So much has happened in the last fortnight, it’s hard to know where to begin.
Up until last Sunday, we’d had a pretty enjoyable couple of weeks. To start with, we managed to last 15 days without Hugo having any bloods taken!! We still had two trips over to QEQM to have a new NG tube (he’s now learning how to pull it out, the little rascal), but I’m not classing those as actual, real hospital trips. So we’ve been able to make the most of the sunny days with lots of walks along the seafront, and have had the chance to catch up with some friends and family without having our plans cancelled. We even made it out to go and watch my brother-in-law’s band (the Blue Moons – if you’re local to Deal, go and watch them. They’re excellent) playing at a pub round the corner. It’s been the most blissful time since Hugo was diagnosed in November, and a little glimmer of what life will be like when we’re on the other side of this and he’s better. Ross also found out he passed the exam he sat in January – I’m so proud of him, given everything that we’ve been through during his studies! So we’ve had some pretty happy times, which has been lovely.
We’ve had a couple of trips to London with Hugo. The first, which was now ten days ago, was for the next stage of Ross’s living donor assessment, and for Hugo to be reviewed while we were at King’s (making the most of being up there). Having three of us, Hugo’s buggy, feeding equipment (we’re now using a pump, which comes with a LOT of extra crap) and overnight bags for all of us packed into my little Picanto to tear up the motorway was not the preferred way of spending the hottest day of the year so far. But we made it up in time to enjoy the last of the afternoon sun with a walk up to the pub on Denmark Hill for dinner from the Ronald McDonald house where we stay when we’re up here. The RM house is an amazing place – we don’t know where we’d have been without it. The charity is so worthwhile – providing rooms (a “home from home”) for families with children at King’s to stay, without the monstrous costs. There is a £20 deposit for your key, which you can – and we do – donate. That’s it. And it’s such a well-equipped place – the rooms are all so comfortable, it has a great kitchen, lovely garden, and lots of support. We’re hoping to do some fundraising for the house when Hugo’s had his transplant – £5,000 sponsors a room for three years with a plaque on the door. You can also get a leaf, bird or treehouse plaque with Hugo’s name engraved up on the wall in the house. We want a room, and for Hugo to be up on that wall. So watch this space!
Hugo’s review was pretty straightforward – as we had another planned trip shortly after, they decided not to bother with bloods. We reviewed his meds, made some adjustments, had an ultrasound (the best one he’s had in a while), had another NG tube (I mean, really?!) and that was pretty much it for him. Ross had his ultrasound and x-ray, and – most crucially – his blood results and a meeting with the surgeon, Professor Heaton. 99% of everything so far is looking good – he’s B+, which is a blood match, his liver isn’t fatty, most of his bloods came back perfect. One didn’t, however. And unfortunately, it’s a liver function that’s out of normal range – one of his clotting functions. Basically, his blood clots quicker than normal, which would put him at a higher risk of DVT and pulminary embolism during surgery than most. And also, as it’s a liver function, this is something that Hugo would inherit should the transplant come from Ross. We don’t know yet how much of a blocker this is, but Ross has had to be referred to see the haematologist to determine whether it is possible to continue down this road. They’ve not ruled it out, but there is a chance it will be. We’ve been assured the haem team are enablers, not blockers, so it would only be stopped if there was very good reason. Ross is so invested in doing this – he really wants to be the one to help Hugo, to save his life. I hate that it’s so out of his (and our) hands. We’ve got to wait another week for these appointments, and for the final parts of his assessment (CT scans etc). It may not sound like long, but it’s too long for us.
The thing is, Hugo is starting to get worse. His belly has been looking pretty good over the last couple of weeks (although more on this later), but that’s pretty much where the good ends. He’s not tolerating his feeds very well, and is being sick quite a lot. He’s now starting to scratch. He’s getting rattier and rattier – even cuddles aren’t providing any comfort at the moment, which I’m finding incredibly hard. They think this could be down to high ammonia levels in the blood. Nothing that can be fixed now; the doctors can’t really say much other than “he needs a transplant”. It’s reaching the stage where we’re just watching him get yellower and poorlier, and we’re just hoping that we get a liver soon. We’ve been told he has time – but we don’t have an indefinite amount of time. And that is beyond scary.
Fiona (the living donor co-ordinator) seems reluctant to assess me at the moment, as Hugo is still so young my liver will still be quite fatty. So she suggested at the start of the week that we give out her number to anyone who has volunteered to be a donor, and I believe she’s been kept pretty busy with phone calls from friends and family over the last couple of days. Of course, we’re hoping it doesn’t get that far. But the fact that there are so many people who are willing to be considered, and that have actually called her to put themselves down to be looked at, is the most touching thing. So just a quick and very public message to those of you (and you know who you are) who have put yourselves forward – thank you, so so much. You’ll never know how much it means to me and Ross, and we’ll never be able to find the words to really explain it. But however this pans out, we’ll always be incredibly grateful to you all. And we’ll probably owe you a drink or two when this is all over.
Right now, we’re staying on the Rays of Sunshine ward at King’s, as Hugo has had a Hickman line put in. This is basically a semi-permanent line into one of his major blood vessels to allow easy access for taking bloods and giving IV treatments (albumin, fluids etc). We asked for it, as it means NO MORE NEEDLES! We’ve reached breaking point with his veins; he needs bloods too often to keep getting at him the way we are. It would also mean his bloods could be taken at home by the community nurses, which will provide a welcome break from the constant hospital trips (allthough I reckon Hugo will miss the attention from the nurses at QEQM!) Even though it’s scary that he’s had to go through another operation, it’s a relatively straightforward procedure (in comparison to the surgery he’s already had, and the one looming ahead of him, anyway) and it will alleviate some of the constant nastiness of his current care. Or so we thought. After having his slot cancelled on Tuesday, he eventually had the operation on Wednesday. It took a couple of hours longer than we were told it should (he also had his hernia fixed while in theatre – two birds, one stone, and all that), and when we got him back after four hours we were told his heart rate had increased after the line went in, and they’d had to adjust its position. Ok, a slight complication, but it was dealt with. The next morning the doctors on Rays carried out an x-ray, and it turned out that the line had somehow slipped, and was now far too far into his heart to be left untouched. It could be quite dangerous. As frustrating as it was, it happened and had to be dealt with. So yesterday, he had to go back into theatre to repeat the op. Happily, this time he was out in two hours, and they’ve x-rayed several times to confirm the line is in the right place. Unhappily, it meant he needed more cannulas in the interim, which they struggled to get in and kept falling out, so he’s now covered in prick marks and bruises again. It kind of defeated the whole object of us being here – he shouldn’t need to be pricked anymore. But hopefully, that’s it done now and we can finally offer him that relief.
However – and there’s always a however with Hugo at the moment, it seems – because Hugo has been nil by mouth for a total of three days (something he’s not actually been that bothered by – I think he’s enjoyed the break!), he missed some of his meds, including his diuretic which helps with the ascites. Because of that, coupled with a lack of nutrition and the standard effects of having surgery and a general anesthetic, his ascites has boomed again. We’d just managed to get his belly under control – as I said earlier, it’s the best it’s been since January over the last few weeks. But it jumped up in size by about 4cm from Wednesday to Thursday, the veins became very prominent again and it went from being very soft to very, very tight. He was also not peeing. Recognising the signs, I told the doctors that I thought he needed albumin. I know my son, and I know that he is not capable of flushing out the fluid himself. Unfortunately, the doctor didn’t listen to me (or look at Hugo) and instead just looked at his numbers, which suggested that he didn’t need albumin. A battle to get him some relief from his symptoms is the last thing we need to deal with at the moment, but it’s what I was unexpectedly faced with. Thankfully, I had others to turn to – one of the (lovely!) transplant coordinators, Gill, a senior nurse and the ward matron. When they looked at Hugo, they could instantly recognise that he needed something as he looked clinically more unwell, and swiftly did some arse kicking on my behalf. When the consultant came on ward round, he took one look and said “Hugo needs albumin”, among other things (daily weight and girth measurements, and restricted fluid intake while the ascites remained at large). Twelve hours after I knew he needed it, it finally happened. His tummy hasn’t gone down in size yet (something not helped by the repeat surgery), but we’re on their backs now to keep on top of it and not let it get even worse.
Had the operation been as straightforward as hoped, we’d have been home after 24 hours. But as it stands, it looks like we’ll be here for a few more days. With the complications in general and the increased ascites, Hugo is STILL off feeds (all that hard work and tears put into getting his weight up, gone, as we can’t get any milk into him), so we have to wait to get his fluid balance sorted and his feeding back up to scratch here at hospital before we can go home. This morning, we also had a question mark raised over another blood level that is now out of kilter (his haemoglobin). So I’m resigning myself to at least another two or three nights here. Thankfully, Ross is here at the moment. He hasn’t been able to stay with us much on this trip – if he is the donor, he’ll need about three months off work, and he just doesn’t want to test their kindness and support, which is fair enough! He made it up unexpectedly midweek to give me a night off (I was getting beyond coping point with the sleep deprivation), and he’s here now for the weekend. Hugo loves having his daddy here; we both miss him like crazy when he’s at home without us. But it’s our lives at the moment, and we have such wonderful support that we know that we’ll somehow make it through.