News, a feeding tube and a Very Bad Day

Hugo had his transplant assessment last week.

It was intense. Over two days, we met our (lovely) transplant coordinator, Justine, who gently took us through everything. We saw an anesthetist, surgeon, psychologist, dietician, social support worker, consultant hepatologist and clinical nurse specialist. Hugo had an ultrasound and an ECG, bloods taken and an albumin infusion given. All in all, it went pretty smoothly – in terms of the condition of his liver there were no surprises. Things are getting progressively worse, he needs a transplant… all things we’ve been told before and were expecting to hear.

My one fear in the lead up to his assessment was that he was going to be put on a feeding (NG) tube. We knew that Hugo’s feeding wasn’t up to scratch, but we thought we were just about managing it for him. Unfortunately, we were wrong on this one. Even though his weight has gone up, his arm measurement has started to drop –an indication that he’s not getting enough calories (his weight is skewed by the ascites, so increases aren’t necessarily a good thing for him). It was pretty hard to accept that we were going to have to go down the NG route – two of the things we’ve consistently felt pretty good about were that he was a good feeder, and that he didn’t look poorly on the surface. Suddenly, these were no longer true. He’s going to look like a poorly baby. Everyone is going to be able to see this tube coming out of his nose, and the thought of people looking at him in pity really upsets me. And the fact I can’t get him to drink makes me feel like I’ve failed a little. I know, really, that isn’t the case, but giving your baby nourishment is one of the most basic of parts of being a parent. No matter what we try, we just can’t get him to take what he needs. So we know that if they are insisting on it, it has to be for good reason.

We got home on Wednesday evening, and had a really enjoyable week. Despite having been a bit more of a grouchbag over the last couple of weeks (he’s probably, understandably, feeling totally fed up, as well as lethargic from the dwindling energy supply) Hugo was his usual cheeky self, doing lots of bouncing in the jumparoo, and learning lots of new tricks (reaching out and grabbing is his current favourite). I had my first ever Mother’s Day – not a day we normally celebrate much in my family (barring the famous ‘frog on skis’ I made for my mum once, aged 8 (ish) and again at age 22), but a treat nonetheless, mostly because Ross cooked me bacon for the first time EVER, and I got to stay in bed beyond 8am (with lots of Hugo cuddles during the day too, of course).

A yellow Mother's Day pressie from my boy. How apt!
A yellow Mother’s Day pressie from my boy. How apt!

On Friday, we spoke to Justine and went through the next steps following Hugo’s assessment. Hugo was to be put forward for listing at the transplant team meeting the following Tuesday. I also spoke to the staff at Rainbow ward and penciled in a date to take Hugo in for his NG tube and our training. Also Tuesday. All of a sudden, we had a massive, really important day looming ahead of us.

Monday came, and was what can only be called a Very Bad Day. I woke with a terrible headache, Hugo woke in a grump, and it didn’t get much better. He wouldn’t feed, he refused to nap, he cried – a lot. In spite of my mum coming over to lend a hand, I was totally stressed and suddenly feeling very exhausted and unable to cope. The reality of what was going to happen the next day – him (hopefully) being listed, and the NG tube going in – got to me. We’re actually quite lucky that we don’t have many bad days – we’ve proved ourselves to be pretty good at coping with everything, accepting the path Hugo’s disease is taking as it unfolds and facing the challenges head on. But we do have them. I think the fact that we know we are good at coping helps to us get through of the down days. Having such an amazing support network helps, of course. When Ross got home from work he sent me to bed, and did Hugo’s night feed so I could get a decent rest to build up some energy for the week ahead.

Happily, Tuesday has been and gone, and we’ve got these two hurdles out of the way. Not surprisingly, having the tube inserted was pretty traumatic, both for us and Hugo (although nothing a lot of cuddles and repetitive singing of ‘Incey Wincey Spider’ couldn’t fix). It’s actually much easier to use than we thought, and it’s taken the weight off our shoulders too; we no longer have to fight with him to try and get the volume he needs in. It’s slow going – we’re still working out how much he can tolerate, and we’re yet to meet the daily target from King’s – but we are getting more in him every day. And it’s helping get him back to his normal, chirpy self. We’re back to getting giant smiles when he’s awake, and it’s bloody lovely.

Beaming smiles and full of beans!
Full of tube, beans and big beautiful smiles!

The transplant team also confirmed that Hugo would be listed once he’d had his echocardiogram. We took him to London on Thursday for that, and he got the all clear, so we’re expecting it to happen any time now. We’re still at the very early stages of this part of his journey, but we’re happy that things are moving forwards.

After two nights at hospital (with yet another day of albumin – that’s nine so far!), we’re now back home again and settling back into yet another new routine. Having so much disruption is frustrating, to say the least; it seems each time we get back into our groove, the rug is whipped out from under our feet again and we’re off for a couple of days in hospital. But Hugo is incredibly adaptable and resilient, and if he can take it all in his stride (minus a couple of off days, which he’s more than entitled to!) then so can we. Personally, I think he quite enjoys all of the attention from the nurses when he’s in there – he’s already a massive flirt, charming the pants off them. We’re going to have to watch that when he’s older!

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2 thoughts on “News, a feeding tube and a Very Bad Day

  1. HI Polly, Ross & Hugo

    I have just read your blog and am in awe of your courage and strength at this very difficult time in your lives. Your little man certainly sounds like a real fighter and an absolute delight, it really is amazing how resilient babies are and how much they give to you to boost your resolve and morale when you need it most.

    Ray and I are thinking of the three of you with warmth and love, good luck with everything.

    Ray & Margaret Bourdet (at number 5) xxx

    Like

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