Your child will not be allowed home until the team are sure that you are fully able to cope and aware of everything that you need to know and are confident that you can do it without incident. If your child is old enough they too will be instructed on the correct procedures. Your child will be monitored in the community often by a multi-disciplinary team, including a dietetian, district nurse (often a specialist in enteral nutrition) and their GP. Each will have a specific role involving your child’s care and you will be made aware of these and given information on who to contact when and how. It is important that your child is receiving the best feed for your needs and you may find that as their treatment continues and they get older that their requirements may change. It is essential to ensure that they are getting the appropriate mix of nutrients and therefore regular blood test will help to determine whether their needs are being met. Anyone on enteral nutrition, particularly if they are just beginning treatment and/are very underweight or malnourished are at risk of “refeeding syndrome” and regular blood tests can pick up on this in its early stages, before serious complications arise.
One of the big issues will be ensuring that there is sufficient enteral feeds and equipment available for you to take and this will be done by your homecare company. Depending on the length of the holiday they supplies will be delivered to you direct, for you to take with you or for longer holidays they may transport the supplies directly for you. You will need to make arrangements with the airline and airport to ensure they are aware of your requirements and you will be asked for a medical note from your doctor to confirm the need.
Yes, there is no reason why they cannot make friends just like everyone else. Even if the tube is in your nose, it generally does not make it any more problematic to make friends, especially when they are younger. They may even find that other children will want to talk to them based on curiosity about the tube. There may be more issues when he/she gets older and become body conscious, but there will be support offered to help them to deal with this.
There is every chance that your child will be able to attend school and the doctor will inform you of when they believe that it is appropriate for them to do so. You will be included in this decision and your child's care team will help yourself, your child and the school establish a safe and effective environment.
There is always a worry about how feeding tubes will affect body image and in children there is often more concern that if they require a feeding tube during puberty and adolescence that this can be a more difficult issue and could have physiological issues which continue into adulthood. Every child is likely to deal with this differently and in children who have had a feeding tube in place since birth or from a very young age that they may be more accepting of its presence and able to overcome the body image issues easier than children who find they require a feeding tube for the first time later in their childhood. No matter how comfortable your child may be with their feeding tube and their specific requirements, puberty especially is difficult for almost everyone when it comes to body image. It is important to remember that there is support available from your child’s health care team and it is likely that the team will be aware of the increased potential for body image issues in child with feeding tubes in situ.
Yes, generally speaking there are no medical or physical reasons why your child can not attend school and to do so on a full-time basis. There will of course have to be specific arrangements made with the school and the level of intensity will depend on the age of the child, their personal care needs, and their own level of independence and the facilities of the school. If your child has never been to school before, then there will need to be a meeting with the school to explain the situation and organise for extra support if needed. The school nurse may not be formally trained to deal with enteral feeding and/or may not be confident in doing so. Arrangements will need to be in place to ensure that there is someone on site who is able to provide assistance to your child, especially in an emergency. This responsibility may fall to you to begin with, but it may be possible for the school nurse to be trained either formally or even by yourself (after all you are an expert!), or the school may be willing to recruit a Special Education Needs Support (SENS) worker. The same type of meeting and arrangements will need to be made even if your child has been to school prior to starting treating. You may find in this instance that the doctor suggests that the return to school be staggered, to allow both your child and the school to familiarise with the new situation and ensure that everything is in place for your child and their safety.
Again, this will depend on your child’s state of health, level of mobility and the school policies. Your child's doctor will provide you with information regarding what sports he/she are able to participate in and which should be avoided. In general, exercise is beneficial to the growth and development of your child, so it will only be advised against for a good reason. You may find that your child is advised against contact sports, as there is a potential risk of displacement of the feeding tube, which could be very dangerous. You will also need to discuss this with the individual school as there may be additional requirements for supervision or support for your child during sports, due to insurance and health and safety policies.
Yes, there is no reason why you cannot allow your child to play in the fresh air, unless your doctor or nutrition team has inducated otherwise. It may be advisable to have an adult to supervise them, ensuring that they are safe, but generally as they get older they will want to be more independent.
In general yes, swimming with enteral feeding tubes is allowed, in both adults and children and on the proviso that your child's nutrition team say that it is safe, then both nasoenteric tubes (a tube fed from the nose) and enterostomy tubes (a tube inserted through the abdominal wall) are safe to submerge in water, (including water which is chlorinated). It is important to ensure that the external end of your child's tube is securely in place and that the external tube is strapped up. It is often advised that you make your child wait a short while before going swimming if they have recently been in hospital for anything, or if they have undergone a procedure to insert an enterostomy tube.
In relation to the feeds and equipment you need to ensure you have sufficient stock to take with you. Depending how your travel plans fit in with scheduled deliveries you may need to order stock in advance or there may be the possibility of having a delivery made to your holiday destination or departure port. It is recommended that you provide as much notice as possible if you require assistance from the homecare company. If travelling by plane you will need to make arrangements for any additional baggage charges. It is advisable to ensure you have supporting literature that states why your child is tube fed and that the supplies are for personal use only.
If you are travelling abroad always consider what you might do in the event of needing medical support for your child. Always ensure you are appropriately covered with travel insurance in relation to having to either travel home early or stay in the event of something unexpected.
Your child's doctor will make sure that he/she are safe to travel and will discuss with you some of the practical issues that you will need to consider before you travel. They will be able to provide documentation to allow you to obtain travel insurance, supply fitness to fly certificates (if applicable) and give you practical advice on managing away from home.