Days 14 – 24: follow your instincts!

I’m starting this blog with a couple of apologies, I’m afraid. I’m sorry (again) for the huge delay in between posts, but Hugo has been keeping me on my toes more than usual – if that were even possible! I’m also going to apologise in advance for this one. You will know that I’ve made a real effort to stay as positive as possible during this whole journey, in my blog and in real life. But the last ten days have been tough.

It actually started off really, really well. Hugo was discharged from King’s on day 14 – just two weeks after his op! When Natalie, our nurse, told me a couple of days before that this was the plan, I burst into (happy) tears on her. It was really surprising, as I was expecting to be there for a month PT; the average recovery time is about three weeks, and it can often be longer if they are very poorly beforehand, like Hugo was, and have severe ascites, like Hugo did. So to be told after two weeks that he was well enough to go was just staggering. I’ll be honest – I felt it was too soon, but if they really thought he was well enough then we were happy to take it!

When Friday came, I packed up the house and the bed space, hugged everyone in sight, gave lots of people wine and cake, and eventually made it off the ward with my sister in law and her other half to make the journey home. Being back home after nine weeks away was really surreal – I had become so used to living in a tiny bed space with no privacy and just a curtain for a wall, I forgot how big my flat really was! I cried as soon as Amy and Dan had left – I was just so relieved to be back.

My boys happy to be back together

For the most part, being at home was totally and utterly lush. We didn’t unlock the front door for the weekend (apart from to let in a bit of shopping – after two months of solidly eating crap I was craving something fresh and home cooked). We did very little apart from getting used to our new routine and getting on with some proper playing. And actually, Hugo’s meds weren’t too daunting at all – they’re far easier than they were pre-transplant, at any rate! Hugo looked a bit bemused by the jumparoo, but soon remembered how much fun it was. I caught up on Hollyoaks (yes, trashy I know, but I love it) and lazed on the sofa with Ross, a Bud and a box of maltesers (which, I realised, taste so much better out of a box than out of a bag! Anyone ever notice that?!) Hugo slept amazingly well in his own bed, and I slept amazingly well in mine. I had marmite on toast for the first time in two months – a little thing, yes, but a luxury to me. Ross was thrilled to have his boy home for his first ever Father’s day. I got back in the kitchen and cooked dinner for us and for Hugo for the first time in months. Unfortunately, Hugo’s become too accustomed to jarred foods now, which I’m really gutted about; I love cooking and had planned to cook all of Hugo’s food when it came to weaning, so I was really excited about making him something fresh and delicious. But no, he hated it. Cheers, son!

Tea in a proper mug, and marmite on toast. The breakfast of dreams.
Not totally sure about the jumparoo yet!

I say it was perfect for the most part. Ross was still really fragile by the time we got home (let’s not forget that he was only two weeks post-op, too), so wasn’t able to lend a hand getting stuck in with any of the chores. Obviously, that’s completely to be expected and I was totally fine with it, but I wasn’t quite prepared for the relentlessness of the tasks at hand – tending to Hugo (including meds, feeding, playing, changing stinkybums, bathing, settling overnight etc), unpacking, doing washing, cooking, clearing up, washing up… those who know us will know that Ross is a very, VERY hands-on husband. He does a huge amount around the house (yes, I’m very lucky!) So going from being in the hospital environment, with nurses buzzing around to lend a hand 24 hours a day, to being at home without that support was a bit of a shock to the system.

On Sunday, Hugo was a tad unsettled. We put it down to the change in routine and environment, but I started to keep a close eye. He was feeling a bit warm, so I started to check his temperatures. It was going a bit high, but not to worrying levels. In the evening he was happy and chirpy again, giving us lots of laughs during his bathtime and going to bed happy. But from about 10pm, he started crying, and he didn’t stop – all night. In the middle of the night, he was radiating heat, so I checked again, and he had spiked to 38.3. So on Monday morning (day 16), two days after getting Hugo home, I was packing the car back up and getting ready to head back over to QEQM.

Even though I knew there were going to be bumps in the road (it was only Sunday afternoon that I was on the phone to my sister saying how I was expecting it, that it was nothing to be frightened of, etc), I didn’t handle Monday well. At all. I was almost at the anxiety attack stage – crying, couldn’t breathe, couldn’t stand. To be honest, I hadn’t expected us to be heading back to hospital quite so quickly, even though I had felt that we had been discharged slightly too early. It didn’t help that I was totally sleep deprived. Or that I had decided to leave the washing up from Sunday. Or that I thought Hugo looked a tinge yellow again, that his belly looked a tad bigger, and his pee a teensy tiny bit too dark – something I think Ross and my mum didn’t quite agree with, but the gut feeling – the instinct – was there; Hugo wasn’t right, and I couldn’t shake it. I called my mum quite early to come and help (she is affectionately known as “pot wash” at both mine and my sister’s houses), so she got on with the leftover chores and allowed me to prepare, and by the time we left I had got myself together a bit.

Crazy-hair Hugo, not looking too fussed about being back at QEQM

We spent one night at QEQM, which is pretty much a blur. They were really good when we got there – took Hugo straight into a room so he wasn’t exposed to the other kids on the ward, did his vitals and his bloods early, and left us to wait. About six hours down the line – by which time one of the lovely nurses, Jess (who actually used to work on Rays), had ushered me off to the parents room round the corner to get some sleep; she could see how I wasn’t coping and even though she wasn’t looking after Hugo, she really stepped in to help – the doctor came back with some results and started Hugo on IV antibiotics. The worry was that he had an infection, and his bile-related liver markers (bilirubin and Gamma GT) had both increased; his bili had riseen from 19 (normal levels) to 68. So I wasn’t going crazy when I thought he was yellower! The plan was 48 hours of IV antibiotics and then hopefully, he’d be ok to go back home.

However. As always. This is, of course, Hugo. He doesn’t follow a plan. He actually responded really well to the antibiotics; he slept amazingly well on Monday night, and was much perkier on Tuesday. But, on Tuesday evening, his poo went white. Not just pale – WHITE. And not just one nappy – three. I lost it; I went from an almost anxiety attack on Monday morning to a full blown panic induced meltdown. The first thing that entered my head was that it was all happening again. We’ve spent the last six months pretty much just focused getting Hugo through, getting him to the point where he was able to start being well, and he wouldn’t have the fated pale poo anymore, and suddenly they were back. I think my heart actually stopped for a few seconds when I saw it. I’m sorry if that sounds melodramatic, but it’s the only way I can describe it. The thought of having to do it all again was heartbreaking. The worry about what it could mean, and not knowing whether his new liver was ok, was just crippling. The doctor phoned King’s straight away, and when he came in to say King’s wanted Hugo back, I was actually relieved. I knew he needed to be back there. The fact that they decided to transport him by ambulance in the middle of the night was perhaps a bit unnecessary. Amy brought Ross over to QEQM so that I wasn’t on my own all evening, and he brought some more things for me to take to London (again, I had two t-shirts, and this time Hugo had pooed all down one of them). I was just so happy to see him; he gives me such strength, even just by being with us. It was the little boost I needed.

We arrived back at King’s at about 4am on Wednesday morning (day 18), and it was pretty much straight back to business. I was still shattered, but I immediately felt more secure. My mum dropped her plans and came up, as she has done every week since we’ve been here. The woman is my rock. Even though I’m happier here than at QEQM, it’s still not been easy. Because they’ve been trying to diagnose what is behind the white poo, they’ve had to do various investigations on Hugo; biopsies, MRI scans, abdiominal taps, all of which require him to be nil by mouth for a minimum of six hours. And many of which have been cancelled at the last minute (biopsies), or failed (MRI). They thought it was a stricture, a swelling or blockage of the bile ducts; it’s not. They thought it could be a possible bile leak (which is serious, and would require more surgery); it’s not. They’ve not yet investigated rejection, which surprises me, although I have faith in their thought process. And although I have faith in them, I found it incredibly hard having to starve my baby boy for four days running. Today is a fifth day nil by mouth, as they thought he still needed a biopsy, but we’ve just been told it isn’t happening again.  I’ve tried to see their reasoning, but I’ve had a couple of breakdowns about it. And as much as they understand, they can’t put him at risk just to placate my instincts as his mum.

 

Happy Hugo at King’s
  

Daddy’s beard is a legitimate toy

Now, we’re on day 24. Ross is up in London with us (my mum took the train home on Friday afternoon so she could drive him up on Saturday. Seriously. She’s my rock), so I’m feeling stronger than I have been. We had a family dawdle out on Saturday (Ross can’t go any faster yet!) which lifted all of our spirits. The glass of prosecco certainly helped mine! Hugo seems to be doing well, despite still not knowing what happened; Hector (his surgeon) said we may well not know what caused this particular blip. That’s fine by me, if we get past it. From what they have been saying, it sounds like he was possibly brewing an infection, which caused an inflammation in his bile ducts and has now been dealt with by the antibiotics. That’s what I’m hoping, anyway. His colour and his belly both seem to have improved, his pee is nice and clear and his poo has been lovely and yellow/brown/orange for three days now. He has been chuckling away at the most random things – the blue curtain, Ross pretending to be Daddy Pig, a chair. It definitely feels like he’s better. And I feel better for it. But I know the doctors won’t let him back home again until they are confident that they have treated whatever it is, or that it has righted itself. So he’s been treated for infection with IV antibiotics for a week now – that’s one possible cause dealt with. I did ask why they couldn’t just treat for both infection and rejection; it’s because they are at opposite ends of the spectrum for treatment. Infection requires antibiotics. Rejection requires steroids, which suppresses the immune system. So if he did have an infection, and they gave the steroid, they could well make him sicker. They really have always got his back.

I think the hard thing this week has been being suddenly thrusted back into the unknown, the unexpected. To know that something was up with Hugo, but not what it was or what could be done. Going home was such a high, but the week that followed has been such a huge crash that I’ve not coped at all well. We were the closest we’ve been since April to having our lives back. Being home consists of so many little things – not living out of a suitcase, having space and toys for Hugo, being able to eat well and have proper tea again – together, they make a massive difference to daily life. Hugo also turns nine months old today, too, and I think that has had an effect on me. My maternity leave is essentially up, but I’m nowhere near able to go back to work. I’ve been reflecting on the maternity leave I’ve had, and I feel really sad about it. I’ve spent most of it in hospital with Hugo, which wasn’t part of the plan at all. We’ve not been able to do anything that we had dreamed of doing, and it feels really unfair. I’ve tried really hard not to let myself rue the situation and what we’ve missed out on, as it’s totally out of our control, but it’s hard to keep that up all the time. Hugo has given us a huge amount of joy during his nine months, yes, and we really do feel very lucky that he is our baby. But this last week I’ve also felt the grief for the life we have lost. I just want to get to the stage where we’re home for more time than we’re at hospital, able to enjoy our family life, and to just be happy again.

He really is mummy’s little tough guy

I know that, actually, we’re not in a different situation than we would have been had we not been discharged on day 14. I expected to still be here at this point in time. But it’s that blasted rollercoaster again. I had my home life within my grasp, and as much as we loved our weekend at home, it being so short lived was a blow. I’m relieved that I followed my gut again, though, and that they started treating him early. Instinct is a powerful thing, and I’m glad that’s one thing I don’t have to leave up here when we do eventually get out of King’s for Hugo’s homecoming #2… although this time, I’m definitely going to smuggle one of the nurses home with us as well. You just can’t be too careful, and I know my little flirty Bertie boy would love it!

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4 thoughts on “Days 14 – 24: follow your instincts!

  1. Dear Polly
    I so wish I could reach across the miles and hug you (without passing on any bugs obv!). Sounds like one hell of a shitty week. Although I know that this is a very long road I pray to whatever deity/magical creatures that may be listening that it’s the last of the shitty times. I hope today is better and tomorrow better still.
    Big hugs xxxx
    Steph

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  2. I don’t know what to say, Polly, except that it’s perfectly natural you should crumble at the edges a bit at this stage. It’s incredible you didn’t before, as it’s not only a good night’s sleep you need, but a good dose of emotional rest too. You have a great family, and you know that they’re doing just as much as they can for Hugo through Ross and you. Val has been a rock for her friends, so it doesn’t surprise me one bit that she’s a mountain of rocks for you. There’s a solid amount of love for Hugo, Ross and you to cling on to. I pray he’ll go on getting better – you knew some setbacks were inevitable, but the rollercoaster has been a bit too steep and dipped too suddenly for you to pause for enough breath. Keep on seeking distraction whenever possible, keep sane, positive, caring to the amazing extent you are capable of, and I know Hugo, Ross and you will pull through. That’s a lovely picture of your 2 boys together xxx

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