Preparing For Home
There is nothing you want more than to bring your little one home, but have you set the necessary and often complex preparations in motion? If your child is going to have ongoing medical needs then it is more than likely your home will become a rehab centre, so it’s important to be organised.
Here are some tips to make the transition from hospital to home go more smoothly.
1. The multi-disciplinary meeting
All multi-disciplinary meetings are important but the final one before returning home is crucial.
Multi-disciplinary teams are made up of several different health and care professionals who have different areas of expertise. They will discuss with you how best they can work together to support your child and agree a personalised care and support plan. It’s a good opportunity to meet the community nurses and any other healthcare professionals you may rely on when you first go home with your child. They will answer all the questions you have and will advise you about how to set up equipment and organise necessary stocks of everything you need to care for your child at home.
You need the meeting to be well attended so be aware you may be the one who has to chase people up to come along.
You will need to arrange equipment to be delivered to your home before your child leaves hospital. Make sure you include a request for portable machines, e.g. SATs monitors or suction devices, as well as bags to carry them in. It might take some time before you are able to or feel confident enough to go out and about but when you are ready, you don't want to then have to wait for a delivery of suitable equipment to arrive first.
3. Stocks of consumables
You need to go home from hospital with sufficient consumables to meet your child’s short term requirements. You must then arrange straight away for an ongoing and recurring supply of the necessary consumables. Arrangements will vary depending on how it works in your local authority so ask your community nurses for information about the ordering system.
You will need to keep track of your supplies. It may help to do a regular stock take to avoid running out of potentially life-saving equipment. See how you get on over the first couple of months as you may need to adjust the amount of stock you order. Don’t be surprised however to find yourself having to regularly reduce then increase some amounts of consumables; all kinds of factors like fluctuations in your child’s health and even changes in season will affect what you need.
You may need to order some items through your care package and others will have to come via your GP. Call or go in and speak to the receptionists at your GP. Find out how their ordering system works and how long it will take to receive your prescription once you have requested it. Can prescriptions and stock orders be sent electronically to the pharmacy? Ask if you can put things on repeat: every time you collect a prescription or stock order, ask them to tick the items you need for the following month so it will be ready for you then. This makes life much easier – it saves time, it’s something off your to-do list and it reduces the total number of trips you need to make.
It is worth making good connections with your GP’s receptionists and local pharmacy staff. If possible, take your child with you so they can put a face to the name or show them a picture of your child. People like people and are even more likely to help and be flexible if they know who you are and what your situation is.
4. Hygiene in the home
It is important for you to have a clean house for your child’s arrival home. Do it while your child is still in the unit or ward, ask a family member or friend for help or pay a cleaner to do a deep clean of your house.
Ongoing cleanliness and avoiding illnesses
When your child is unwell it is important to keep a clean environment to reduce the risk of additional illnesses.
A common cold or virus may not seem like a big deal but it can make your life a lot harder when your child gets sick. In some rare circumstances it can be life threatening for your child. Having said all this, becoming completely fixated on avoiding illnesses like colds and viruses will take its toll so you need to strike a balance. The truth is you cannot prevent yourself or your child from ever getting ill. It only takes you to touch a door handle and you might catch a cold. Sometimes you have to let go of the control and accept illness is part of life. It is about managing the known risks.
It is ok to ask people to take off their shoes or wash their hands when they enter the house. In fact, it’s really important that they wash their hands. It’s also OK and important to ask visitors if they and their family are all well. If someone is unwell or suspects they might be coming down with something then rearrange the appointment or meet-up. One mum said she spent last winter in quarantine. It can feel like that sometimes, and this can add to a sense of isolation, but it won’t always be like this.
Your aim should be to sensibly manage situations where you can. Let people know before you meet up that your child is particularly susceptible to illness and the possible consequences for your child if they catch something. It’s very likely people will then be pretty responsible about whether they can or cannot be around you and your child. Remember, the importance may still slip people’s minds so it will be down to you to do a quick reminder like a ‘health text’ before you meet up with people - just until they get used to it.
5. Storage in the house
You may need to clear rooms, swap round furniture or move your child’s room across to a bigger space to enable you to fit in equipment, a special bed for them or a second bed so you can sleep in the same room as them. Consider starting off by clearing kitchen cupboards or your cupboard under the stairs to use as storage and work from there.
You may need units for machines kept in the living room (or wherever you will be spending most time with your child.) If your child is a baby, get a travel cot to put in the living room, preferably with a cot top changing mat. You need to think of your back and posture. At first it might be ok to do everything on the floor but you could start to suffer with back or neck pain from constantly bending over. And of course it’s less hygienic on the floor anyway.
6. Preparing your child’s bedroom
Even though you may need to adapt your child’s space to accommodate medical equipment, it is important for you and your child that their bedroom is a place they love. Try to make it somewhere that is calm for them but also make it a place that reflects their personality and tastes as they become old enough to express them.
Storage boxes and/or units are essential for your child’s room to store stock and to situate medical equipment. Make sure you have things that are at a good height for your back and where things are out of reach of your children if they are mobile and curious!
If you are able to access a care package, it can take weeks or even months to set up so get the ball rolling as soon as possible so you don't have to struggle on your own for too long.
Make sure you have support set up for at least the first couple of weeks. That might include someone doing food shopping and preparation, someone helping with washing your clothes and tidying the house or someone to help look after your other children while you get settled into your new routine.
Although you may have longed and dreamt of this moment - finally being at home with your little one - it can be very daunting at first. Sometimes it is good to have someone to look after you while you are finding your feet with looking after your child.
Apply for your entitlements and benefits while you are still in hospital. Although most of them only apply from when you are home, when you are nearing your discharge, fill in the forms. The process can be a lengthy one. It is sometimes backdated but it is good to have access to extra funding straight away if possible. To find out more click here.
8. Emotional Preparation
You want nothing more than to get your child home but once that happens the responsibility can hit you. Fear might kick in. You could lack belief that you can do this on your own, without the 24/7support of the nurses. You need to accept that you may feel one or all of the above emotions. Prepare yourself mentally by acknowledging that the first few days and weeks and sometimes months are going to be difficult, both practically and emotionally.
But you can do it. Make sure you get the right support and don't be afraid to ask for help. Use the family forum if you need practical or emotional support or advice – there are many people who have gone through similar experiences and want to use their experience to help others cope with their situations.