Once we've learned how to manage Samuel's catheters, it will be time to learn how to give his nutrition intravenously (TPN) at home. There are about 10 families in New Zealand with children living on TPN, so although it will be steep learning curve initially, we know others have managed to get the hang of it with close support from the hospital and the TPN supplier.
To give us something to look forward to, we've booked a week's holiday this summer at a holiday home at a nearby beach north of Auckland kindly made available to families such as ours by the Immune Deficiencies Foundation of New Zealand IDFNZ www.idfnz.org.nz . The thought of having Samuel at the beach and outside of Auckland is beyond our ability to imagine right now but we have the faith to believe that by January 2010 it won't seem such a big deal.
Good night all