Frequently Asked Questions: Feeding Tube Edition

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Hey friends! I get so many questions about Adeline's feeding tube, so I thought I would compile them all into one place.  If something is not covered here, please reach out to me because I would love to hear from you.

Frequently Asked questions

Will she always have her feeding tube? 

This is the most frequent of the most frequent questions people ask me and the answer is hard for me to say, and hard for people to hear.  The simplest answer, we do not know but hope so!  What we know for now is it's going to be a really long time before it goes away.  Right now, her belly is only tolerating about 50% of her calories via feeding tube and the rest is via IV nutrition through a catheter. 

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Does her tube hurt?

Occasionally it does hurt.  When she first got her tube, it took a few weeks to heal and she has increased pain if we change it or go up in size.  It is more uncomfortable for her if it becomes loose (water in balloon is low), the tube breaks, and when she has increased GI symptoms.  When she retches and vomits, she will hold her tube as if it hurts her.  She has always avoided time on her belly. Occasionally we will get a granuloma (a mass of granulation tissue, typically produced in response to presence of a foreign substance such as a feeding tube), which can caused increased pain or discomfort. .She cannot tell us yet that her tube is hurting but will confirm if we ask.  Luckily, she only touches it, pulls at it if it hurts..  

What does daily maintenance look like? 

Daily maintenance varies.  Adeline has to be fed 16 hours a day so there is a lot of times during our day that we are connecting and disconnecting her from her feeds.  Her formula needs to be made for the day, each day she needs a few feeding bag, we have to prime her food through the bag and connect it to her IV pole.  Whenever we leave the house, we have to transfer her feeding bag/pump into her adaptive backpack from her IV pole.  She needs her extensions connected to her tube, they are flushed with water every 6 hours, after we disconnect her, or following medication and they are changed each week.  She receives all her medication through her gtube, so syringes need to be prepped, medication administered, and then extender flushed and syringes cleaned.  I wash around her tube at least once a day with soap and gauze, more often if discharge, or if she has a granuloma.  Her gtube also needs to be vented overnight, during naps, and we vent her manually if she is not feeling well.  We vent her by connecting her to suction tubing and specimen trap which needs to be set up each night, cleaned, and replaced weekly. You have to order supplies monthly, get a ton of supplies and you need to unpack, organize and keep inventory of all these supplies.  It is such a part of my routine, I am sure there are tons of things I am forgetting.

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How often is the tube replaced?

Her GJ Tube needs to replaced in the hospital.  The frequency of replacement depends on your medical team, approximately every 3-6 months.  The change is done by Interventional Radiology (IR) and may be done under anesthesia or light sedation dependent on the hospital or your child. A GTube can be replaced at home once you are trained and is done about every 3-6 months.  

What is it like having a tube fed child?

There are good days and bad.  Having a tube fed child means extra work, extra patience, and extra adjustments, but it eventually becomes your "new normal".  There are some days you can be frustrated with the tube, and other days you are so grateful for it.  It's a life changer and life giver for our family.  Most of the time I do not think about it.  It is much more difficult dealing with the health issues that cause her to be tube fed vs. the actually tube itself. 

Do family members help with tube care?

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It is really difficult to find a babysitter, and it requires quite a bit of training before you would let anyone babysit your tube fed child.  The easiest & best people to have watch Adeline are nurses that have her inpatient, know her well and understand her care.  My parents right now are the only ones who know how to help with her tube care, but they live 2.5 hours away.  We see them about 1x per month.  Suffice to say we hardly ever both leave her, only a few times a year and its typically with my parents.  

Can she get sick more easily?

I get this question quite often, but having the tube itself does not make her susceptible to illness.  She has other health issues; being premature,  chronic lung disease, weak immune system, and having a central line (each illness needs to be treated as a possible line infection so we try to keep her away from crowds during flu and RSV), and short bowel syndrome that makes her get sick more easily or have a more difficult time getting over an illness. 

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Does Addie eat anything by mouth? 

Adeline gets her nutrition in a variety of ways and she can eat a little bit by mouth.  She breastfeeds, and her favorite food include cheese, yogurt, pizza, and pancakes.  She cannot eat a lot, very minimal, and needs things cut up really small.  She has been in feeding therapy for 1.5 years and counting. 

What does she eat through the tube?

Right now, Adeline gets a specialized, amino acid based, hypoallergenic, dairy free, prescription formula through her J tube, and her medication through her G tube. Eventually I hope we can move a more blended diet, but she is not ready for that yet. 

When Addie starting moving, how did you keep her from pulling tube? 

The struggle is real on this one!! She does carry her feeds and is able to do that for about 1 hour per day.  My husband made a feeding tube pump/cart that follows her around using a gym scooter and harness.  This is great for us because when she started to move she did not have the strength to carry her feeds. 

Why did you go from G to GJ tube to TPN?

I get this question often, since Adeline sort of went backwards needing more and more supports in order to grow.  We decided to convert from G to GJ tube after several months of no growth, frequent vomiting, inability to increase her feeds, and overall discomfort.  Converting from G to GJ allowed her to tolerate about 25% more calories.  She continued to have a lack of growth, frequent vomiting, needed constant periods of gut rest, and  was diagnosed with intestional failure.  It was at that point she started TPN for about 50% of her calories.  

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Any other questions?? Ask Away!