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What are the types of feeding tubes? How is the feeding tube placed? How do I care for my child's tube? What if we run into a problem?
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Other questions you may have. When dealing with a feeding tube there are a lot of questions you may have. These are only a few of them. If you have any questions that you feel might be helpful to other parents please email us so that we can add them. Will there be any leakage from the stoma around the tube? Sometimes it can leak a little, but you just need to clean the area with some damp gauze. If it continues leaking, the ooze is a yellow/green and has an odor or the skin around the site is irritated, please call your doctor. For us continued leakage is also a sign that there may be a pin hole leak in the balloon so it becomes necessary to check the water level. Will my child be able to go to school? Your child should be able to go to school as normal. I would check with the school ahead of time to work out any details. We just had to have a doctors note telling the staff at the school what to do if the device falls out. What about Swimming or Physical Education(PE)? Your child will be able to go swimming in chlorinated pools once the gastrostomy site has healed, as long as he or she does not have any other problems which prevent this. Regular PE classes are also ok, but if your child particularly enjoys contact sports, ask the medical team for advice. What should we do about mealtimes? For the sake of the rest of your family, try to keep mealtimes as normal as possible. Encourage your child to join the rest of the family at mealtime, even if he or she is not eating. Can we go on vacation? It is fine to travel with your child. However, if your child has complex needs you should discuss your travel plans with the doctor. Remember to take extra supplies with you, in case you end up staying longer than you planned. If you are planning a trip to the beach, cover the gastrostomy with a large dressing to stop sand getting into it. Sand can irritate your child’s skin near the stoma site, cause an infection or damage the device itself. It may be helpful, particularly if your child has other complex needs, to take a letter from your doctor explaining your child’s medical history. This will help if you need to seek medical advice locally. How will the we feel about gastrostomy feeding? You, your child and the rest of your family may feel from time to time that you are tired of gastrostomy feeding. It affects every family in a different way, but the following are problems that commonly crop up. Try to treat your child as normally as you can. Children who are over-protected or treated differently can become demanding. Your child is only 'different' in the way he or she feeds. Your child will be happier if rules stay the same and life carries on much the same as before. When you leave hospital, you may find your child is more demanding than usual. This is a common reaction to being in hospital, so you should expect it. Your child may become more clingy or revert to earlier behavior, such as bed wetting, until he or she is used to being at home with you again. If you are worried about your child’s behavior, please talk to your doctor. They may be able to offer you help and advice about settling back into a normal routine once your child returns home. Your child may feel self-conscious about his or her tube. Talking to other people who have experienced this can help - we have a tube feeding support forum on the Parent-2-Parent Community Your child, you and the rest of your family may feel that everything has to revolve around feeding. Keeping to your normal routine as far as possible – by maintaining the usual mealtimes and bedtimes, for example - may help. If you have other children, they may feel upset at the attention their brother or sister is receiving. Having 'special time' with your other children may help. If relatives and friends seem to focus on the child who has a gastrostomy and pay less attention to your other children, you could ask them to treat all your children equally. Will my child ever be able to feed by mouth again? This depends on the reason why your child needed the gastrostomy. Your medical team will discuss with you if and when they would like your child to try feeding by mouth again. At first, your child may seem to have ‘forgotten’ how to eat and drink by mouth. If this is the case, a speech and language therapist will offer advice and support. When your child is feeding successfully, the doctors may suggest removing the gastrostomy tube. What happens when the gastrostomy device is removed? The method of removing the gastrostomy device varies according to the type your child has. Your medical team will explain this as your family is nearer to that time. Once the device has been removed, the stoma will start to heal. It can take a while to heal completely, so you may need to use a dressing over the site. Once the site is healed, there will be a very small scar. Unfortunately, your child will not be able to keep the device as a souvenir, as it may carry bacteria and the risk of infection is too great. |