Before James was born I had never really heard about or had any experience of nasal feeding or gastrostomy feeding. I had reached 29 years of age without them entering my radar. However, as with a lot of things after James was born, I’ve had to learn about it.
James always struggled to feed, right from day one. We didn’t know why at the time other than the fact that he had a very poor suck, was weak and didn’t appear to have any appetite at all and, added to that, he had very severe reflux. He could vomit to the other side of the room and he did so numerous times most days!! It wasn’t until much later when he was diagnosed that we became aware of the feeding issues associated with Wolf Hirschhorn Syndrome.
James struggled to put on any weight at all and so early on I was taught how to insert nasal gastric (NG) tubes to supplement James’ feeding. With chronic reflux it was a bit of a vicious circle, I’d put the feed down, James would bring it back up. And then James learnt how to pull out the NG tubes and it wasn’t pleasant for him (or me) to have to keep putting them in.
James was regularly in hospital during his first couple of years as he was failing to thrive and constantly losing weight. As a result of this, following his open-heart surgery at 13 months old, he had a surgical procedure to insert a PEG which is just one of several types of Gastrostomy Feeding Tube. This was changed a year later to a MIC-KEY feeding button when he also had stomach surgery to help correct his reflux (Nissans Fundoplication).
What is a Gastrostomy Feeding Tube?
It is a device that is inserted into your stomach directly through your abdomen. It allows nutrition to be supplied directly into the stomach. This may be required due to an abnormality of the mouth or oesophagus, difficulty with swallowing or keeping down food, or any condition that means the patient is not able to get enough nutrition or fluid by mouth. The insertion of a feeding tube is a medical procedure and is carried out in hospital. A gastrostomy may also be referred to as a PEG (percutaneous endoscopic gastrostomy), EGD (esophagogastroduodenoscopy), or G-tube insertion. As with all surgery it is not without its risks and only carried out after consideration is given to the alternatives. It is considered as a long-term way to support someones nutritional needs.
Types of Feeding Tubes
There are several types of feeding tubes but these can be grouped into two categories:
PEG and Long tubes – these are one-piece tubes held in place by a retention balloon or by a bumper. Often used as a first gastrostomy but they can be more cumbersome because of the length of the tubing.
Low Profile tubes or Buttons – These do not have a long tube permanently attached therefore they have the benefit of lying fairly flat against the body. For feeding purposes you attach a longer extension tube.
There are two types of low profile buttons – Balloon and Non-Balloon:
▪️ Balloon buttons are held in place by a water filled balloon. Once trained balloon buttons can be replaced at home by caregivers. Replacement can vary between 3 months and a year depending on individual circumstances.
▪️ Non-Balloon buttons are harder to pull out because they are not reliant on a balloon of water holding them in place which can potentially burst. However non-balloon buttons cannot be replaced at home and will require some sedation/pain relief during the replacement procedure.
Buttons come in different sizes. The correct size of the button is determined by the size of the patient. They are sized by width using the French scale and the length of the button stem is measured in centimetres based on the length of the tube stem (the part that enters the abdomen). The G-tube should not press tightly against the skin and should rotate freely without being too loose. After initially having a PEG James has had a MIC-KEY button for many years. His current size is 14Fr 1.7cm. The water in the balloon needs changing regularly, preferably weekly.
Possible Complications
Fortunately, serious complications are rare but not impossible and something to be considered. The most common issue can be the formulation of granulation tissue around the tube site. This is overgrown tissue that can be very sore, painful and may bleed. Some people, unfortunately, seem more susceptible to this than others. This will need to be seen by a medical professional.
Diarrhoea or constipation can become an issue for some people who are fed enterally. It is important to make sure that the feed, which is commercially produced, is stored correctly and also that the care giver who administers the feed is practising good hygiene to rule either of these out as the cause. It may be that the feed is not the right formulation and so this will need to be discussed with the dietician/enteral team.
The stoma is similar to an open wound and therefore may be prone to infection. It is important to clean and dry the site every day. This can be done in the bath or shower with warm water. Dry the area carefully by dabbing and rotating the PEG/button to ensure it is moving freely and fully dried.
Feelings of nausea or vomiting can be a sign of the food being given too quickly or that the stomach is emptying too slowly. The feed being given could also be too high in protein or calories, or the button may have moved position. Again, this needs to be discussed with the relevant professionals.
The feeding tube can become blocked. This may be because medication has not been dissolved sufficiently or the feeding tubes have not been cleaned sufficiently. Good hygiene is imperative. I was taught at Southampton Hospital to wash all feeding tubes and equipment in ordinary clean washing up water. After washing I flush the extension tubes with syringes of clean water and store them in an airtight container in the fridge.
My Experience
I have been asked in the past by other parents if I would recommend their child have a gastrostomy for feeding. I can’t advise other people what to do as it’s a very individual choice. I can only tell them what our experience has been and that it has been very positive for us and James for the reasons I have summarised below:
▪️James was failing to thrive as he could eat so little orally. With a combination of bolus and continuous feeding he has reached his potential growth wise and has remained relatively healthy. He is much stronger and more robust than I once would have imagined he could be. At times when his growth has waned, or indeed if he has put on a spurt, his calorie intake can be adjusted accordingly with consultation from his dietician. He also has an additive (OptiFibre) added to his bolus feed to help keep his bowels regular.
▪️ James is phenomenally bad at drinking enough. With his button we can give him extra fluids as required making sure he stays hydrated. Especially helpful in the very hot weather.
▪️ We always have the option to administer medications (ensuring you always ask for liquid meds) via his button. This is helpful when medication tastes particularly nasty or when he is sleeping or having a seizure 😔.
▪️ James has never really had any granulation or soreness around his stoma site. I have seen some really horrid infected ones, in one particular case I recall this was clearly due to poor hygiene.
▪️ Unless James’ button has burst (it happens occasionally), I routinely change his button every 6 months as he is provided with two a year. The lifetime of a button can be affected by how much it is used and what medications go through it – hence good care and flushing is important.
▪️ James has had a gastrostomy for so long that he accepts it is part of him, he rarely touches it. He is very co operative with his gastrostomy feeds and button changes, he will simply pull up his t-shirt for you when you ask. It has not impeded him doing anything like swimming, he wears a rash top to keep it covered but it is no issue.
Terminology
▪️There are 3 types of feed regime:
Bolus – an amount of feed given by gravity over 20 minutes or so.
Continuous – When food is pumped slowly, often over a number of hours.
Combination – A combination of the two above (James has a bolus feed in the morning and a continuous feed for 6 hours overnight)
▪️ Enteral – a form of nutrition that is delivered into the digestive system in the form of a liquid.
▪️ Stoma – an opening into your body made surgically.
▪️ Gastrostomy – an opening made into the stomach from the abdominal wall, made surgically for the introduction of food.
I am not at all medically trained. What I have learned is purely from my own experience and from how I have been shown to care for James by his medical team over the years. The information above, and opinions shared, are purely my own. If you have any questions about Gastrostomies and Gastrostomy feeding please seek out and speak to the relevant professionals who can guide you.
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