Nearly there...

We should be going home the week after next :-) :-) Wills is soooo much better after his op. He is still pouring out way too much from his illeostomy. Some tests suggest he may have a complicated storage disorder - his cells don't store some of the nutrients they should and so they leak into urine and into his bowel. This could be causing his "leaky bowel" and inability to absorb in the gut, as well as neurological problems. He needs a skin and bone biopsy to clarify the diagnosis. We have been trying to get the neuro team to see him for the last 2 months (his consultant and reg left at same time so he slipt though the net a bit) and they finally caught up with us yesterday and said the biopsies were needed. Doh, could have got them 2 weeks ago if they had actually spoken to the gastro team and surgeons. The NHS still struggles with multidisciplinary working. The neuro reg also said Wills needs urgent physio while he is in as he loses function when he is ill...I asked for that on his first day in... Oh well. Things are coming together. Wills is back to 20 hour TPN and fluids for the first time in 2 months and we can take him out during his 4 hour break. He can also toddle free of lines for the first time in as long. I can't wait to get him out of here later this afternoon :-). If all goes well with stabilising him on his TPN we should be home the week after next :-) :-) I can't wait for us all to be home together again.