Hints and tips for the hospital ward

28 October 2020

 

By parents/carers and young people across the UK

Phillipa Uren

In April 2016 my daughter Mia had magnetic growing rods fitted at Alder Hey Children’s Hospital. Before the operation, I couldn’t imagine life without this massive worry hanging over me. I still worry – it’s a natural state for any parent – but the worry has lessened considerably. I’m in awe of Mia and her twin sister Lucy every day.

Tips for preparing

  • Check the resources your hospital can offer you. Ask if they have an information pack or guide to what happens during an operation and after. Check the website for details about your hospital facilities and suggestions of what to pack.
  •  If your child is really anxious, see if you can arrange for your child to see a psychologist. The psychology department at Alder Hey was a great help. We had regular appointments during the run up to the operation and support when attending appointments.
  • You can prepare yourself by contacting other parents whose children have had this operation. These people completely understand your anxieties and worries. They can answer questions you have and tell you things you might not have thought of. SAUK gave me the contact details of parents whose children had had the growth rod operation and I felt so reassured by speaking with these families.
  • Arrange lots of fun things to do as a family in the weeks and days leading up to the operation. It’s a good distraction.
  • Talk to your child about the things you will do with them for the 6 weeks after the operation. Plan lots of treats

 

Tips for the ward

  •  The consultant will give you a rough idea of how many hours the operation will take. Think in advance of something time-consuming to do. We went to a big supermarket to shop for bits.
  •  Mia was hungry soon after waking up. Talk to the nurses on the HDU about good foods to snack on. We got through lots of dried fruit and smoothies. Take labels or a permanent marker to label your food if you plan to store it in the ward’s refrigerator.
  • Check the internet situation on the ward and ask for login details if need be. If you have more than one tablet or electronic device in the family, bring them. Mia liked to have children’s television playing on YouTube on non-stop, so I charged one tablet whilst the other one was playing. Remember you will want something to read or distract yourself with, as well as your child. Download programmes you might want to watch in advance, too.
  • Only cups with lids on them were allowed on our ward. Bring a flask.
  •  Be prepared for discomfort. The nurses have to move your child regularly and it does cause pain, which is really hard to watch. Be encouraging and reassuring, as hard as it can be.
  • Our consultant told us that parents normally experience a high of relief for a couple of days after the operation but that there are often a couple of lower days later on. In our case he was absolutely right and it was good to know that this was normal.
  • Have visitors. Plan this in advance if you live far away from the hospital, and if you have some special visitors, think about when might be best for them to come. Mia’s grandparents travelled over on the fourth day after her operation and it was just what she needed to perk up and get more determined about recovering. She was discharged the next day.
  • Hair washing was a problem. Look at rinse-less shower caps but be aware that they don’t really work if your child has long and/or thick hair.
  • Check with the school and council about home tutoring. The website www.gov.uk/illness-child-education is really useful. I took copies of Mia’s before and after X-rays to school and prepared some information for the teacher to explain to the children in Mia’s class what her operation had involved. Contact SAUK for more advice.

 

Rebecca Richings

In April, 2016, our daughter Izzy, aged 13, had a spinal fusion operation at Norwich. For us parents, the risks involved were terrifying, but Izzy was incredibly brave and didn’t appear to worry until they wheeled her off to theatre, when she found she was shaking involuntarily! We were in hospital for a week, eventually moving from the children’s high dependency unit (HDU) to a general ward. The care at the hospital could not have been better. The surgeons, nursing staff, play specialists, and physiotherapists were all incredibly supportive. Below are some thoughts and tips…

After the operation, the amount of tubes was quite alarming, but it was reassuring to remember that each one had a purpose, and it was good to watch Izzy’s progress as one by one her tubes were removed. Try not to be too overwhelmed by the amount of tubes and the difficult emotions, especially when in the HDU. Don’t be scared to ask the nurses for reassurance with this. I felt quite wobbly in the quiet hours while Izzy was sleeping. I needed to know it was all going to plan and the nurses were amazing.

In our case, Izzy sat for the first time on the third day after her operation and she took a few steps on the fifth. Izzy scared herself by collapsing on two occasions, but it’s good to know that this is not unusual. The surgery is major and Izzy was still not eating very much by the time she started walking around.

  • Call on other members of your family so that you can go home and relax once in a while – I liked to go home for baths.
  • On a more practical note, take shirts with buttons down the front rather than t-shirts. That way your child doesn’t have to raise the arms to change clothes, which can be painful.

 

Lizzy Johnson

  • If your child is a bit older they might be on an adult ward. Be prepared if this is the case as visiting times can be more restricted. It made it hard for us.
  • You will be shocked. Nothing can prepare you for your child laid in HDU with wires and drips everywhere.
  • Try to keep positive for your child. When our daughter had her morphine button, every time she pressed it for relief we told her she was five minutes closer to recovery. We kept her thoughts moving forwards.
  • Tell your friends when you’ll be in. Messages of support helped enormously, especially because our visiting times were more restricted.
  • As a parent you will feel helpless, and often your child will take out their pain on you. Take regular breaks and do nice things during those breaks. We used to walk around the town centre and find nice places to eat.
  • Pick up food from town for your child. Some nice restaurants will do a takeaway for you if you explain!

 

Maggie Christie

Parents: take warm clothing! The air conditioning was freezing.

Before you go in, make sure your child can swallow tablets. Mine couldn’t and it made taking painkillers so much more difficult. The pharmacist in the hospital suggested practising with little mints.

For my daughter, Hannah, it was really important to have familiar things in an unfamiliar place. Blankets & teddies were important.

For Hannah, music was really important for the psychological challenges of recovery. Load music on to a phone or device in advance.

Lisa Mortimore

As a parent I would say do anything that will distract your child. Bring little treats and bits to eat. My daughter was not keen on the hospital food!

When at home, keep your child moving. It really helps with the pain and recovery.

Try to stay calm and positive around your child. It helps them also to stay positive and calm and you end up feeding off one other! It’s good to focus on long-term things and to have something exciting planned for when they’re recovered.

 

Jennifer Kate Turner

  • Hospital televisions are no good in my experience! Take multiple tablets and phones and plenty of sets of headphones.
  • Take your own teabags, a flask, your preferred milk, sugar, and a teaspoon.
  • Take earplugs for yourself as well as your child.
  • Try a onesie for travelling home in. They’re easy to climb into and they’re very soft and comfy.
  • One good way to keep yourself busy whilst your child is having the operation is to clean your house from top to bottom! If your visiting times are restricted or if you would rather be away from the ward for various reasons, get the hospital to call you an hour or so before your child or friend will be out of theatre. Keep your phone fully charged and off silent for that call!
  • Go to a bookshop or shop online for a small reading lamp to attach to the top of your book. There will be times when you want to distract yourself on the ward during the night.

 

Poppy Johnson

I made sure I was ready with some serious pampering: legs waxed, a luxurious Lush-filled bath and freshly washed French-plaited hair. This meant that I could still feel a little bit glam on the ward and I felt a lot more comfortable and clean while I was restricted to bed baths!

Being in hospital on your own before visiting hours can get really lonely. I was that bit older (university age) when I had my operation and my parents were not able to be there quite as often. I made sure I had a few home comforts to keep me feeling cosy, particularly overnight. I obviously had my phone but be prepared to buy some more data if you don’t have unlimited data - hospitals are not wifi friendly! Then I had my Kristoff from Frozen cuddly toy - yes, I am 22 - and some of my favourite pyjamas for when I was out of the infamously unfashionable backless gown.

Immediately after my operation, I didn’t have the best relationship with food. Everything turned my stomach and I mainly drank water and forced down a bit of toast every now and then. However, once I’d gained a bit of an appetite, hospital food still wasn’t pushing my buttons. Thankfully, my hospital was in the city centre and my family were able to bring me delicious pack-ups from home or any takeaway treats I wanted from the high street. This meant that if there was any specific food I fancied I was able to get it pretty quickly. The staff didn’t seem to mind as they just wanted me to eat something!

 

Natalia Torres

  • Bring the best earplugs you can find. Nights can be very loud but the quality of your sleep really matters for your recovery.
  • Bring an eye mask if you can’t sleep with lights on.
  • Make friends with others on the ward. Recovery is hard in every aspect and it’s really good to share that experience with others who understand it.
  • Bring nighties rather than tracksuit bottoms or pyjama bottoms. I bought loads of loose t-shirts and oversized tracksuit bottoms. There was no way I could get them on and my family had to go shopping for me.
  • Remember to thank your nurses. It is their job to care for you, and what a job they do! I sent cards to the supportive team on my ward to thank them for all the things they did for me.

 

Nikolina Viktoriya

  • Prepare in advance some good television and/or films on a laptop or tablet. Remember that music is great to soften the harshness of your clinical surroundings.
  • Do something creative. Colouring books are great. In hospital you will be surrounded by sick people and it’s very easy to overthink things. All distractions, however short, are good to give your mind a break. That way your body can do its thing!
  • Bring pillows to pad out your area and get your visitors to make it as homely as possible!

 

Laura Willisson

  • Prepare to be sleepy. I couldn’t really read so television or films –something to wash over you – can be better.
  • Sitting in a chair was a struggle for me. Having something to do when sitting or someone to talk to really helps! I used, at home, to get myself to practise sitting by playing on a games console whilst I sat.

 

Jayney Millward

I don’t know if it’s the same for everyone but someone told me before my operation that on around the third day after the operation you can get really low and the pain can get worse. I’m so grateful they told me this or I’d have thought something was wrong. I felt great after surgery but once your pain medication decreases you can feel a bit worse again. It’s not nice but it will pass in a few days so try not to panic.

  • As well as loose clothes pack shoes or slippers that slip on easily but are also sturdy for when you’re unsteady on your feet.
  • Take pillows and cushions for when you begin to sit on the chairs as well as for your bed. The chairs on the ward were not comfortable.

 

Aasma Zuhair

  • Take part if there are activities happening on the ward. I was in Great Ormond Street where this was the case. Group activities help you to make friends and to take your mind off things.
  • When I had my operation I chose to encourage my parents to go home at night. I wanted them to be fresh because it made both them and me happier. I got to know my night nurses really well and they were great. Having said this, you might not want to do this – do what feels right for you and put yourself first!

 

 

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