Staying in hospital: a guide for parents by parents
This guide to staying in hospital with your child has kindly been written by the parent of one of our patients.
Whether you knew your child’s condition before birth or not, nothing prepares you for what will happen when you arrive in hospital. Seeing your child poorly and having no control over what is happening completely throws everyone. The first thing to remember is that you are not alone - there are lots of parents and carers on the ward going through exactly the same thing and the staff are amazing in supporting you through this time.
Following our long stay on Ocean ward, I've listed some tips to help you stay positive and get you through your time in hospital:
Supporting your child
Your child will recover when they are ready, and there are no timescales or guarantees for how long things will take. Focus on one day at a time and when times are really hard, look at breaking the day in half - a bad morning can be followed by a good afternoon. When your child is really poorly, there will be little glimmers of hope. Hang on to these moments as they will get you through.
Learn about your child's condition
Knowledge is important, so use the time you have in hospital to learn as much as you can. When your child is discharged, you'll need this knowledge to explain the condition to anyone involved in your child’s care. If your child is very young, it’s particularly important to become an expert, as you are your child’s voice.
Take lots of pictures
These will help you to see how far your child has come on their journey.
Writing things down will help you to process what you're being told, and you can then go away, read what you've written and come back with any questions you have. Writing questions down helps too, as you’ll forget about them and can get confused when speaking to doctors. The doctors will answer your queries and are really good at helping you to understand.
Wear comfy clothes and shoes
You'll be walking miles around the hospital and spending a lot of time sitting around.
Bring a distraction
A book, tablet or laptop can help pass the time as well as taking your mind off the situation. There's WiFi on the ward and at Ronald McDonald House, so you can download and watch your favourite programmes.
Buy a mug
If you're in hospital for a long time, polystyrene cups will really lose their appeal!
Have some time out
It's important to leave the ward - this is vital for your sanity. You child could not be in safer hands here. The staff on Ocean ward are amazing and if there's any change in your child’s condition, they will call you. Go for a walk to start with and then maybe to Shirley to the shops. If you enjoy exercise, there’s a really good no-contract gym nearby that you can join. These moments are important as you need to look after yourself; you need to stay healthy both physically and mentally.
Talk to other parents
Other parents and carers will become your closest friends during your stay as they completely understand what you're going through. Sharing cups of tea, tears and laughter will make your time on the ward feel more like normal life.
Spend time with your other children
If you have other children, it's hard to be away from them. Planning for when they visit helps to pass the time and gives you something to look forward to. Plan to cook a meal or do something that makes them feel special when they arrive. Taking time out to spend with your other children is important; they need you just as much as your poorly child does.
If family and friends want to visit, let them - even if you're having a bad day. Seeing people from your usual life will cheer you up and help to break up the week.
If you get the opportunity to visit home, take it, especially if you have other children. It will feel strange the first time but it’s important to stay in touch with ‘normal’ if you can. See if you can get a friend or relative to be at the hospital whilst you are away.
Staying at Ronald McDonald House
Make your room yours
If your child is in hospital for a long time, it’s good at the end of the day to go back to your room and try to zone out. A TV and DVD player help with this. If you know someone with a small TV they will lend you, ask! It’s great that there are TVs in the communal areas at Ronald, but sometimes it’s nice to just shut yourself away in your room, which will start to feel like a second home after a while. Get someone to bring a few of your belongings and maybe a framed photo. Ronald is a lovely place to stay and you can make your room feel more like your home with just a few of your things. Little things like these make such a difference.
Buying food in the hospital can be expensive, but there are a range of supermarkets nearby. The rooms at Ronald have cupboards, fridges and freezers, meaning you can stock up and save money.