HOSPITAL VISITS

What do I take to hospital for my child with CDG?

Unfortunately, CDG patients are sometimes admitted to hospital when they are poorly. One of our Mums has written this list of what you may wish to take with you to help us get organised in advance for what can be a very stressful time.

• All prescribed medication. A labelled, insulated bag works with (like you would use for a lunch bag) and protects the medication in bottles. In a document file/plastic folder keep copies of current clinic letters and medicine schedule, showing the time medicine needs to be taken, medicine name and strength, and the dosage to hand over to the ward nurse.
• Include details of any care plan that you have in place. Speak to your GP about creating a care plan if you do not already have one. This is an information database that is provided via your GP. It includes important information such as medication condition and diagnosis, relevant and past medical history, all prescribed medication your child is taking, allergies, baseline blood pressure, emergency response wishes, emergency contact details, contact name and number of the ward, if your child has open access at    local hospital, any social services involvement, name and contact number of a children’s community nurse. It is useful to also pass a copy onto your child’s school for their information. (Open access at your local hospital can be very important. CDG patients can become unwell very quickly and it is reassuring to be able to ring the hospital and let them know that your child has open access and needs to be assessed. Your child’s consultant will need to make the referral for open access.)
• A list, or a current prescription, showing all prescribed medicines. It is possible that the hospital pharmacy will need to replace medication used; depending on the duration of time in hospital.
• Personal Child Health Record red book so all weights and height measurements can be recorded.
• Feeding pumps can be very difficult to find on the ward. If your child is fed through a naso-gastric tube or a g-tube, stick your child’s name on the feeding pump and charging lead to bring with you. It would be helpful to hand over a copy of your child’s milk recipe; particularly if supplements need to be added. Include the amount to be given at each feed time and, if applicable, the amount to go through an overnight feeding pump. If you have brought your feeding pump in from home, you will not have the added stress of feeds being delayed due to there not being an available feeding pump. You may also wish to bring in a handful of hydro bags and giving sets. It’s best to be prepared rather than assume the hospital will have either the same make of feeding pump or compatible feeding equipment for your child’s feeding pump.
• If your child has a mini button, bring in a couple of g-tubes from home and ask the medical staff for a cold water sterilisation unit so you can keep the tubes clean and safe from being knocked off bedside table or shelves between feeds.  The space within each patient cubicle is not huge so keeping feeding equipment in a closed unit helps keep everything safe and organised.
• Any specialist milk formula and supplements.  You will need to sign these over to the nurse on the ward. The hospital will have a milk kitchen, where the milk feeds will be made up on a daily basis.
• Nappies/incontinence pads, wipes, cream and nappy sacks if applicable to your child.
• Clothing (bring spare for yourselves as well)
• Nightwear
• Toiletries (simply being able to clean your teeth may help keep the stress at bay)
• Mobile phone and charger. Connection to friends and family as well as social media will help keep cabin fever at bay.
• A notebook and pen to jot down anything that you may feel you need to refer back on. This is particularly useful when updating friends and family later.
• A book or kindle to read while your child sleeps
• A selection of non-perishable snacks and drinks for those times when you do not want to go to the canteen. If your child is in hospital for more than a week or so, the hospital staff may be able to give you a form to allow you to get meals or snacks in the canteen at a reduced rate. It will need to be signed off by whoever is in charge of the ward at the time. The food is getting better in hospitals!