The parent's guide to surviving hospital

Picture: etsy.com

When your child is in hospital your first concern is always for them, but it's still really important to look after yourself. After all if you're sleep-deprived, half mad and haven't eaten in three days how are you supposed to look after your little one? Babies pick up on tension so easily, and if hospital makes you stir crazy you pass it right onto them. The three week stay we had last November was a lesson to me, and our recent stay clarified things even more. So I thought it would be a good idea to pass on some of the things I've learned, just in case they're useful…

1: When you're taking your child into hospital – even if it's just to check something out – always assume you're staying for the night. I have a semi-packed washbag at home that I can just throw into a holdall at a moment's notice along with a change of top and undies. The bag contains an itty bitty deodorant and shower gel, some cleansing face wipes and dry shampoo (ward showers can be a bit rubbish so if you have long hair, dry shampoo is your friend.)

2: If your stay is longer, choice of Pjs suddenly becomes vitally important. I always sleep in a big baggy T-shirt and leggings. Consultants have a habit of popping to your bedside at 8am when you're still rubbing sleep out of your eyes and reliving the scared-little-boy trauma of the night before. I find it's less awkward to have a conversation with them when you're wearing something that passes as day clothes, rather than bunny pyjamas.

3: That said, don't forget the slippers. Wearing the same shoes 24-7 does weird things to your feet, and nurses frown upon barefoot night wanderings.

4: A torch is quite handy for night-reading. Ward lights out at 9pm, people.

5: Buy fruit and lots of it. Hospital canteens and shops sell gazillions of chocolate bars, a wealth of crisps and a dismal selection of yellowed apples. The last thing you need at a time like this is scurvy.

6: If someone offers to visit you, let them. Don't say 'only if it's not too much trouble' or 'really, we'll probably be busy' After a couple of days of just you, your your partner, a poorly dude and the medical staff, you'll need to hear about the outside world. Try not to cling to their legs sobbing when they have to leave.

7: Hand cream! You will be washing your hands approximately 30 times a day – even more if your sproglet is infectious. Not to mention the alcohol rubs at every ward entrance and in every loo. It's vital to stop the spread of germs, but that doesn't mean you have to get old-lady hands.
Some of you might think this sort of thing is shallow, and of course dry hands aren't the end of the world. But keeping clean and comfortable and not distracted by niggly little things makes you a better hospital-parent and that's important because…

8: Your child's treatment is down to you. You're terrified, disorientated and adrenalin is pumping through your body but despite all this, you have to be ready to reel off your child's medical story in 10 seconds flat.
At one point my little guy was being seen by the paediatric surgeon, the paediatrician (totally different discipline apparently) the gastro team, the dietician, the pain relief team, the pharmacist and the physio team. Each arrived at his bedside wanting a potted history but tailored to their specialism (developmental stuff for the physio, digestive stuff for the gastro team, etc.)* They were all carrying his file, but it's about four inches thick and there's no way they'd been able to absorb all the info they needed.
So it's up to you to keep it concise, factual and make sure they answer all your questions too. You're under more stress than you have ever been in your life but you have to be at the top of your game. No pressure there, then.

9: As for the question of staying occupied, I'm still stumped. Ward life involves long periods of waiting around, often next to a sleeping toddler, and it's hard to find something you can focus on when such a big part of your brain is screaming “EMERGENCY! SOMETHING IS WRONG WITH MY CHILD!” Bring books of the trashiest sort, with no death (unless it's one of those fun murder mysteries where someone frightfully ghastly is poisoned and everyone still dresses for dinner.)
Download things onto iPlayer to watch offline – although you'll probably never make it through a full episode. Make sure you have some non-taxing trivial games on your phone.

10: Keep busy. This is a very hypocritical piece of advice, because I don't follow it. I end up semi-paralysed by worry and unable to achieve anything. I read a few paragraphs. I write half a blog entry, knit a few rows then unpick them because I haven't counted stitches properly.
Because when you're in hospital all normal life is on hold. I suppose the best piece of advice is to realise that, and not to put pressure on yourself to keep all those balls in the air. Just focus on your sickly little one, survive it and remind yourself that this isn't real life. That starts again when your little one is better, and when you can go home.



*A footnote. I just want to say thank you to the amazing team of people that kept my little guy alive and got him well again. I might moan a bit about hospitals in this post, but when it comes down to a choice between decent showers for parents vs huge medical teams dedicated to the welfare of my child, I know which one I'll pick.

Fundo diary part 5: Home

I've discovered something: the threshold of our house is magic. As we crossed over it, LG's face lit up, his shoulders relaxed. The same thing happened to the rest of us (with less squealing) The relief of coming home from hospital – no more obs, no more grubby kitchen mugs or plastic-encased pillowcases. Just a whole private house to ourselves with nobody sticking their head around the door brandishing syringes and rubber gloves.

LG's appetite began to perk up instantly. And although for the first day he was still a little clingy and under the weather, within 24 hours he was bimbling about as usual. Picking things up, chucking things around, charging about like a nutter with his brick trolley and learning new words. (“Flower!” “Banana!”)

Meanwhile I started sorting things. I cleaned the bathroom, I did mountains of laundry but then I decided that wasn't enough and started clearing out my drawers and deep-cleaning the bedroom. I steam-cleaned the basement, vacuumed everything that didn't move. And I realised I'd been putting all this stuff off until “after the operation”. As if everything else in life was on hold until we had got through this.

The best job of all was throwing out the dozens and dozens of oral syringes that had taken over the kitchen. Every night I'd spend ages washing out the seven syringes a day that we used to deliver LG's anti-reflux drugs. Now, if everything goes OK, we won't need them any more.

OK, I told a small fib there. I didn't throw them out – I'm too superstitious for that. Instead they're in a shoebox in our cellar, along with all the leftover drugs that aren't near their use-by date. I hope one day to throw that box away without even opening it. I never want to see them again.

Fundo diary part 4: Hospital blues

Days pass in the isolation room. The things that keep me sane are my man, my Mum and the fact that I can escape for a shower and a quick breakfast to Ronald McDonald House over the road – a luxury we never had last year because it was still under construction.

But these things don't matter to LG. He can't lie in his cot thinking well this sucks, but at least it'll help in the long term. All he knows is that he was feeling fine until we dragged him into hospital, stuck a mask on him and he woke up with a funny knot in his stomach that won't go away.

Every time a nurse or doctor enters the room he goes crazy. Every time we have to change a nappy (which we do, a lot) he sobs inconsolably. He has flashes of his old self – obsessing over cars and seeking out packets of biscuits with a hawk eye – but then he goes tired and listless. And who can blame him, trapped in the isolation room?

Then at the weekend we get the results of his poo test – negative. No bugs lurking in his digestive system. And although the runs continue, his eating picks up (which means even more steaming, noxious nappies, but we don't mind that.) He keeps it down, too.

It isn't until later on that I'm reading the fundoplication leaflet I picked up on the ward and find this note under the heading of possible side effects:

And it didn't occur to anyone to mention this??

Sheesh.

Anyway, after the clear test it's decided that we can go. He's not ill – it's hospital that's making him like this. We've been in exactly one week - the doctors did say it would be a stay of 5-7* days and they were right. We pack as fast as we possibly can.

As we leave the hospital behind, the tension lifts, and LG even has a little babble. Home is where the healing is.

*Please note, I wrote all these fundo diary entries offline in the hospital and it's taken me a few weeks to get them all uploaded - so ignore the dates on the blog as it makes it look like we were in hospital for three weeks!

Fundo Diary part 3: Nappygeddon

One and a half days after the operation...

At 2am this morning I was woken up by what sounded like a water pistol being fired in the little guy's cot. I could hear a liquid substance being sprayed at high speed against some kind of surface and for a moment I wondered what it was.

Then I smelt it.

Then the farty noises started.

Oh.

I spent the rest of the day changing nappies full of watery green slime, requesting clean sheets and getting increasingly worried. “He's probably picked up a bug,” the doctors said, sending a nappy off to be tested by some poor unfortunate lab rat. The nurses moved us into an isolation room, just in case.

When he started vomiting I panicked even more. Should that even be possible now? He was heaving for minutes at a time, his stomach contorting violently and all he brought up was a mouthful of milk and… a small spot of blood.

Worried.

Fundo diary Part 2: Feeling the fear and doing it anyway

They day before we were due to be admitted to hospital I was exhausted. I felt like the air around me had turned to jelly – I could barely see straight and it was an enormous effort just putting one foot in front of the other.

“I think I'm getting your cold,” I told the Man.

Man sniffled and did a little man-flu groan. And I realised that we were both overcome with nerves. With him it had come out as a sore throat and sniffly cold, with me it was like being hit over the head. It's happened to me before – once on the first day of a new and especially scary job, I nearly fell asleep at my desk.

My friend, who's a counsellor in training says my body is releasing cortisol, the “stress hormone” which seems to be doping me up to the eyeballs. I decided to go clothes shopping – it seemed like a nice, shallow activity to pass the time, but I came over all dizzy in the Zara changing rooms and thought I was going to faint.

Of course LG is blissfully unaware of this, and is charging around the house full of energy. You can see him learning, growing and developing almost by the second. New words are exploding into his brain. “Shoes! Car! Bus! Apple!” He's reaching, grabbing, soaking up everything he can.

A few days before I'd taken him to the beach, removed his shoes and watched him get to know the ebb and flow of the sea. Then I grabbed him and threw him up in the air. His giggling little face was framed by perfect blue sky and my brain took a little happy snapshot. Then the voice of doom piped up inside and said: what if everything changes after Monday? I shrugged it off, and shoved the thought to the back of my brain, but that sort of thing sticks around. Which is why you end up having funny turns in mid-price fashion shops. Switching off is easier said than done.

Operation day: 12pm
LG has been down in surgery for three hours now. I'm sure they have decided to go open rather than keyhole and I can't help thinking: why on earth are we doing this? He's happy, he's growing well, he's discovering new things about the world. We were told this morning that the cells in his oesophagus which might have been pre-cancerous actually aren't. Our boy is having his stomach sliced open and we don't even know if it's going to do any good.

Meanwhile we wait upstairs on the ward. The baby in the bed opposite has a machine which emits a squeaky beep, and it has been doing so for over an hour. There is no natural light, foul nappy smells are emitting from the cubicle next door and there are only stiff, plasticky chairs to sit on. Somewhere a poor kid is groaning, and an adult is explaining over and over, with mounting stress, that "you can't eat yet because you have a sore tummy." All this wears down a parent's nerves. We're crammed together like wobbling water balloons full of fear and after a while one of us will burst.

In the future I will write about the good things - the wonderful staff, the surgeons' skill, the kindness of the other parents and the wondrous fact that this is all paid for by the NHS. But that's not how I feel now. Now I just want my little dude back so we can start facing up to the new normal and find out whether we're doing the right thing or not...

Operation day: 9pm
The wait became unbearable about half an hour after I finished that last entry. The groans-and-beeping rubbed my nerves paper-thin. Then I read some random Facebook appeal about a missing boy and the sight of his little smiling face on the posters turned me into a blubbering mess. I fled to the canteen.

I imagined all sorts of things the surgeons might be doing – fighting to revive him, repairing some disaster, or discovering a new dark mass in his abdominal cavity. Eventually the phone rang – my wonderful man who had stayed by the bedside had spoken with the surgeons. Everything was fine – they had done the surgery laparoscopically and he was in recovery. It had just taken a little longer because of scar tissue from his original surgery 19 months ago.

And there he was, in recovery and too weak to even cry. His temperature was high, his eyes puffy and his little hands shaking a little from the morphine. Every few breaths he gave out a weak little sob. But the incisions were tiny – one less thing to worry about.

Now all we have to worry about is how this will change his eating. And that's why I'm still not sure if we've done the right thing. We've taken a toddler with improving reflux and a healthy appetite and deliberately set his eating back several months. We don't even know if it will improve his oesphageal motility. Did we have any right to mess with his recovery?

The decision is made, the stitches are set.

Now it's nearly 10pm, and he is sleeping. Hoping tomorrow is the start of something new and exciting. Whatever it is, we'll deal with it.

The Vom Diaries

"We need to keep track of his eating and vomiting" says the Man. "Something simple. Something with... stickers!"

I thought it was a terrible idea. How could something as complex as a food diary be kept just with stickers? But we've tried doing it in a notebook before and it's impossible to keep on top of. Besides, the Man was pretty convinced and he bought a cheapie calendar online and some teacher's stickers.

And you know what - I have to say that he was right. Tracking LG's food was well-nigh impossible, but the vom diary really helped. The colour code was simple - yellow for a good day, green for vomit, red for vomit with blood. I changed the smiley faces to frowning ones for the vom-stickers, as it seemed more appropriate, and when I ran out of yellow smileys I switched to stars. Overnight was recorded on the left hand side, daytime on the right.

It meant that when we went to hospital I could take this along and give a clear, simple breakdown of when the blood had occurred and where. I didn't have to rely on my cloudy overwrought memory and the consultants could see if there was some kind of pattern forming. I'm fast learning that the clearer, more concise information you can give to the doctors, the better and speedier the treatment.

So this might seem like a bit of a geeky saddo post but it's actually a really useful tip if you're in the same situation as us. Start your own vom diary today!

Fundo diary part 1: So what is a fundoplication and why am I so worried about it?

The picture makes it look like a little scarf has been wound around the top of a stomach, and I guess that's as good a way as any to explain it. The NHS leaflet we picked up on the ward sums it up a little more technically:

The operation involves using the top part of the stomach, known as the fundus. This is wrapped around the bottom part of the oesophagus to tighten the junction between the oesophagus and the stomach. As your child eats and drinks the pressure in this part of the stomach increases. This causes the junction between the stomach and and the oesophagus to close off, preventing your child from being sick.

Consultants consider this a pretty simple procedure which is usually done keyhole – although there is a chance that the position of LG's stomach will force them to make an open incision.

And why am I worried? Apart from the whole primeval terror of a mother signing a permission slip for someone to cut a hole in her son's body? OK, it's mainly that but also the knowledge that any surgery involves a risk and it's not always guaranteed to work. Could we be making things worse?

And when we asked one of our doctors how a fundoplication works he said: “Well, nobody's really sure...”

I was grateful for his honesty but forgive me if I don't find that completely reassuring!

So far my little guy's reflux has been unpredictable and completely off the scale. Why should I believe an operation like this could solve everything?