No one ever plans to stay on a children’s ward in hospital. No one thinks “hmm, you know what? Scrap the trip to Florida, let’s stay local and spend time on a kids ward.”
Even if you’re in for a planned procedure, knowing what to take and the best way to get by is impossible unless you’ve been in the situation before.
Anyone could get by for a couple of days, but a couple of weeks? Months? That takes some getting used to.
Here’s my advice (based on my experience of a very good children’s hospital):
Eating and drinking
It doesn’t matter where you’re staying, when you’re away from home it’s hard to eat right, let alone drink enough water.
To stay hydrated, bring and use a reusable water bottle and keep it topped up. You’ll likely spend a lot of time sat in the same place – make sure you drink. The air on the ward isn’t fresh, it doesn’t take long before it starts to feel groggy. Stay fresh by keeping your water intake high. Just note where the nearest parent toilets are – they might not be on the ward (often patients only).
Eating well is pretty impossible unless you meticulously plan in advance or have someone doing this for you. You’ll want high energy, quick bites, that you can pick up or put down at a moments notice. I had more cereal bars than a Sainsburys supermarket, and whilst I know these aren’t particularly healthy, if you buy the fruit variety, they’ll often tie you over with a piece of fruit until you can get something better in you.
If someone offers to cook and bring it to you – ACCEPT!!! There’s only so much convenience food one can take/afford. We had a Pret downstairs which is delicious but when you’re spending over £30 on breakfast a week, it soon starts to lose its appeal. Many nights I skipped dinner, or had toast (for the third time that day) – not good.
FYI – when you do order a takeaway they often come 9000 times quicker then the estimated delivery time (aka they make your order first) as they see it’s to be delivered to a children’s hospital. So kind! Just make sure the instructions are clear that they need to ring you on arrival, and they may need to wait a few minutes longer than they’re used to for you to get to them. There’s nothing more painful than seeing your late night, desperately needed, Deliveroo guy cycle off as you’re legging it down four flights of stairs.
It goes without saying that comfort comes first. It’s not the place to test run the new pair of jeans you’re hoping will soften after a couple washes.
Differentiating between day and night time is important for my sanity. So comfort, for me, didn’t mean pjs. But it’s totally okay if that’s what is best for you. This might sound mad, but even the day after I Clara was born I was up and out of my pjs in the morning. A HDU (High Dependency Unit) nurse wrongly assumed I’d been discharged because I was dressed (ie not in a dressing gown) downstairs in the special care unit. The same rule applies to Clara now – sleepsuits are for night time. It’s the first sign the bedtime routine is starting.
Footwear is important. It can get really hot on the wards so a pair of comfy sandals could be your default choice if it isn’t the depths of winter. I’ve tried trainers, boots, slippers, and pumps, but well soled leather sandals have done my feet best. Even trainers started to cramp my feet after I’d been standing in them for a few months.
Assuming you’re able to sleep on the ward, don’t forget pyjamas. I proudly wore my matching tartan set that was loose, comfortable, and modest. Nobody judges you on your pyjama choice, just be prepared for hot and cool nights.
I’m very lucky to have been able to stay next to Clara’s cot. I slept on a day bed that’s surprisingly comfortable once I’ve adjusted (read: just always too tired to care).
There’ll be noises: pumps alarming, machines beeping, phones ringing, people talking, children crying, and, more often than not, someone snoring.
Luckily I rarely woke for noises that didn’t relate to Clara. I’d tuned into her only. But if you’re new to the experience, you’ll likely struggle to filter the sounds. What this means however, is every movement Clara made it woke me up. If I was worried she’d been sick I’d rub my fingers along the sheet either side of her face to check it’s dry and I’d check her shoulders for stain. Call it mad, but it’s paranoia driven by experience.
If you have another family member who’s able to stay occasionally to allow you to go home for a full nights uninterrupted sleep then consider it. The day bed we had was way too short for my husband so he wasn’t a good candidate for staying: it made for a difficult next day if he’d had no sleep at all. Whereas it became habit for me so I stayed almost every night. On rare occasions I went gone home, it was only when I knew a favourite nurse of ours was on and the ward was peaceful. (FYI – you NEVER say the Q word on the ward, it jinxes it!)
Call it extravagant, but the game changer for me was a light single duvet provided by my mother in law. A few months with hospital blankets and a blanket from home vs a single duvet now was the difference between an ok and a good nights sleep. If you’re really feeling fancy, bring in a pillow or at least a pillow case from home.
Some UK hospitals have incredible facilities for parents provided by Ronald McDonald House Charity, completely free of charge. This includes private accommodation with rooms sleeping 1-2 people (off of the ward) and often an ensuite, a communal living room and kitchen, and access to a fridge. You can find out more about Ronald McDonald House Charities here. You can read about our fundraising for the charity here.
When you are settled on the ward, ask about your showering options. Some wards may have a family shower on the same floor, some may allow you access to Ronald McDonald facilities even if you aren’t staying there, and some may have facilities in the general hospital you can use to wash. Be sure to check access times and any other restrictions.
When I was able to use Ronald McDonald showering facilities I found it easier to use the hospital towels provided as they were bulk washed and dried daily. Trying to find somewhere to hang dry your damp towel on the ward is impossible.
It was always important to me I understood what decisions were being made about Clara, so I could learn what worked for her and what didn’t. I wanted to help – in the early days of Intensive Care it was the only thing I could do to not feel completely helpless.
It started with feeding and nappy changing, not easy through portholes of an incubator. It then progressed until I was aspirating her NG tube (using a syringe to extract stomach contents via the tube down her nose), testing the PH level, checking it was okay to then go ahead and put a couple millimitres of milk back down. My responsibilities increased as she got older, and needed other care.
If you take onboard any of my advice, let it be this. Smile at people. Say hello. Ask about their day.
You will be surrounded by people in a similar situation to you. Some will have been there before, some may just have arrived. Either way, you are here, in an environment you’ve all ended up in but nobody chose to be in.
You can make what you want of living on a children’s ward. You can sit there, isolated, head down counting the minutes, days, weeks, towards home. Or, you can offer a smile to someone, a reassuring word, even just a hello. You never know – it might be all they needed that day to remind them that their sun will shine again. If you’re able to be mobile with your child, even if they’re attached to a pump stand, walk around – even if it’s just to see the view out of a different window.
We have been lucky enough to make some life friends on our journey here on the children’s ward. I’ve fallen in love with a homemade Japanese beef curry (it tasted like Steak and Ale pie?!) that an amazing family brought in for us after they’d been discharged. I’ve also fallen in love with a little girl called Wrenn who will be Clara’s friend (and her mummy mine!) forever. There’s nothing like a tough experience to bring people together.
Don’t forget the nurses. You would be horrified if you heard some of the abuse they’re given. They work long busy shifts, on their feet all day/night – their no.1 priority is your child’s wellbeing. Remember to thank them. Remember they’re human too – happy and sad emotions don’t bypass them. They’re there with you every step of the way. I’ve had nurses cry with me, hug me, reassure me it’ll get better. When Clara had her make-it-or-break-it operation in January, Ali was incredible. She knew the weight of the world was on our shoulders – she felt it on hers too. She highly deserved the coffee I’d buy her most mornings to get her through the start of a busy shift.
There’s also nothing quite like a shared Pizza order between you and other parents, or you and the nurses on shift. I’ve truly made some life friends this way. After all, who doesn’t bond over normality in the strangest of circumstances?