children s gastrostomy care
TRANSCRIPT
nThe Leeds
Teaching HospitalsNHS Trust
Children’s Gastrostomy Care
A guide for parents,families and carers
Useful numbers
Professional Telephone Number
Name Telephone Number
Ward
Consultant Surgeon
Dietitian
Nutrition Nurse SpecialistCommunity Nurse
Local Hospital
Community DietitianLocal Paediatrician
GP
Health Visitor
School
School Nurse
Home CareCompany
2
What is a Gastrostomy?A gastrostomy is an operation to insert a feeding tube through the abdominal wall into the stomach. This allows children to be fed directly into the stomach, by-passing the mouth and throat.
The operation is performed under a general anaesthetic. Your doctor will explain the operation in detail, answer any questions you may have and then ask you to sign a consent form.
Why does my child need a gastrostomy?There are many reasons why children may have difficulties feeding, including neurological (nervous system) disorders and gastrointestinal (digestive system) disorders. Some children have difficulty swallowing and they are at risk of choking during feeding (aspirating), which can cause chest problems. Other children who can eat and drink in between normally and require extra nutrition because of a chronic medical condition like cystic fibrosis or renal failure. Your doctor will explain the specific reasons why your child needs a gastrostomy.
What type of gastrostomy tube will my child have?There are several different types of gastrostomy tube used in Leeds Children’s Hospital. Which tube is best depends on the age, medical condition and special needs of your child.
3
What types of tubes are used at Leeds Children’s Hospital?
Percutaneous Endoscopic Gastrostomy (PEG)
A flexible, polyurethane tube which is inserted using a telescope passed down the throat into the stomach.
This tube is inserted without the need for an incision on the tummy wall and is the first choice for most children who need a gastrostomy. It lasts for about three years. A plastic disc inside the stomach stops the tube from being pulled out.
After 14 days the PEG tube must be advanced and rotated daily to help the healing process and prevent it sticking to the stomach lining. It is usually removed or changed under a short anaesthetic, using an endoscope.
Balloon Device (Tube or Button)
There are two types available: a gastrostomy tube (G-tube) and a button (or low-profile device). These are sometimes inserted as a new gastrostomy with a different technique to a PEG but are more often used after a PEG has worn out. This involves a short anaesthetic and telescope procedure to change device.
The tube and button can stay in place for about 4-6 months. Both are held in place in the stomach by a small silicone balloon, which is filled with water. The water in the balloon should be checked/changed every 2-4 weeks.
A feeding extension set is attached so feed, medicines and water can be given.
These tubes can be changed at home without an anaesthetic, by deflating the balloon.
4
What are the risks associated with placing a gastrostomy?All gastrostomy operations involve a general anaesthetic. The risks of general anaesthesia are about 1 in 10,000, which is about the same as the risk of crossing the road. It is routine to give an antibiotic immediately before inserting the gastrostomy because there is a small risk of infection. There is a small risk of bleeding and there is a small risk (less than 1%) of penetrating the colon or small bowel when inserting the PEG. This may require an operation to fix. In some patients, for example those with severe curvature of the spine it may not possible to insert a PEG using a flexible telescope alone. In this case a second telescope may need to be passed into the tummy or a small incision made.
What are the potential problems with having a gastrostomy?
There are some potential problems associated with having a gastrostomy. These are explained and the methods of dealing with them are included in ‘Your guide to trouble shooting’ on page 23.
PEG Tube Balloon G-Tube Balloon Button
5
I have decided that my child will have a gastrostomy. What happens now?Your child’s name will be placed on the waiting list for gastrostomy placement. The date of the operation will be sent to you by post.
At this point you will be required to watch the gastrostomy videos at www.lchtv.com/gastrostomyThese include:
1. Introduction to PEG/button
2. Post surgical & discharge info
3. Gastrostomy cares
4. Problem solving.
You will also need to complete feed pump training if you have not already done so (ask your dietitian) and make sure you have a feeding plan ready for when the gastrostomy is in place.
What happens before the operation?Before the operation, your child will have a pre assessment. This will be either in the hospital or over the telephone.
Following your appointment you will need to come into hospital the day before or on the day of surgery at the time indicated on your letter. We have to fast children for six hours before surgery although water or diluted juice is allowed up to two hours before the operation. The nurse on the ward will welcome you and your child and complete the necessary paperwork. The doctors will explain the surgery in detail, discuss any worries you may have and ask formally for your consent for the operation.
6
Signing this form does not mean that you cannot change your mind although it is best to be certain that you want to go ahead with the operation before coming into hospital. The anaesthetist will visit you on the ward to explain the anaesthetic. Your child may need a blood test before the operation.
What does the operation involve?You will be able to go to the operating theatre with your child and stay while the anaesthetist puts them to sleep. We will then ask you to return to the ward whilst your child goes into the operating theatre. Once the operation is over your child will go into the recovery room where you will be able to join them whilst they are waking up. You can then accompany the ward nurse and your child back to the ward.
What happens after the operation?Your child will be settled back on to the ward and it is possible that he or she will feel a bit groggy. Your child will have an IV drip. The surgeon / dietitian will decide when your child can have anything to eat / drink. It is rare for a PEG operation to be very painful but painkillers like paracetamol (Calpol) may be necessary. Sometimes these are given down the new gastrostomy but sometimes they are given by a suppository inserted into the bottom.
7
When will we be taught how to deal with the gastrostomy?You should watch the training videos at www.lchtv.com/gastrostomy. After this, the nutrition nurse or ward nurse will discuss tube care with you before discharge. There will be lots of information but we will make sure you are confident before you go home. Although it may feel daunting at first it will quickly become easier and remember there is always someone on the end of the telephone to advise and reassure you.
How do I know the gastrostomy tube is in the correct place?
There are two ways to know that your child’s tube is in the correct place. The external length of the tube will need to be measured with a tape measure; if your tube has been shortened remember to measure the new length. The second way is to attach a syringe and draw back on the gastrostomy tube and test the gastric fluid obtained with pH paper.
If you obtain pH1-5 this indicates an acid reaction which shows that the tube is in the stomach. If you are worried that the tube is not in the correct place or you obtain a pH of more than five you should seek advice from the ward, specialist nurse or community nurse.
When do I need to check the pH ?
For PEG tubes; check pH and external length daily for the first two weeks and then before and after advancing and rotating (daily).
For balloon buttons; check pH daily for the first four weeks and then before/after balloon water checks/ button changes.
8
Starting gastrostomy feedsThe dietitian will discuss the most appropriate method of feeding your child. There are two different methods of feeding for a child with a gastrostomy:
Bolus – a specific amount of feed given in one go, usually over 15-30 minutes. This can be given by gravity or by an electric feed pump.
Continuous – the feed is given slowly via the electric feed pump, usually overnight.
Quite often a combination of both is used – bolus feeds during the day and a continuous overnight feed. If you require a feed pump all the necessary equipment and training will be given before you go home.
Gastrostomy feeds are usually started a few hours after surgery. The feeds will be built up slowly to the required amount recommended by the dietitian/surgeon. Medicines can be given down the tube.
How should my child be positioned when having a feed?
Try to make your child as comfortable as possible. The best feeding position for your child is sitting up as this allows the stomach to empty easily. If your child is unable to sit you should try to prop them up into a 30 degree position, for overnight feeding try to ensure that your child does not lie flat. The nurses or dietitians will give you practical tips on methods of how to do this.
9
How do I prepare the feed?
It is important that you wash your hands thoroughly before preparing any feed or setting up any feeding system.
Some feeds come in a ready to hang pack or bottle which can be attached directly onto the giving set of the feeding pump. If you need to make up a special feed the dietitian will show you how to do this and give you a written copy of the feed recipe. Feeds must be thrown away after 24hrs. Your dietitian will advise you on your specific feed instructions and storage.
Important: Always check the feed for its expiry date. Check that the container is not damaged or leaking.
When do I need to change the pump giving set?
If your child is on a sterile pre-packed feeds such as Frebini or Infatrini 500ml packs can be attached to the spike giving set and used for up to 24 hours. Feed packs can be changed, take care not to touch the spike when changing the bag.
If your child is on a powder based feed or has supplements added to ready made feed (e.g. thickener or calorie supplement) pour the feed into a bag giving set.
• For day time feeds change the feed and bag set every four hours.
• For overnight, feeds and bag set can be used for up to 12 hours.
What do I do when I restart the pump feed?
If you are restarting the feed press the prime button and discard a few ml of feed before reattaching the giving set to the feeding tube. After the feed replace cover on the end of the giving set. Avoid contact with clothing.
10
How to make a powder based feed?There is an increased risk of germs getting into feeds when they are made up at home. Extra care is needed to reduce these risks.
1. Wash your hands and dry on a clean towel or paper towel.
2. Prepare a clean area to make up the feeds.
3. Use sterilised plastic jug and utensils to make up the feed. If not possible to sterilise fill the jug containing utensils with boiling water and wait for two minutes before use.
4. Make up with boiled cooled or sterile water
5. Follow the dietitian’s feed recipe and advice on how long it can be stored for
6. Store the feed in a sterile covered container in the fridge for example infant feed bottle or bottle containing sterile water. NEVER store feeds for more than 24 hours
7. Avoid touching the inside of the bag giving set and cap when filling.
Flushing a feeding tube
Why do I need to flush the feeding tube?
When using a feeding tube to give liquid feed and medicines it is important that you flush the tube regularly with water to help keep the tube clean and prevent blockages.
Flushing the tube with water is also important in helping to get enough fluid and keep hydrated. This is especially important if unable to take any food or drink by mouth.
11
What kind of water should I use to flush my feeding tube with?
At home we recommend that you use cooled boiled tap water for flushing your feeding tube. In hospital sterile water is used to flush feeding tubes. It is not necessary to use sterile water at home. Your dietitian will give you further advice if necessary.
How do I make and store cooled boiled water?
• Fill your kettle with freshly drawn tap water and boil the water.
• Pour the boiled water into a clean bottle/container with a screw top lid and leave to cool for at least an hour.
• Put lid on bottle/container and store at room temperature out of direct sunlight.
• This water can be used for 24 hours. After 24 hours throw away any excess.
• Clean the bottle/container with hot soapy water, rinse with clean water and allow to air dry before re-using or clean in a dishwasher.
• You may find it helpful to make up your total daily amount of cooled boiled water at the same time each day.
How much water should I use for flushing my feeding tube?
For children, 5-20ml (for infants 2-5ml) of water for flushing the feeding tube before and after feeding and before and after giving medicines. If you need to give several medicines at one time, you should also flush your tube with 1-2ml of water between each medicine. This will help to reduce the likelihood of the medicines reacting with each other and possibly causing a blockage in the feeding tube.
12
Sometimes extra water is needed during the day to give extra fluid. Your dietitian or nurse will advise you on how much water to take each day. They may advise giving larger volume of water flushes before and after feeds and medicines e.g. 20mL 50mL etc.
How do I flush the feeding tube?
Flush using a stop and start technique, e.g. give 1-2mL then stop and then give another 1-2ml until all the medicine or flush is given. This will flush the tube more effectively and clear medicines more quickly.
How do I use and look after syringes?Syringes are used for giving medication, water flushes and bolus feeds through your feeding tube.
From January 2017 ENFit
The ENFit connector looks similar to the previous connector but is slightly larger. In January 2017, a new international standard connector (ENFit) has replaced the previous connectors on enteral feed sets, syringes and feeding tubes.
How often should I change my syringe?
Use a separate syringe for giving water, medicines and bolus feeds - for example have three separate syringes.
You must clean the syringes between uses.
Change ALL syringes at least every seven days, and more often if the numbers have worn off or there are deposits building up on the syringe.
1312
Sometimes extra water is needed during the day to give extra fluid. Your dietitian or nurse will advise you on how much water to take each day. They may advise giving larger volume of water flushes before and after feeds and medicines e.g. 20mL 50mL etc.
How do I flush the feeding tube?
Flush using a stop and start technique, e.g. give 1-2mL then stop and then give another 1-2ml until all the medicine or flush is given. This will flush the tube more effectively and clear medicines more quickly.
How do I use and look after syringes?Syringes are used for giving medication, water flushes and bolus feeds through your feeding tube.
ENFit syringe
13
If you live outside Leeds the local healthcare policy on syringe use may be different. Ask your dietitian or children’s community nurse for more information.
14
How do I clean and re-use my syringes?
Remove the syringe plunger from the syringe barrel. Wash both components thoroughly in hand-hot soapy water using washing up liquid. Pay particular attention to removing any trace of feed or medication from crevices or corners.
Rinse thoroughly under cold running tap water to remove all traces of the soapy water. Inspect each item carefully to confirm that all traces of feed or medication have been removed.
-se
t h
om
e
10
60m
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-sethom
e
1020
3040
5060ml
-se
th
om
e
10
20
30
40
50
60ml
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-sethom
e
1020
3040
5060ml
14
How do I clean and re-use my syringes?
Remove the syringe plunger from the syringe barrel. Wash both components thoroughly in hand-hot soapy water using washing up liquid. Pay particular attention to removing any trace of feed or medication from crevices or corners.
Rinse thoroughly under cold running tap water to remove all traces of the soapy water. Inspect each item carefully to confirm that all traces of feed or medication have been removed.
-se
t h
om
e
10
60m
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-sethom
e
1020
3040
5060ml
-se
th
om
e
10
20
30
40
50
60ml
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-sethom
e
1020
3040
5060ml
Remove the syringe plunger from the syringe barrel. Wash both components thoroughly in hand-hot soapy water using washing up liquid. Pay particular attention to removing any trace of feed or medication from crevices or corners.
Rinse thoroughly under cold running tap water to remove all traces of the soapy water.
Inspect each item carefully to confirm that all traces of feed or medication have been removed.
1 2
How do I clean and re-use my syringes?
14
15
Shake any residual rinse water off the syringe components and then allow to air dry. Do not re-assemble wet components. Once dry, re-assemble the syringe and store in a clean dry container with a lid.
The syringe may be cleaned and re-used up to six times per day for no more than 14 days.
-se
th
om
e
10
20
30
40
50
60ml
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-sethom
e
1020
3040
5060ml
-se
th
om
e
10
20
30
40
50
60ml
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-set h
ome
1020
3040
5060ml
7 DAYS
15
Shake any residual rinse water off the syringe components and then allow to air dry. Do not re-assemble wet components. Once dry, re-assemble the syringe and store in a clean dry container with a lid.
The syringe may be cleaned and re-used up to six times per day for no more than 14 days.
-se
th
om
e
10
20
30
40
50
60ml
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-sethom
e
1020
3040
5060ml
-se
th
om
e
10
20
30
40
50
60ml
-se
t h
om
e
10
20
30
40
50
60ml
-set home
102030405060ml
-set h
ome
1020
3040
5060ml
7 DAYS
Shake any residual rinse water off the syringe components and then allow to air dry.
Do not re-assemble wet components. Once dry, re-assemble the syringe and store in a clean dry container with a lid.
The syringe may be cleaned and re-used up to six times per day for no more than seven days.
3 4
What do I do if my child is under one year of age?
Clean syringes as in steps 1 and 2, (shown below) and then immerse them in cold water sterilising solution (e.g. Milton - made up as per the manufacturer’s instructions) for one hour. Do not use a steam steriliser as syringes may melt.
15
What about ‘winding’ (venting)?The gravity method of winding is the simplest and easiest way to remove wind, once gastrostomy feeds have been established. It is usually performed before giving feeds and medicines:
• Remove the plunger from a 60ml Enteral syringe and attach the syringe to the gastrostomy tube. Hold the syringe level with or slightly lower than the stomach, and open the tube’s clamp.
• Trapped wind should ‘bubble’ into the syringe, and frequently some gastric contents may also be released.
• Once the wind has escaped, the gastric contents can be gravity fed back into the stomach.
• Occasionally, the wind may be explosive, and project beyond the syringe. The 60ml syringe can be covered with a tissue to prevent this spraying out.
• If the gastric contents reach the 50ml mark on the syringe, clamp the tube and empty into a clean container. This can be replaced if tolerated and not bile (green in colour) stained. Record the amount.
How do I look after the gastrostomy site?The hole where the tube comes out from your child’s abdomen is often referred to as a gastrostomy stoma site. This needs to be cleaned daily with cooled boiled water or cleaned at bath time with mild soap and water. Always dry around the stoma, as any dampness can breed germs which cause infection. Dressings are not required.
16
When cleaning the stoma site it is a good opportunity to check that the stoma is not sore or infected. If you see any changes and are worried you should contact your community nurse.
Some children may be prone to what is called ‘buried bumper syndrome’ (where the internal disc of the PEG tube becomes buried, and the stomach lining grows around it). We would advise that after 14 days the tube should be advanced and rotated once a day.
To do this, check the pH and external length of tube. Undo the fixation device/triangle, clean the site and then advance the tube 1cm and rotate in a full circle. Pull back the tube until resistance is felt and secure the fixation device/ triangle into the correct position. Check the pH and external length of tube to make sure the tube is still in the stomach.
Advance and rotation of the tube should be carried out at least once a day.
PEG tubes have a fixation device to stop the tube from slipping into the stomach. This is either a triangular white flange with a clasp or disc. Both may require adjustment occasionally so that they sit snugly against the skin, but do not dig in.
To prevent the gastrostomy tube getting tangled up, or accidentally pulled, ensure the tube is taped to the tummy. A close fitting vest is useful in babies & toddlers to prevent them from fiddling with the tube.
17
Can my child have a bath or shower?
Your child can have a bath or shower as normal after 3-4 days. Make sure the feeding port and clamp are closed. Dry the stoma site afterwards. Cotton buds are useful to dry around the gastrostomy
What should I do about medicines?
When doctors are prescribing medication, remind them that your child has a gastrostomy. Tablets may block the tube, so liquid medicine is better. If you have to give medication in a tablet form, make sure they are finely ground, and mixed with cooled boiled water. You can buy a tablet crusher from your local pharmacist to make this easier. Not all tablets can be crushed, ask your doctor or pharmacist for advice.
Always flush the gastrostomy tube before and after the medicine with 5-10mls of cooled boiled water (2-5mls for babies). If your child has a number of medications to be given at the same time you should give each medicine separately – and flush in-between each one.
Note: clarithromycin and ciprofloxacin antibiotic liquid medicine tend to block tubes. Ask for dispersible tablets instead of suspension.
How do I look after my child’s mouth?
It is still important to care for your child’s mouth even if they take all their feeds through their gastrostomy. You should clean their teeth twice a day and visit the dentist regularly.
18
When can we go home?You will be able to go home once your child has recovered from the operation and is tolerating feeds and when you are confident about dealing with the gastrostomy.
You may be given medicines if required for home and a letter for your general practitioner. This letter needs to be taken in to the health centre or surgery. The surgeon may wish to see you in clinic and the appointment will be sent by post. The ward nurses will liaise with the children’s community nurses who will contact you at home.
What support can I expect when I get home?
Your child will remain under the care of a dietitian who will monitor their progress with feeding and growth. The feed regimen may be adjusted as your child’s nutritional requirements change. The dietitian who will provide this care may be your local dietitian or the one you saw in hospital. Your children’s community nurse will contact you at home in the first week of discharge. You can either arrange for them to visit you at home or you can discuss any queries or problems you have over the telephone.
Where do I get equipment and supplies from?
You will be given a seven-day supply of feed and equipment when you leave the hospital. Further supplies will be provided to you either by a home care company, your dietitian or your community nurse. If you have problems getting hold of further supplies please ring your community nurse or community dietitian.
You should remember to order new supplies in good time before you run out and always change your equipment as recommended by your nurse or dietitian.
19
Waste disposal
Used equipment can be disposed of in your normal household rubbish bin. It may be advisable to put syringes and feed giving sets into a carrier bag before putting them into the bin.
Will my child be able to go to school?
Your child will be able to go to school as normal. If the school where your child goes requires any training or education about gastrostomy tubes please inform your community nurse.
What about swimming or PE?
We would recommend that your child can resume swimming or hydrotherapy once the stoma has fully healed, which is usually four weeks after placement of the gastrostomy. For any other physical sport activities make sure the tube is taped securely so it does not get pulled or tugged.
Can we go on holiday?
It is fine to travel with your child. Please inform your Homecare company that you are going away. They may be able to support your travel arrangements and deliver to a different address. However, if your child has complex needs you should discuss your travel plans with your doctor and request a letter at least one month before you travel which states your child is fit to travel.
It may be helpful, particularly if your child has other complex needs, to take a letter from your doctor at the hospital explaining your child’s medical history. This will help you if you need to access medical advice locally.
20
If you are planning to fly to your holiday destination, remember to carry some equipment in your hand luggage, in case your luggage gets lost. You should also carry a letter from your doctor/dietitian explaining that you are carrying medical equipment because of your child’s feeding needs. This should prevent any problems with the airport security and customs. Your Homecare company may also be able to provide advice regarding handling your tube feeds.
Remember to take extra supplies with you in case you end up staying longer than you planned. If you are planning a beach holiday, cover the gastrostomy with a large dressing to stop sand getting into it. Sand can irritate your child’s skin near the stoma site, or cause an infection or damage to the device.
If you want to travel abroad with your child, please contact Patients on Intravenous and Nasogatric Nutrition Therapy (PINNT) www.pinnt.com. They can provide you with information on how to arrange insurance, get supplies abroad if necessary, and other useful information.
Will my child be able to feed by mouth again?
This will depend on the reason why your child needed a gastrostomy. Your hospital doctor and dietitian will give you the necessary advice and support.
What happens when the gastrostomy device needs changing?
PEG gastrostomy tubes last for approximately three years. If you experience problems with the tube blocking or leaking please inform your community nurse. They will then contact your surgeon and make arrangements for the tube to be changed.
21
You can then discuss different types of gastrostomy tube, for example a button. Although if you are happy with the PEG tube make sure you tell the surgeon so that a new one can be inserted.
What happens when the gastrostomy device is removed?
The method of removing the gastrostomy device varies according to the type of tube. Once the tube has been removed the stoma will heal. It can take a while to heal completely, so you may need a dressing over the site. Once the site has healed, there will be a small scar.
Occasionally, the stoma site does not heal completely, and you may need to have the stoma surgically closed. This would require admission to hospital, as a day case, and a small operation under general anaesthetic for the hole to be closed.
If there are leaks of fluid around the gastrostomy tube, • OR pain on feeding • OR new bleeding, • OR the tube falls out,
Stop feed immediately and telephone for urgent advice.
Contact Ward L42 at LGI 0113 392 7442 or 0113 392 7542
! !
22
Your guide to troubleshootingContact community nurse if you have any concerns.
What if ActionMy child feels sick and has stomach cramps and/ or is vomiting and/or has diarrhoea.
• Check the rate of feeding. You may need to slow down the feeding rate.
• The feed may be too cold. Let the feed reach room temperature before giving it to your child.
• If you are using commercially prepared feeds, always check the expiry date.
• If diarrhoea continues, contact your doctor/dietitian/community nurse.
• If your child is still vomiting after you have tried the above, draw off a sample of your child’s stomach contents (you will have been shown how to do this) and contact your doctor/dietitian/community nurse.
My child’s stomach is swollen and hard after feeding.
• Vent (or remove wind) in the way you have been shown.
• Check they have had their bowels open, your child may be constipated.
23
Troubleshooting continued
What if ActionThe pH paper reads higher than pH 1-5.
• Contact your community nurse or dietitian for advice or ward L42 on 0113 392 7442
• The tube may have moved out of the stomach into the small bowel and the tube may look shorter than usual.
• The tube may have pulled and moved into the space between the stomach and the skin.
The gastrostomy tube seems to be blocked.
• If tube becomes stiff to flush or blocked. Flush 10 ml of warm water, carbonated or soda water, push plunger backwards and forwards and squeeze tube. Repeat until blockage cleared.
• If unable to unblock contact your community nurse.
The gastrostomy site seems red or is bleeding, oozing, irritated or swollen and my child has a temperature.
• Contact GP / community nurse
24
Troubleshooting continued
What if ActionThere is leakage from the gastrostomy stoma site
• Test leakage with universal pH paper pH 1-5 indicates stomach contents, if pH 7-8 it maybe a sticky stoma, see infection.
• Protect skin surrounding stoma with soft paraffin ointment (do not use if your child is on oxygen) or cavilon wipes, cream or spray.
• Apply pelican or orabase paste generously around the tube between the skin and fixation disc/triangle.
• If excessive leakage use a keyhole foam dressing (Allevyn 5 x 5cm non adhesive).
The gastrostomy tube has fallen out
• Insert ENPLUG or 7-10cm of an NG tube of the same size or a size smaller, into the stoma and tape in place. Then contact community nurse or hospital for further advice and arrange replacement of the tube.
25
Troubleshooting continued
What if ActionThe stoma is overgrannulated (red lumpy tissue).
• Contact your community nurse to assess the stoma site.
The tube looks shorter and I cannot see the number to measure the external length of the tube.
• Gently pull pack the tube.
• Check position of tube before feeding, test of gastric acid pH 1-5 on pH paper.
Check listsTo be completed to ensure that parents and carers have been taught the appropriate skills, and have been given the appropriate information for them to care for their child with a gastrostomy tube.
Child’s name: ..................................................................................
Date of birth: ......../......../.............
Date training completed: ......../......../.............
Parents have watched gastrostomy videos:
Signed:........................................................... Date:....../....../..........
26
Gastrostomy Teaching (care of button)
Discussion or demonstration by nursing staff
Hand Hygiene
Testing tube position,Aspirating and Ph test
Measure external length
Taping Tube
Flushing Tube
Giving Medication
Care Of Site
Rotation Of Tube
Winding/Venting Tube
Pump training
27
Areas To Be DiscussedTick when discussed
Problems relatedto gastrostomystoma site
Redness
Leakage
Over Granulation Tissue
Problems related to tube and feeding
Blocked tube
Tube falls out
Position of tube
Areas To Be DiscussedTick when discussed
Daily living activitiesBathing
Swimming/Hydrotherapy
Other (Specify)Sport
Your child’s dietitian, Children’s Community Nurse & Children’s Nutrition Nurse must be informed of the size and length of button & type of extension sets used so that on-going supplies can be arranged for use at home.
Tube information record
Type of tubeFrench gauge sizeExternal length of tubepH of gastric contents before dischargeBalloon volume if applicable
28
Notes
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
29
Notes
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
.........................................................................................................
30
Support Groups & WebsitesLeeds Children’s Hospital TV has information videos about the wards, having tests and operations. This will be helpful in preparing your child for admission to hospital. www.lchtv.com
A Mini button instructional video can be found at www.gbukenteral.com/videos/gastrostomy-and-jejunostomy
PINNT (Patients on Intravenous & Nasogastric Nutrition Therapy)
PO Box 3126, Christchurch, Dorset, BH23 2XS
Tel: 01202 481625 E-mail: [email protected]
Website: www.pinnt.com
Facebook: PINNT Twitter: @PINNTCharity Youtube: PINNT
Contact a Family209-211 City Road, London, EC1V 1JN
Tel: 020 7608 8700 Fax: 020 7608 8701
Helpline 0808 808 3555 or Textphone 0808 808 3556
Freephone for parents and families (9:30am-5pm, Mon-Fri)
E-mail: [email protected] Website: www.cafamily.org.uk
Facebook: @contactafamily Twitter: @contactAFAmily
Youtube: www.youtube.com/cafamily
TOFS St. George’s Centre, 91 Victoria Road Netherfield, Nottingham, NG4 2NN
Telephone & Fax T: +44 (0)115 961 3092 F: +44 (0)115 961 3097 E-mail: [email protected] Website: www.kidswithtubes.org
31
Children’s Nutrition Nurses Leeds Teaching Hospitals NHS Trust
With thanks to Enteral UK for the use of their images throughoutthis document
LN004777Publication date
07/2020Review date
07/2022
© The Leeds Teaching Hospitals NHS Trust • 3rd edition Ver 1Developed by: Linsay Rajfeld Children’s Nutrition Nurse SpecialistReviewed by: Jenny Goldthorpe, Lindsey Knight & Helen Brogan Children’s Nutrition Nurse Specialists
Produced by: Medical Illustration Services • MID code: 20200205_058/JG
What did you think of your care?Scan the QR code or visit bit.ly/nhsleedsfft
Your views matter