On the 12th of November after a long wait and lots of consultations finally my daughter went in to get a PEG tube inserted for extra feeds and hydration (and medications).
After what started as perfectly routine surgery has ended in a nightmare. The PEG insertion went great - the next morning she was feeling and looking fantastic. After a small incident (where the peg was hooked on something) she developed a peritonitis infection requiring emergency surgery and ICU for 5 days. We eventually went home after 18 days in RCH. 8 Days later after the antibiotics finished we were forced to return as infection had come back. After a 5 days stay and more IV anti's followed by oral anti's we went home.
Only to come back after 3 days at home due to puss in the surgical wound and pain using the PEG. Yesterday afternoon she went in for a CT scan under GA only to discover the PEG has slowly dislodged itself over the last few weeks.

At 10pm last night they took her back in for a second GA in 12 hours to remove the PEG.

I am so devastated at the moment, after everything she has been through in the last 5 weeks all we have to show for it is two surgery scars and she is at least 4kg lighter then the first admission. She has been put through so much and it has amounted to nothing, this has screwed around with her health and now I have to take the risk again if we decide to go ahead again once she heals.

I thought by doing this it would improve her quality of life and so far all it has done is hurt her even more.

Sjl