Progress!

This week, we took a big step forward to getting Hugo well again. Ross finished his assessment to be a living donor on Friday, and after a very nervous two week wait following one of his clotting results coming back as out of range, he’s been given the green light to be Hugo’s donor!

Happy parents – sunshine and progress

Even though it’s finished on a high, it’s been a bit of a rocky week. We’re still at King’s with Hugo. And we were told on Tuesday that he’s not well enough, and is unlikely to become well enough, to take him home now before the transplant. Given the fact that we only brought him up here for a “straightforward” procedure, and only expected to be here for up to a week, to say this came as a blow is a massive understatement. For one, I didn’t bring many clothes; I brought enough to last a week and yes, there is a washing machine on the ward, so I’ve been able to stretch it out pretty well. But four t-shirts and pairs of pants can only last so long!

The thing that really hit me with this news is just HOW poorly Hugo has become. I know it must sound stupid – he’s got end-stage liver disease, after all! But we’ve moved from a progressive decline in his health to a sudden and unexpected drop. He was simply too fragile (even though he was stable) before his admission for the Hickman line to cope with two surgeries and the effects of these. It’s knocked him right off his perch. And the doctors – rightly so – have told us that it’s no longer possible (or fair) for us to try and manage his condition on our own from home. When we had him at home, we had some semblance of a normal life – at the very least, we were close to our friends and family, we had his jumparoo, his bedroom, our own comforts. All of a sudden, we’re two hours from home, living on a ward with three other poorly babies, their families, nurses and bleeping machines (and this is all night. ALL NIGHT. Sleep deprivation has taken on a whole new meaning). It’s a pretty sobering change of circumstances.

On top of that, we’ve also decided that we should re-home our cat, Ronnie. We’ve had her for six years, and I’m totally gutted. But we’re hardly ever there now, and even though we have amazing neighbours who look after her at the drop of a hat (and who she loves), it’s just not the same as her having a family to live with. She’s still at home, and we think we’ve found a loving owner for her. But I hadn’t said goodbye. So I made a quick dash home mid-week, arriving back at my flat at 9.30pm on Thursday night after a stop off at my sisters for dinner, and leaving again at 7.30am the following morning with our transplant case in tow, and having said goodbye to Ronnie.

Final sofa snuggles with my Ronster 😦

So from the practical side of things, we’re now more prepared. Which for us (and me in particular) is a massive boost when it comes to coping with the rollercoaster that is living in hospital. We’ve also moved to a bigger room in the Ronald McDonald house, one with a bath and which can fit a travel cot in, so we have space to take Hugo there (when we can), and also for my sister to bring my niece up. I’ve actually upacked my bag (not something I normally do when away from home, even on holiday), and am now living out of a wardrobe again, rather than a suitcase. It’s a small thing, but it makes a big difference.

And always being ones to try and find the silver linings, we’ve also relinquished the responsibilities for Hugo’s medical care to the nurses. We’ve got a huge amount to think about and take in while we’re here, so not having to keep on top of his medications, for instance, and not having to be the ones giving them to him for a while, is a welcome break.

Despite everything the doctors have thrown at him – more albumin and increased diuretics – we’re no longer able to keep his ascites under control. This week it started to affect his breathing and his heart rate, and his tummy went from about 52cm when we first came up to King’s, to 60.5cm, and was tight as a drum. The only option when it reaches this stage is for them to tap some of the fluid off. It provides some immediate relief, but it’s only a temporary solution, and it comes with risks. We didn’t realise quite how temporary it is. He had his first tap on Wednesday, after an urgent ultrasound following some concern about his respiratory rate, and they removed 500ml of fluid. The difference in his appearance, mood and respiration was instant! But even by the Thursday morning, the effects had dwindled. He needed his second tap on Friday. This time, they took 675ml and he lost 3.5cm. But in less than 24 hours, his belly had already gained back 2.5cm. The problem is that every time they do a tap, they have to put a needle into his abdomen, and with that comes risk of infection. They could leave a drain in, but that carries even more risk. In the lead up to transplant, it is vital for him to be in the best health possible. It’s a very fine balance, but he’s reached the point where he can’t manage comfortably without them.

“I love you this much…”

Amazingly, in spite of how poorly he is, how unstimulating the environment is and how uncomfortable he must be, he is smilier than ever at the moment. And even though he’s really struggling to tolerate his milk – he’s now on a slow continuous feed just to try and get as many calories into him as possible in the time before transplant – he’s doing really well with his solids. His favourite is rice pudding Β – he smiles all the way through breakfast when this is on the menu. His resilience is shining through once again. I’m astounded by him, and he’s given me the strength to get through the next few weeks. Even though the situation is shit, he reminds me every day of just how lucky we are to have him.

Cheeky smiley Hugo

So with all of this bearing down on us, the timing of Ross’s assessment couldn’t have been any better. We now have a light at the end of the tunnel.

Our lucky charm – a four leaf clover, given to me on Thursday night by my sister

The biggest hurdle we had was his haematology appointment. This was what we’d been worrying about since we found out his blood results a fortnight earlier. I went down with him for the meeting, only to be turned away – the process has to be so independent, I wasn’t even allowed to sit in. And as it turns out we didn’t need to be so worried. The particular clotting function under query (protein C), Ross was told, is out of range, but is not abnormal. There is zero additional risk to him having surgery.

He also had most of the remaining standard appointments – CT scan, psychologist, anaesthetist. TIck, tick, tick. All that’s left now is seeing the consultant hepatologist, and his independent assessment. Both formalities. It’s frustrating for Ross that he has to come back again to get these bits tied off, but as soon as they’re done we will be moving very quickly towards the thing that has been our focus for the last two months – Hugo getting a new liver.

A very relieved daddy and a happy Hugo just after a tap

Although we’ve pushed for a date, Fiona (the coordinator) can’t give us anything for definite until absolutely all the boxes are ticked. But we’ve been told that the transplant will happen within three weeks. Possibly two. Because Hugo is so young, they don’t necessarily need two theatres to get it done, which is often what can prolong the wait. He will remain on the list for a cadaveric liver, so if one comes up in the meantime, he’ll have that. Either way, by the end of this month, Hugo SHOULD (I can’t yet say will, as I don’t want to tempt fate) have his new liver and be well on the way to recovery.

Now, we’ve got the next phase of this journey to contemplate. For Ross, it’s a major operation, and up to three months off work to recover (the fact that driving is central to his job playing a big part here). I know that he’ll do amazingly. And seeing what this news has done is so uplifting – he’s beyond happy. He really wanted to be the one to help Hugo – to have matching scars and a bond that will tie them for life (well, an even bigger one than they have already). Now, he can. For me, it’s a case of getting my head around what that day will bring – both of my boys having major surgery on one day is a very scary concept. Ross will be in theatre for up to seven hours, Hugo for around ten. They will overlap. I know I won’t be on my own; my mum will be with me every step of the way, as will Ross’s. But it’s not going to be easy.

Cuddles with my boy πŸ™‚

For Hugo, though, it’s a new lease of life. We’ve been told what to expect from all angles – the scary stuff as well as the good. But I can’t focus on the scary side – what it will be like seeing him in intensive care. Or at least, I’ve got to try not to think about it. Instead, we’ve got to focus on just how well he should be after. There’s still a long road ahead – with rejection among one of the many hurdles to encounter along the way – and it won’t be easy, but the success rate of transplants is so good (much better than the Kasai) that we can really start to think about Hugo being on the other side of this. We’ll have a Hugo without the yellow skin and eyes, and with a normal belly. A Hugo without his NG tube, with his old appetite back. Our Hugo. The thought fills us both with so much excitement – and the fact that it is now almost in our grasp is just a dream (almost) come true.

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2 thoughts on “Progress!

  1. We think you are all amazing. We send you our love and best wishes and all the luck in the world for a happy, healthy resolution! Beverly and Gerry XX

    Like

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