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BOBBIES GASTROSTOMY
This page has been added to give parents some idea of what to expect should their child need a gastrostomy to help with feeding. It is hoped that the pictures and text will help take away some of the uncertainty and also answer some of the questions which would naturally arise.
As parents of 2 children with Battens disease and knowing that the disease takes a slow grip on children we were warned that the kids would need help with feeding. Bobbie is the eldest and prior to the operation we used to blend food so that she could swallow it. This process usually took between 1/2 an hour to an hour to give her a meal. Some days it was easy others she seamed to take forever which was frustrating. 5 days before she went into hospital she stopped eating altogether, the only thing we could get down her was a calorie enhanced drink, but only in small amounts. She isn't a very big child to start with but she quickly lost weight and by the time she went into hospital she weighed around 2 stone or 13kg. 4 weeks on she had put on nearly a stone and weighed in just short of 3 stone or 17kg. Below are some pictures of her tummy and the overnight pump we use for her bulk feeding. I hope I have managed to answer most potential questions but if you have any more please e-mail.(see home page)
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Bobbies feeding tube
This picture shows Bobbies tube in position. After the operation the nurses put her on a small feed continueously and then increased it gradually so her stomach could get used to the quantities. She had no adverse reactions to this and quickly started to put on weight. She spent 5 days in hospital, the operation took about an hour. The doctors put a small torch down her throat and when it reached her stomach they could see the light on the other side and so knew where to make the small incision for the tube. |
Bobbies tummy |
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Tube without the clip on, during daily cleaning
Cleaning is a daily ritual that needs to be done. The tube needs to be pushed in and out slightly and turned through 360 degrees to stop the disc on the inside from sticking. A supply of cotton wool and tape is all that is needed, although we use some medical swabs to get the tapes sticky stuff off more efficiently. Cleaning takes about 3-4 minutes and causes Bobbie no stress at all. |
Only a small incision |
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Bolus feeds (small daily feeds so Bobbie doesn't get hungry)
Feeding is now so easy, we feel we should have had the oiperation earlier, although we could still feed Bobbie orally if she would still eat, but she isn't interested in food now.(probably Georgies cooking). She does still have a small drink of juice given with a syringe.
Feed comes in 500ml packs and 200ml bottles. During the day Bobbie has 3 feeds of 100ml each. These are given using a large open ended syringe and just lettin gravity do its job. 100ml feed takes about 3-4 mins to give.
At night Bobbie gets a large feed of 800/1000ml of feed. This is given by a small pump which you have only to set the flow rate over the period of time she will be in bed. The pump does the rest, and has warning beeps if there is a blockage etc. ALL IN ALL WE THINK THAT OUR LIFE AND BOBBIES HEALTH HAVE BEEN GREATLY IMPROVED, AND WE WILL HAVE DANNI'S TUBE FITTED AT AN EARLIER STAGE. If you have any other questions please e-mail to dannibob@tesco.net |
Feeding now takes 3-4 mins |
