Tips for parents coping in hospital with child

[Butterflies27]

My dd 3 years has been in hospital for a week we are likely to be in for quite a while. We are being allowed home leave this weekend.

Can any parents that have been in hospital long term give any tips/helpful advice with coping with this. Foods to have, at present I am snacking most of the day and then have a pasta salad for tea (currently buying from the shops below but not sustainable long term) I’ve noticed there is only a microwave in the parent room.

Cleaning advice, things to avoid. Any tips would be very welcome.

When you go back in, can you take some things like brioche and jam or something? Or porridge pots? Oatcakes or crackers and a Primula tube (if those are ok out of the fridge)? Tubs of rice pudding or custard are long life. Does another adult visit each day? Could they replenish ice packs in a small cool bag so you could have some yogurt, cheese, etc?

Hope your daughter is improving soon, have been following your other thread.

I’d ask family to help cook some dinners you can heat up. My DD was in hospital after being born so I wasn’t allowed to stay but on the full days I spent with her I was encouraged to take a walk outside at least once just to give myself a break. I don’t know if you can do that but if you can I’d really recommend it, or just going to get a coffee and sitting for a while.
Also have things to pass the time; a little puzzle book kept me sane when my DD was asleep.

It's so hard to look after yourself in this situation. I feel for you.
I did it for 6 nights only and was broken at the end through lack of sleep, crap food choices and stress.

Can you take turns with another adult ?

I went in with dc as emergency so had virtually no home stuff for me but the best thing I got from the shop was ear plugs and ear phones. Helped with noisy wards at night. Reading / tablet / getting outside for fresh air once a day (didn't do this and felt like a mole when we discharged)
Wearing comfy clothes and getting a shower daily on the ward helped me hugely.

When I could get to the shop I went for fruit and soup which was easily microwaved. Occasional hot meal in restaurant when able. Lucky for me there was an decent shop onsite.

Other thing was having a chat with hospital volunteers. There was a lovely couple who came round daily and they saved my sanity as they were so kind to me.

Probably all a bit obvious. Wishing you all the best OP.

Oh and podcast to listen to a night on the noisier moments where sleep isn't possible.

Are you in hospital accomodation (Sick Children's Trust house/Ronald McDonald house etc)? Does the hospital have anything like that?

I eat a lot of porridge pots (that you just put boiling water into) and have a refillable water bottle.

Baby wipes etc for a quick clean if you can't get to a shower etc

I'm sorry I have no advice but couldn't read and run.

I don't know your situation but I wish you the very very best and send you all the luck in the world that everything will be okay xxx

I don’t know the back story but sorry for your DD and hoping she’s doing ok and not in any discomfort.

I’ve had quite a few long stays with DS2 and things that helped - my own pillow, decent earplugs (I would always hear him it just blocked out all the other noise), dry shampoo and my own towels for showering. I used to get DH to bring me in dinner that could just be reheated in the microwave and easy to eat cereal bars and fruits to snack on. Also he downloaded some good TV series for me to watch on an iPad with headphones.

Also try to get outside if possible while people are visiting and can be with your DD. 20 minutes break and fresh air really helped me to relax and give a boost of energy!

Who do you have that you can rely on to help? Those people saying just ring/text me if you need anything - take them up on it, be it food or to come in and relieve you for half an hour to wash, stretch your legs or go to the canteen.

Also a couple of decent large flasks for hot drinks/meals. Plenty of baby wipes as even though we were lucky enough that our ward did have a shower for parents to use I found that it was always in use (it had the toilet in there too) or I couldn’t as I had DS2 lying on me but hooked up to machines so was ‘trapped’.

Ah so sorry you’re in this situation - really wishing you and your DD all the best xx

I've been in and out of hospital a lot with my DC, mostly short stays but had a couple longer than yours so far as well. Your own pillow is a must and I found bringing a pillowcase and blanket from home for the DC in hospital helped them sleep better at night and didn't take up loads of space. I had microwave meals for my longest stay and just bought sandwiches/snacks from the hospital shop for the shorter ones. Can your dd get out of bed? If you have a buggy (our children's ward has a few to borrow if not) then a wander down the corridors and/or in the grounds will be good for both of you. A biggish handbag is good for carrying around your valuables (I usually bring things like my tablet, DVD player as well as my purse and phone.

Ask if and when you can get off the ward with your dc - 30 mins of fresh air feels amazing and so healing. Leave your mobile no with your nurse so they can call you if they need you. If your child isn’t allowed out then then go yourself when they are sleeping or you can leave with a nursing student. Try not to leave your dc alone - Do a rota with as many adults as you can enlist to help. A family friend is better than leaving them alone. Nursing staff are too busy to properly watch your child if there’s no one there.
Write down questions for ward round and always be there at those times so you can speak to the dr
Ask your nurse to call you by your name not Mum (ie tell them your name when they come to say hi at the start of their shift)
Learn as much as the lingo and procedure as possible so you know what’s going on and for example may be allowed to do the suctioning or give the medicine.
Learn how to silence the bloody Sats monitor and what the numbers and trace means
Have a shower first thing at 630 before it gets busy and before nursing handover so they aren’t super busy and can watch your child (or even better if child still asleep)
Bring in decaf tea bags
Have a dirty laundry bag and when you swap with the other people get in the habit of taking it home for washing and whoever comes in brings new clean stuff
Ask if the lights are too bright/too dark they can’t fix it if they don’t know it’s a problem
Ask the ward about discounted car parking tickets or lunch vouchers
Flip flops or slippers for you - no bare feet as I’ve picked up loads of fungal infections from ward bathrooms!

And yes lots of DVDs and a mini DVD player if you can afford it

Sorry to hear your DD is poorly. Tinned soup is easy the big soups are nice and filling maybe things like tinned chilli or currys with micro rice, mug shot pasta things, porridge pots. Rice cakes with fruit on top.

Anything you can just add boiling water to is a winner. Porridge pots, instant pasta or soups (microwave these?)

Yy to the posters who have said get off the ward for some fresh air each day, especially if DC is well enough to come with you. (I think I remember it is an eating disorder your DD has?) so if not wired up, pop in a buggy and get some fresh air and actual daylight. Our wards sometimes had outdoor play areas on balconies we could access if not allowed off.

Books for you, or magazines if you haven’t got the head space to get stuck into a novel.

Notebook and pen to write down any questions which occur to you between rounds, or medication times etc.

Showers, clean clothes. When family came into visit, I learnt not to stay and chat but to wash and dress first, then chat!

Thank you so much for the suggestions. I have added soup and will get some porridge pots, and bring the tea bags in. Have downloaded some bits to my phone to keep me sane(ish) in the evenings. Will take the earphones and ear plugs too.
I am sleeping on a pull out bed on the ward next to dd’s bed. Dh is working so I’m in 24 7, he comes in for a few hours in the evenings.
Will take the pushchair in, dd is on a monitor 4 hours a day so will try to get out a bit more for fresh air.
It’s so cold on the wards but so stuffy with all the coughing and sneezing. Worst part is all the germs that everyone comes in with.

They usually have packets of antiseptic wipes on the wards - ask if you can’t see them. They are universal ones for cleaning. I used to incorporate wiping over our bed spaces into my daily routine - yes the cleaners/nurses are supposed to do but they don’t get much time. Made me feel better about germs even if it can’t stop the airborne ones! Use the hand rub religiously!

Really hope you DD is making progress and you are home soon.

I was in hospital with my 4 year old DD for 7 months (continuous) who went through chemo and a bone marrow transplant, so can hear and understand where you are coming from.

As for meals, get family or friends to prepare home cooked foods. Buy from eBay sectioned disposable containers. Make up meals with your protein, carbs, veg etc and freeze them. There is also a meal rota webpage that ask friends and school parents to help out: www.takethemameal.com

Put frozen meals in a zipped insulated shopper bag with ice packs and you can get a good 2-3 days meals in there - they will defrost naturally, but will last several days.

Snacks, keep healthy as possible as the weight creeps on slowly plus lack of exercise doesn't help. You can now buy pasta pots, soup pots and porridge pots - these are lifesavers. Also get some disposable cutlery as when you go to need some you can bet it will all of vanished.

Drinks - tea, coffee, cappuccino sachets, low cal drinks - preferably screw too lids as you'll never get to drink a full one..!!

As for showing, my DD was in isolation therefore we had our own bathroom, but you can buy baby wipes, body wipes and even home bargains sold towel wipes which were massive...

I hope this has helped. Happy to answer anymore questions.

Hi -we had nearly 6 months on a child oncology ward in 2016. Meals cooked by family and friends and then heated up in the microwave were an absolute godsend and made life loads easier and healthier. I also ensured I showered and dressed every day (play staff looked after my baby son for 10 minutes). This simple task made me feel more human. I downloaded loads of books onto my e reader and also had some adult colouring books. I made sure I drank loads of water (really drying and hot atmosphere on the ward) and used lots of hand cream as the constant antibacterial gel is so drying. With regards cleaning the cot/bed bay I just used the azo wipes that they had in the hospital store room. We brought in my son’s favourite toys and blankets to make it feel more like home and bought a portable DVD player to keep him entertained.
Sending lots of best wishes.

I always had certain items in my hospital bag:
DAB radio (or radio app on phone)
Purse (seems obvious but easily forgotten when you are stressed)
Chargers
Kindle/book
As well as basic toiletries I had 'luxuries'. Proper moisturizer, face wash, luxe lip balm
Make up if you normally wear it. Getting my face on helped me get ready for the day.
Lounge wear and a 'coatigan'. I found trackie type clothes that didn't make me feel scruffy helped. I was comfortable but felt presentable. Coatigans are great because you can sleep/nap in them. They double as a dressing gown.
Pashmina type scarf. Has lots of uses. One is to wrap round you neck and face when you can't cope with the noise of the ward
Food was a big issue. One that still makes me anxious when I think about it. Try and eat as much fruit type snacks as you can. Hospitals tend to be about cake, sugar and stodge. That is fine short term but can really impact on how you feel after a while.
Baby wipes will always be useful.
Small rough towel for drying. Sounds silly but I found it woke me up after a shower. Got me going for the day. Its so easy to sink into overheated lethargy in hospital.
Do try and get out for a walk once a day. I know its hard.

Good luck

Just seen this, spent 15 months in hospital with DS, so long I became institutionalised! However I found having a single room really helped, I could snivel and snot in private. The luckiest thing was making friends with the staff (I was over 100 miles from home so had few visitors), they were marvellous taking me out in the evenings, bringing me in treats etc.
I am an avid reader so all unread books came in and my radio. It is an awful time but you will survive and you will laugh about it one day. Good luck to you both.