Just a quick note to say we got home .... 3 weeks after we went in. Sam still has a long way to go, but general consensus is that it's going to be a really slow process of increasing his feeds.... He is clinically well so we have escaped home for a couple of weeks of normal life before heading back in to try and increase his feeds again. So he is now only on 5ml/hr x 20 hrs and back to 7 days full TPN. Part of his bowel is very narrow, but the teams are hopeful that with time, a little milk and gastric juices flowing through it could stretch and develop.
So we are adjusting back to life at home and he is very excited about going to kindergarten tomorrow!