Hi Ruby

My son is currently on parenteral nutrition but he also has a transgastric jejunostomy.(pegj).  When we were using the pegj to feed him we had a portable pump and backpack.  Your nephew's family should be able to get one from the homecare company that provide the feeding pump and the feeding sets.  It is best to get one from them as it will be designed to fit that particular pump. 

We had a fresenius kabi pump but there are also ones by Abott and Kangeroo.  I would get your family to ask whoever supplies the feeding bags and syringes.  Tell them to tell the company that he is only 4 so will need the smallest one they do.  We had a really big one sent out initally which was about half the height of Ben.  You can adapt children's backpacks by cutting a hole for the tube but the proper ones have properly moulded parts that support the pump.

If you get the pack then it can make such a difference in terms of getting out and about and for independence for the child.  Are you looking into getting a statement for help at school as if he will be on the feed during the day you will need someone trained to look after the pump.  If your nephews problems are of a medical nature only then you can avoid the statement process and ask for exceptional medical funding.  It varies from council to council how good they are but we are lucky here that they are being supportive.

If you want to get some more information on tube feeding issues there is an american site called parent-2-parent.com that has a whole range of forums and one dedicated to tube feeding issues.  I have found them very helpful as although I know quite a few families with gastric tubes I didn;t know any with tubes in the bowel.  Another UK based group in pinnt.com. 

Please do ask if you have anyother questions. 

Good luck

Helen