Caring for a child, parent, or another family member that has a feeding tube can be challenging, both physically and mentally. There are many challenges that you will face and many emotional barriers that you will have to overcome, but they are all part of the crazy thing we call life. Many emotional blocks that you will face will not just be at home. They could occur at school, church, or at outing around friends and family. They might be issues with the tube itself, getting enough sleep, or just general added stress.
Every parent deals with all of these road blocks, but it can be hard when you add a feeding tube into the mix because you sometimes have to handle situations a little differently. Although all of these roadblocks might look like huge hurdles that are impossible to get over, they most certainly are not!! In this post, I will be going through just some of the potential challenges that you could face, and the most beneficial ways to get through them.
Tube Feeding at School
Tube feeding in the school cafeteria can be a bit stressful for not only the child, but also for the parent. Parents want everything to go right and according to plan. Unfortunately there will always be hiccups, but you can make sure that everything is planned out and your child has the best possible adults to help him or her through the lunchtime chaos.
The most crucial step for lunchtime are the safety procedures. The school should be informed of the proper handling techniques when helping your child, including:
- Having clean hands before attaching any tubes or extensions
- Wear gloves when appropriate
- Ensuring that tube sites are NOT touched by any other students
Many schools do have policies for feeding tubes, and what to do in case of emergency and who to contact, but it is important to make sure you are aware of their policies. Other steps to ensure that your child has the safest and smoothest possible time both in and out of the classroom include:
- Writing down instructions for your child’s feeding schedule/routine. Be specific with volumes, periods of time, water flushes, medication, etc.
- If you are sending in supplies, make sure they are clean and properly labeled for the school nurse or healthcare provider
- Make sure the food/formula is in a cool ice pack and make sure the healthcare provider knows if it needs to be refrigerated.
- Talk to the teacher about any potential allergies as well, or any limitations that your child may have, both in and out of the classroom.
These tips will help ensure that you and your child have a stress-free time at school, and be surrounded by healthcare providers that can give you ease that your child is in the best hands possible at school, and that they are happy!
Family and Friends
Family is the most important thing in life, and it is easy for a child with a feeding tube to feel left out, especially if his or her siblings do not have a feeding tube. However, this situation can easily be avoided by making small tweaks in the day-to-day activities that your family does.
- If your doctor is ok with it, work with a Registered Dietitian to try a Blenderized diet, or Blenderized Tube Feed (BTF). Blending a serving of the family meal for tube feed use can let the whole family enjoy the same meal.
- If your child or family member is interested in food, let them help with it! Eating foods is only a smart part of our overall interaction with them. Let your loved one help with gardening, grocery shopping, or cooking to stay involved.
- Meals are an unavoidable part of life, so keep your loved ones involved in them. As kids grow into adults meals will be part of social gathers, work meeting, and holiday. While most people think of meals as a time to refuel, there is more and more grower research about the importance meals have on our society and our long term relationships with foods/nutrition. Kids should learn how meals work and how to hold conversations at the table.
Have you ever gotten a comment at a get together about what you should be doing to get you child to eat? Family and friends sometimes have a way of giving advice when it’s not asked for, or not even appropriate to your situation. In most cases they truly don’t understand the situation and need to be “educated”, as we say in healthcare, on whats going on. Educating a family member or friend on why your loved one can’t eat, or can’t eat enough, and why they have a tube feed can help prevent future issues. Communication is the key to good relationships!
How to Deal with Stress
Stress is a natural feeling in general, but can be excessive when you are a new parent dealing with a child who has a feeding tube. When you are stressed, it can be dangerous to not only yourself, but to your child as well because they can see that you are unhappy and that you are dealing with things that they might not understand. Your child might always come first for you, but it is crucial that you do take time for yourself because it can help make you a better caregiver for both your family!
The first step in reducing stress is to take time out of your day for yourself, which can easily be done by taking a bath, finding a quiet place to read a book, taking a nap while your child naps, or even do a little exercise. Many of these stress relievers do not have to cost any money, and can be done in your own home, and can even involve the kids! By taking a short walk, either alone or with the kids, you can reduce the amount of day-to-day stress that you may be feeling, and can help give you some fresh air and easy exercise.
The saying goes, “don’t stress the small stuff”, and it’s true! Many small things can irk you or make you feel like nothing will ever go your way, but it is important to find the positives in everything that you do. The more you let the small things go, and focus on the bigger picture, the happier you become and the less stressed you are! Your children will always look up to you as their role model, so it is important to teach them how to be happy and let the small things in life go. Focus on the happiness that surround you and your family!
Everyday Struggles
The life of a parent or child with a feeding tube can be a struggle, and there will always be challenges that both you and your child will face, both at home and in the public, but it is important to remember that everything happens for a reason, and that each situation that we are put in benefits us in some way, even if we don’t understand why at that particular moment in time.
There will always be difficulties that you face when you have a feeding tube, especially in the early stages when everyone is still trying to figure out what to do, the schedules and routines, and how to make your child the most comfortable. Many companies have started to make products that make your child feel as comfortable as possible, and make this process as easy as possible, especially when they are going to school or with their friends. Products like the G- tube pads, feeding tube backpacks, G-tube wraps and bands, and protective belts all ensure that your child’s stoma and tube are protected and secure, and it can give you relief knowing that your child is comfortable, protected, and happy!
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I hope all of these tips and positive reinforcements have helped relief any stress that you might have about feeding tubes, school and home life, and how to ensure that you and your family are happy and comfortable! This process is not easy, but there are ways to ensure that everything goes as smooth as possible, because there will always be hiccups in every situation, but you just have to look at the positives and see how each bump is a learning situation.
The Tube Feed Dietitian 