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!!!
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.
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!
Third time really was lucky for us.