hiya thanks for the replies. what issues did you have with the TPN? he will be admitted to our local hospital then be transferred to the childrens hospital for his op.he was already an inpatient last time and i know what you mean about them leaving it until they have to do it as an emergency.it was cancelled for today as the surgeon had a bereavement in the family so had to have time off.we've been told he is on the urgent list so shouldn't wait too long for another date.
he is aspirating his own secretions so they don't know if TPN is going to help anyway.is on more antibiotic to try and clear his chest as that will delay surgery even more!
on the plus side my daughter and i had a lovely morning yesterday making banana muffins and scones so i thnk im forgiven!

TPN is a chemical so its never the best choice unless its needed, long term it can cause permanent damage to organs (very unlikely short term) it also means a Central line, usually a hickman. jacob cant fight off the Staphylococcus bug which is the most common type of infection in central lines so he had 4 lines in a space of 2 months, i think some children who have them for chemo manage to keep theirs for over a year so this is quite rare. the main side effect is weight gain that is too rapid and can put strain on the heart, thankfully this never happened to us but they will check regularly to make sure.
i assume they're worried that the aspirations are from reflux and thus cutting out any oral feed would prevent this from happening, personally i'd rather go down the nasal jejunostomy route first (we did for a long time prior to the TPN. its very effective and has a much lower chance of complications.
also are you getting lots of chest physio in, sounds simple but we didnt do any for the first year and since jacobs physio showed us how to do it, a couple times a day have made a huge difference.
your little mans story sounds very similar to mine lol.
glad you managed to have some fun with your daughter, my older son was the person most affected by his bothers issues, he was unfortunately neglected (myself and jacob spent 18 months in hospital 200 miles away). completely unintentional and sometimes you just have no choice. if it gives you any hope 3 years on he is much more settled and enjoying having his brother home to lay with :-)
carrie x

hi logan_jacob_mummy,we have tried an nj tube he continues to reflux bile.
we do chest physio twice a day followed by suction to try and clear his chest,his big problem is he has no cough reflex,so in all just sits there and festers!
his consultant at our local hospital seems most concerned with getting some weight on him,whereas i want him healthy(ish!) and bless him he doesn't get a chance to get used to anything before we're switching it all around again.he can't have TPN either at the moment due to his chest so we are back to continuous feeds,antibiotics and IVs.
glad to hear the siblings don't hold a grudge,my daughter has been really playing up recently,i think its because she hasn't seen alot of mummy this past year.thanks for the advice.xx