risk the surgery going ahead; the risks associated with suppressing his immune system while he’s poorly is significant, and there is also a risk that he could need to stay in intensive care for longer, possibly be intubated and on the ventilator longer, and develop other complications such as pneumonia. In short, putting him through a transplant while he’s poorly could kill him.

So even though he had barely any symptoms, on Monday he was deemed poorly enough to postpone the op. To say we were gutted is an understatement, but we both totally agreed with the decision (especially when he spiked a temperature on Monday night). The fact that one of the lead consultants told us that he wouldn’t agree to his child going for the surgery cemented the seriousness of it in my mind; we hear so much clinical speak on a daily basis, to hear the human perspective from a senior medical professional took me by surprise.

Hugo’s old man face (he really was enjoying playing with his toy and balloon!)

Even though we agreed with the decision, we had hoped that it was going to be a matter of days until he could go again. But the new date we’ve been given is a long way off (Ross and I have bickered back and forth about whether to tell people the date at all, and have settled on a ‘not yet’ approach – it’s too early to tempt fate on the new date yet. So for those who were going to ask – don’t). This is where I’ve got really angry – not an emotion I’ve felt much of during our ups and downs so far. But the length of time we have to wait now to get Hugo better made me angry. And it won’t come as a shock to those who know me well that I’ve let people know that!

One of the reasons for the delay is the lead surgeon is on a sponsored bike ride to Barcelona for the next two weeks. Ok, granted, he’s raising money for the liver unit here at King’s. It’s not like he’s off on a jolly somewhere. It’s a good cause. And yes, there are several other factors which all contribute to the next available surgical slot falling into next month; all I keep hearing is ‘logistics’ – I used to love logistics. Now I bloody hate them! But the fact that Hugo’s operation, recovery and – ultimately – bringing him home and getting our lives back is delayed by weeks because of a bike ride and logistics made me mad. I mean, REALLY?! Even though he’s actually quite stable at the moment – he’s not needed a tap now for 12 days, although he’s having more regular albumin to try and keep the ascites under control – he is still deemed in urgent clinical need of a liver transplant. It’s just too bitter a pill to swallow for me; it just doesn’t make sense.

We’ve now found out, though, that the adenovirus is in his blood (we were hoping it was just respiratory), which means that it is unlikely he would be deemed clinically well enough for the transplant for another week, at least. So we’ve now managed to find a way to accept that this is just the way it’s meant to be. Yes, it’s going to be shit being in hospital for another few weeks, but it’s something that we’ll manage because we have no other choice.

Totally unphased by this weeks set-back – Hugo in a playful mood

So, the silver linings. We always manage to find them! Because Hugo has a respiratory virus, we’ve been moved out of the nursery into a room, so we’ve got privacy and some peace and quiet! Which has made a huge difference to my sanity, if nothing else. I’ve been telling pretty much everyone I see that I’m not taking Hugo back into the nursery now before his op – I just can’t risk him catching something else and having another date cancelled. Everyone is very sympathetic to the situation, and they’re all being incredibly supportive, so I do believe this will be kept in mind with the ward logistics (gahh) as the weeks go on.

We’ve had amazing support from our families, as ever. My mum has been here every week with me, and this one was no different. My sister also came to stay for a night, which was really nice as I’ve missed her so much. Ross had to go back to work, which was difficult for both of us, but is here as much as he can be as always. And he’s taking a couple of days off so I can get home for a night or two and not miss seeing him over the weekend – I’ve been feeling increasingly homesick, and need a break from living in hospital to see my friends and be in my flat. But he gives me the strength to keep going up here and I wouldn’t be able to sacrifice my one night with my husband to do that.

Enjoying the sunshine on an outing to the park

As for Hugo, since becoming ‘poorly’ he’s actually been in a better mood than for the last few weeks, and he seems to be making strides in his play and development. We were given a set of velcro supports from the Occupational Therapist which has done wonders for his head shape; the illness has rendered him a little flat-headed on his right side because he’s not able to roll (although he now sleeps on his side – still with Mickey on his face, of course!) and has to spend so much time in his hospital bed. We’ve a little way to go, but he’s definitely less wonky! He’s taken the step from just putting things in his face to putting them in his mouth – spoons, toys, and chocolate biccies. He’s almost sitting up on his own – again, his belly is a hinderance, but he seems totally unphased by it. He’s learning new ways to play and reaching out for toys (or our faces) all the time. He’s almost laughing – his face and his eyes are already there, we’re just waiting for the noise now. We’ve been taking him out every day for a walk around the park (weather and treatment permitting, obvs), and he’s starting to notice and enjoy the new experiences – squirrels, flowers, and the wind in his face. And I’ve nearly taught him to high-five – I’m determined to achieve this before his transplant… I’ve got to have my goals, after all!

Mumma and bubba playtime

I’m just so bloody proud of how much he is learning in this environment. And again, I might be like a broken record here, but he makes it so easy to cope. He makes both of us feel very lucky, and to achieve that in the midst of this situation is quite something!


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