You or your loved one have had a feeding tube put in while in the hospital and now they’re talking about home tube feeding and you are scared and overwhelmed.
People go home with feeding tubes?
Tube feeding in the hospital is manageable – you have a complete medical team around you – advising you, checking on you, and providing your care.
If anything goes wrong, they are right there to help make things right again.
What happens at home? Who’s going to give you your feed? What are the steps to feeding? What if something goes wrong?
It can certainly be scary to go from the secure feeling of being in the hospital to being launched out into the world with this completely new way of eating that affects you so deeply.
I’m Jen, a Registered Dietitian with close to 20 years experience working with people on tube feeds.
I have supported thousands of patients preparing for home and managing their tube feeding at home.
In my years of experience, there are a few things that help people feel prepared walking out of those hospital doors and thrive at home with a new feeding tube.
Table of Contents
What is tube feeding?
If you’re here, maybe you are preparing to get your feeding tube or you’re getting ready to go home. Let’s make sure we’re on the same page.
Tube feeding is a method of getting your nutrition.
A tube delivers your food (in the form of liquid) through a tube and into your body.
It is used when you either can’t eat at all or you can’t eat enough by mouth to get what your body needs.
There are different types of feeding tubes that can be used to deliver your nutrition and are named based on where they start and where they end.
Check out my Tube Feeding 101 blog if you want more details on the types of feeding tubes, what to put through your tube and the basics of tube feeding.
Whether getting your feeding tube was planned or something you’ve just gotten thrown into, it’s new to you and you are feeling overwhelmed.
Let’s get into how to decrease your feeling of overwhelm and start to feel confident.
1. Ask lots of questions
Tube feeding is new to you and certainly the idea of home tube feeding is something you weren’t necessarily expecting to tackle.
Eating is something you have to do several times a day – so your everyday routine is turned upside down.
Your healthcare team knows it’s new to you but I bet they don’t always do the best job of remembering that it is.
They use words that you don’t understand and talk so quickly about things that you feel lost …but you are scared to admit it. You don’t need to be scared.
The truth is doctors and other healthcare providers may talk about these things day in and day out and sometimes forget that you don’t.
They are there to help you learn and understand these new things and everything you are going through.
If you were to gently remind them to slow down and ask a question for clarification, chances are that they’re going to be happy to answer your question for you.
It’s totally ok to ask them things like:
- What type of tube they’re thinking of putting in
- What that means for your options for feeding formula or blended tube feeds
- Options for feeding schedules
- How you’re going to be able to do things like swimming or playing sports
- Ask to talk about how it’s going to affect you going to school or work
- What happens if your tube gets blocked or worse, falls out
I’m sure you have lots more questions. Ask away!
If they can’t answer your question directly, they can usually tell you who can answer your question or give you resources to help find out.
And once you get started with the next step, I’m sure you’ll have more questions. That’s ok and totally natural!
2. Practice, practice, practice
In my hospital, we teach you or your family member how to give your feeds and feel independent doing so BEFORE you go home.
This means explaining the type of tube and where it goes, the equipment and supplies involved and what they’re used for, your formula and funding for your formula, and your feeding schedule.
While you practice the steps in the hospital, it’ll spark more questions to ask and you’ll gain more confidence along the way.
You practice all the steps and master them so you feel more confident when you get home.
Of course, this doesn’t mean that you won’t have more questions or encounter challenges when you get home (my next few tips will help with that).
BUT – you’ve got a routine down and it’ll be that much easier to transition home if you’ve actually practiced all the things before you get home.
If your team tries to send you without any of this education or practice, this is a time to remind them that this is all new to you and ask for more resources and time to practice.
If you are getting your tube as a day procedure in a hospital, ask for a referral to someone that can help further.
Where I live, this may mean getting a referral to an outpatient clinic, a homecare nurse and dietitian, or a private practice dietitian who specializes in tube feeding.
Even if you don’t have all the steps mastered in this situation, make sure you know who you can contact if you need something.
3. Have contacts to reach out to for help
Before you leave the hospital, ask your team about who you should reach out to with follow up questions or challenges.
Depending where you live, you may be connected with a homecare team or a clinic that you’ll be able to follow up with, maybe your team has an on-call service to reach out to.
Do you have family or friends that have experience with tube feeding that you could also reach out to? Sometimes having someone close to you that is familiar with these things, or even medical things in general can be helpful to direct you on next steps.
Keep your contacts and any instructions in a central place like a notebook or folder specifically for your tube feeds so you can refer to it quickly.
Having a plan in place or a number to call in case of challenges such as your tube getting blocked or falling out, will help you stay calmer in these situations.
The next tip also involves getting connected.
4. Find a tube feeding community
Finding people that are going through the same thing as you can be a great support.
Ask your healthcare team if there are any community groups, or support groups they know about in your area.
There may be a group for people that have had the same surgery as you, or one specific to tube feeding.
If there isn’t anything local, you can search out groups on social media. There are many active groups on Facebook that share helpful tips and resources for tube feeding and have a strong sense of community and support.
You found my blog here today, where I also share evidence based information on tube feeding, blenderized tube feeding and other helpful resources.
If you are interested in being a part of the blending dietitian community, you can sign up for my newsletter here, where I will send you the latest news on tube feeding, tips and tricks, and links to helpful resources.
Communities like this can be a great resource for practical tips, useful information for day to day life with a feeding tube, troubleshooting and emotional support but they should not take the place of advice and direction from your medical team.
5. Make a plan for follow up and adjustments
Just because you left the hospital with a certain feeding schedule and plan, it doesn’t mean that it is set in stone.
Life at home is different from being in the hospital and you may want to adjust your feeding plan after you get settled at home.
You may get home and experience feeding issues like nausea, diarrhea, constipation etc, and you may need your dietitian to adjust your feeds.
Making your own blenderized tube feeding when you’re at home is an option for feeding too. But it may not have been an option that was presented to you in the hospital.
It can offer lots of benefits like improving your GI symptoms (nausea, diarrhea, retching), being able to participate in family meals, and customize what you are feeding your body.
If blenderized tube feeding sounds interesting, check out this blog on the basics of blenderized tube feeding to help decide if it’s right for you.
There may be a time when eating by mouth and getting off of tube feeds will be right for you too and you will need some guidance during this time.
Before you leave the hospital, ask about how to make a follow up appointment to check in and see how your feeding is going at home and to see if any changes need to be made.
Leave the hospital feeling empowered and confident on home tube feeding
Feeling confident with tube feeding can take time but before you know it, you’ll be feeling like a pro!
You are an important member of your healthcare team!
You should have an opportunity to ask your questions and express your challenges as well as successes with your nutrition plan.
When you actively participate in learning and ask lots of questions, you will feel more empowered and confident with the plan.
When you have a plan for follow up and know who to contact with questions or concerns at home, you will feel more secure walking out of the hospital and going home on tube feeds.
If you need more personalized advice about home tube feeding and you want a dietitian supporting your nutrition goals contact me here to book a discovery call and chat about how we can work together.