I was so relieved to hear that they may have found the source of his unhappiness and decline the past month or so - it seems part of the balloon and tubing was too far up the channel between the stomach wall and external skin. This was causing the channel to become a bit infected, hypergranulating and actually starting to rot a little. So the hypergranulation we saw on the surface was really only the tip of the iceberg. So they cleaned out the bad tissue, cortorised it and then put a new GJ in. Normally he has had a 30 cm tube in, but it was replaced with a 22cm one in the hope that possibly some more upper bowel could be stimulated and may work, although there is a fear that if it doesn't this milk will just reflux back into his stomach.
It was decided it was best to keep Sam in for the night, but thankfully he had a great night. The G port is on free drainage to keep pressure off his stomach to hopefully aid healing. The contents of this do look suspiciously more milky than normal, so I do think the shorter tube isn't quite making the grade, but will leave the Drs to interpret the numbers (am weighing all out/in puts) and update the plan on Friday when Sam has to pop back to Starship for a review. But he has been really happy and no problems today. We escaped Starship about 9.15 am and went straight to Greenlane Hospital for Sam to meet a General Paediatrician. As Sam is so complex with so many sub specialities it's been decided a co-ordinating GP would be a good thing. So after Sam met his new Dr we got home about 12, unpacked the car/stuff/meds etc and off to school run.
We know it's not going to be a quick fix, as it will take time to heal and secure around the tubing, but we're relieved it's not a new horrible thing to deal with.