When your life is whipped out from beneath you, when you take your child to hospital for something relatively ‘simple’, expecting to take them home within a week only to be told that actually, you can’t, everything remains in a spin for quite some time. Living in hospital is a totally surreal existence, one that can only really be understood by those who have done it. I certainly became totally institutionalised up at King’s; barring two days at home and two days at QEQM we were there for 73 days, so I guess it isn’t really surprising.
Happily, we’re now back at home again. And Hugo has lasted an amazing ten days so far! Ok, we’ve spent two days at King’s in this time, but this was planned prior to his discharge. The team at King’s never figured out exactly what was behind his blip, despite all of the tests and scans. He seems to be over it, whatever it was. But because they didn’t diagnose, they couldn’t say for sure that it was dealt with, so they were nervous packing us back off home. Totally understandable. However, I had become rather desperate to get him out of there by then – he wasn’t receiving any treatment at that stage, only four-hourly obs by the nurses – so at ward round on Wednesday we pushed for discharge on the agreement that I would drive him up to London for day clinics whenever they wanted. And they agreed.
To start with, being back home was almost as surreal as living on the hospital ward. I had to find my feet again. It’s been a bit scary being away from the security blanket that the ward had become – and I’ll admit that I miss being there a little bit. Not in the sense that I want to go back; obviously, I don’t! But it became very familiar and I felt like I formed some real friendships up there (I’ve caught myself talking like some of the nurses, so I must have been around them for too long), so it’s strange not being around those faces and surroundings anymore. I’ve also been a bit nervous of getting too comfortable, just in case something else was to happen. But thankfully, things, so far, have been good. Really good.
There are so many things that I didn’t realise how much I had missed, how much I would appreciate when I got home. Little things that make all the difference. Such as…
- Eating off a plate. Ok, that’s really boring. But it’s something I didn’t get in hospital – the canteen food came in polystyrene tubs and the ward only provided paper plates and plastic cutlery. Sure, I’d eat away from the hospital as much as possible, but even then you weren’t guaranteed a plate; burger on a board, anyone?! Chips in a mug?! NO. JUST NO. Put it on a plate, please.
- Fresh, home cooked food. Mostly, anyway; I was pleased to see that the local pizza takeaway still had my number stored on their system. Having a fridge full of fresh food, and not having to label it ‘Hugo Wooding Bed 6’, is blooming lovely. I’m not even bothered with the washing up, something I NEVER used to do – it’s a symbol of normality to me, and I’m actually enjoying it… a little bit, anyway.
- Being near my friends again. I’ve missed so much of their lives – growing babies, moving away, changing jobs; just life carrying on in general. It’s nice to finally feel like we’re back in the fold a bit. Everyone has been so excited for us to be back, but also really understanding of our restrictions at the moment, so we feel incredibly supported and very lucky. Which makes the whole transition a lot easier.
- Living with my husband. Even though we spent as much time as we could together while we were at King’s, it felt a bit like we were back to dating – we’d spend a few hours together, maybe go for dinner, then we’d go and sleep in different places. It was a weird place to be in after seven years together, and it only really hit me how bloody awful it had been when I got back. Ross is still recovering, and is doing really well; his secret abs are healing (during his surgery, they discovered that his core muscles were actually really tight. Abs. They were a bit surprised, though, as no-one could see them…) and he’s getting stronger every day. Having some quality family time, on our own, and seeing my boys play together after everything they’ve been through is the best feeling in the world.
- Having freedom. Having variety. Having my own transport. Not having to ask permission to take Hugo out for an hour. Being in charge again. Something that I definitely took for granted before, and something that I now appreciate more than anything. And we’ve certainly been making the most of it with slow walks and lazy days going where we want, when we want. Bliss.
Then, of course, there’s Hugo. Where do I start?! Well, first off, Hugo’s two day appointments at King’s were just that – DAY appointments. We’ve spent every night since being home in our own beds. His bloods are going in the right direction – his bilirubin is now nearly back to normal, his Gamma GT is now below 200, which is the best yet since transplant, although there’s still a way to go. His other key liver function tests are all within normal range, and his scan was fine. His colour is really good, his eyes are becoming beautifully clear, his poos are still nice and dark, and his pee clear. So far, so good.
Aside from Hugo’s clinical wellness, he has made one other major step forward since coming home. He drinks! Actually, he doesn’t just drink – he guzzles. We decided to try adding Nesquik to his milk last Wednesday, just to see whether it really was, as we suspected, the flavour that he didn’t like. And hey presto – just like that he started feeding, and he hasn’t looked back. He’s not even that bothered by taking his meds orally now. In fact, he’s doing so well that on Saturday, 116 days since we first started the NG feeding and 36 days post transplant, we took the tube out! This was a massive milestone for us – we didn’t think it would be out so soon. His feeding has been one of the biggest struggles we’ve had through all of this, and we’d have been happy if he was feeding and we could take the tube out by his first birthday in September, so for him to achieve it so soon is just incredible. And it’s made a huge difference to him, too.
Hugo has always been a happy boy. But his happiness has reached new levels, and losing the tube is a huge part of that. When he sees his bottle, instead of screaming and getting freaked out he goes crazy with excitement. Mealtimes have become so much more fun, as we don’t have to worry about him getting puree all over his tube tape; we can relax with him. He’s trying new flavours every day, and he’s even starting to eat some of the food I’ve made him. If he sees a Dairylea triangle, a yoghurt pot or a banana, he goes totally beserk. He HAS to have it fed to him NOW. He CAN’T wait, it HAS to be NOW. He’s a right little chunky bum, and it’s amazing. It feels like we really have our baby boy back now; he was always such a gannet in the first couple of months of his life, and we lost that part of him for a while. He has done us so, so proud.
Hugo is, in fact, so happy now that he won’t take naps. Even when he is clearly shattered, as soon as we put him into his bed he wakes up, ready to play. I genuinely think it’s because he now feels so well, he doesn’t want to lose any hours in the day to sleep. He has a jam-packed schedule of bouncing in his jumparoo, learning to roll (he’s really, really nearly there) on the play mat, sitting up, watching cartoons (normally Peppa Pig, which I absolutely love), flying, chatting, and laughing his head off to do. There’s just no more time for sleep.
I keep having to pinch myself to believe that this is our life at the moment; it seemed so far away at times, and every time it was nearly within my grasp it slipped away again. I know it may not last indefinitely; he’s going to face challenges as the days, weeks and months go on. But right now, this is what I imagined being a mum would be. He’s home, he’s happy and he’s thriving, and it makes the last few months so, so worth it.