Days 37–47: new blood

I reckon some people won’t believe the U-turn we took after my last post. I almost feel a bit reluctant to write about the good side of life at the moment, in case I’m jinxing it. But then, I guess, if I were to follow that line of superstition I’d have driven myself so mad I’d have been sectioned by now.

We lasted about four hours after the last blog was posted before we were on our way back to QEQM with Hugo. Yes, I know. You can’t make this shit up. Thankfully, this time we had only short, if a bit too frequent, stays in hospital. And even more thankfully, something totally random allowed us to catch a brewing blip extra early.

On the Saturday, Hugo wasn’t quite himself – not quite so happy, a bit more lethargic, a bit whinier than usual. But it was a scorching hot day, so you could forgive him. And anyway, we’re all allowed an off day every so often. But we started to worry as every time we picked him up, he screamed in pain. We had Ross’s sister, Amy, over to spend some proper quality time with Hugo (and to have some bubbly with me), and as we were giving him his wash (normally his happiest and most excitable time of day), he was inconsolable. Crying to the point of exhaustion. We examined his underarms, and noticed that he was slightly red and swollen on his right side – the side where his Hickman line is. A quick phone call to Rays later, and we were on our way over to Rainbow.

Back in hospital. Sigh.

Without wanting to sound all self-pitying about it (that’s not my style), I really did feel a bit fed up at that moment that every time I’ve tried to plan something for me, it doesn’t happen because we end up in hospital. Ross tells me that it will get better, that I will get my life back, but it can feel pretty bleak at times. I guess it’s all part of this journey, and I know that Ross is right, really (don’t tell him, though!) My mum told me to try and think longer term, essentially backing up what Ross had said; things WILL get easier, we WILL get our lives back. It’s just a case of WHEN. We’re still only just out of the eye of the storm, so we can’t expect it to happen just yet. And even though I know that, it can still be pretty deflating to keep losing my grip on having a life and to go back to hospital life.

We ended up only being at hospital for about 3 hours that night. Hugo perked up loads on the way over, and the redness and swelling had faded by the time we got there. Typical of Hugo, really. They gave him a thorough check over, x-rayed to check the line was in the right place, checked it was flushing and working properly, and took some routine bloods and line cultures (the immediate worry with anything unusual at the moment is a line infection). Everything seemed fine – his liver function tests had all come back ok, there was just the full blood count to come back, so we went back off home. The doctors said they would ring if anything was amiss.

And of course, at 8am the following morning, the phone rang. Hugo’s CRP (infection markers) was high. It should be below 10, but his was 116. They wanted him back ASAP for further bloods, observations and probably to start him on IV antibiotics, even though he had no signs of an infection – usually he has a temperature, but this time there was nothing. King’s wanted him started on antibiotics on Sunday after the CRP was even higher at 166, so we settled in to the room expecting to be there for a week. On the Monday, his CRP had come back down to 116, and the nurse told us that the antibiotics were just once a day, so we could actually take him home and have him treated there! He had a total of five days of antibiotics, and by the Thursday his CRP was down to 30 so King’s were happy that they had done their job. We had managed to nip it in the bud again, even though we didn’t suspect an infection when we took him to hospital; all the while these markers were raised, he still didn’t show any signs of infection – no temperatures, he wasn’t off his food (he even enjoyed his first hospital meal on the Monday, and we all know how rank they are), no cough, no cold. It was weird – where was the infection?!

Unfortunately, it turned out that the infection (we never discovered where it was, by the way) wasn’t the only thing we had to contend with last week. About two hours after we got Hugo home on the Monday, QEQM rang to say that his haemoglobin (HB) was really low, and that he needed an urgent overnight blood transfusion. Obviously, this was a really scary thing to be told. I took Hugo back over, and he had repeat bloods in the early evening. The sample eventually came back and it wasn’t as low as they had thought (it was 68 instead of 55; they want it about 70); the earlier bloods must have been contaminated, or diluted. They thought he would probably need a transfusion, but it wouldn’t happen overnight. So, again, I packed him off back home.

We eventually heard quite late on the Tuesday that King’s did want Hugo to have a transfusion the following day, as his HB had dropped to 66. By the time we’d been told this, the community nurse had been out to take more bloods, and shortly after speaking to QEQM they were back to take YET MORE bloods for the cross match. Now, I don’t know if it’s just me, but this seems totally stupid. Hugo had bloods taken on Saturday, Sunday, twice on Monday and twice on Tuesday. I mean, REALLY? No wonder his HB was dropping – they weren’t leaving him with anything!

Chilling out mid-transfusion

Our boy looking AMAZING post-transfusion

Hugo had his blood transfusion on the Wednesday. It took about 3 hours, so we were there and back within a day. And he responded amazingly. His bilirubin had come back as normal on the Tuesday, which is excellent, but the community nurse thought he still looked a bit sallow, a bit pale. As soon as he’d been pumped full of fresh B+ blood he turned the most perfect, gorgeous colour. Pale pink, with rosy cheeks. We finally, for the first time in his life, know what colour our baby should be. We now have a benchmark for him. And not only did he look amazing, he became so much happier and full of energy. I know, I keep saying this is improving. But it really, really is.

Happily, the transfusion has boosted him so much that we haven’t needed to take him back in. So even though we’ve had a blip, since his discharge from King’s on July 1^st, the time we’ve spent at home is currently outweighing the time spent in hospital. Hugo’s cheeky character is really starting to shine through now, and he’s doing new things all the time. He pulls funny faces at us. He is almost rolling, and is figuring out how to move to get what he wants. He dives upside down and chuckles with so much glee that I cry with laughter. He comes out on trips to town, for lunch or just a mooch, and is (almost) always as good as gold. He even let us both go out for Ross’s cousins 30^th birthday; Ross’s dad and step-mum came to babysit, and instead of us ending up in hospital, we actually made it out. Ross had to take it very easy, of course, whereas I allowed myself to get a bit glammed up and let my hair down for the first time in months. It felt good… Ok I didn’t feel quite so good the next day! But I was buzzing from just getting out and seeing all the family, from having some normality, so it was worth the hangover.

Getting stronger by the day

Loving his first ride on his rocking horse

Bored of shopping, mumma!

After his transfusion, we saw a blood transfusion practitioner, and she spoke to us all about blood. The whole blood donation process is incredible – another amazing part of our NHS and what it does. There are so many things that you don’t even consider when you’re being treated by our medical system, that you take for granted. She told us that blood bags are measured into two sizes: neonatal, and adult. Nothing for paediatrics, nothing for those between three months and 18 years – not in our area, anyway. So although Hugo only needed 100ml of blood, his bag was the standard adult size of 300ml. The other 200ml has to go to waste. I very naively thought that the blood was stored in some kind of barrel, and they siphoned off what they needed. Donated blood also only lasts for 35 days. That feels like a really, really short period of time. It feels like there was potentially so much being wasted, which just makes the whole donation system even more valuable.

As soon as we got home from Hugo’s transfusion, we signed up to donate blood. I’ve never done it before as I’m rather squeamish – I hate even having blood tests. But I’ve kind of had to put all of that to one side while being in hospital with Hugo. And anyway, even if I didn’t feel a bit better about the actual process, the fact that Hugo has had so many blood products, and a few transfusions, it’s a no brainer to both Ross and me now. We then found out that there was a blood drive in Deal the following Monday, which happened to be our second wedding anniversary. We thought it was the ideal way to spend the day; to give a bit back to a system that has saved our boy countless times. Unfortunately, we weren’t able to get down there, but we’ve got the next date in our diaries and we’re both really excited about starting our donations.

If my blog can achieve anything, it’s to encourage people to buy into the amazing NHS that we have. To help raise awareness, to get people to sign up to the organ donor register, and to give blood. So many people being treated in our hospitals rely on the generosity of others, and sometimes it takes it being so close to home to really highlight the importance of it. Of course, I now wish I’d donated blood for the last twelve years. But I haven’t. And I’m not going to waste my energy regretting that. Rather, I’m going to do something – I’m going to give blood. I know Hugo would give a huge high five to anyone else doing the same.