“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, 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.

Pfffffft!

Poor Mickey…

Big smiles from my boy!

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!

Drinking from his sippy cup

Looking too cute after a blueberry brekkie

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.

Smiles at the park

His duckie following

My boys

Family laughs 🙂

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 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

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

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.