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.
oh no i'm so sorry to hear that. my dd was on NG feeds for months and we narrowly avoided a PEG. My best friends son was in theatre today getting his peg changed from the long tube to the button. did your dd have the long tube or straight to the button? They had a lot of trouble over the last few months with leaking, broken down bleeding skin, puss in the wound etc....hoping the button goes ok for them. big hugs to you. are you looking at getting it re done next year?
Thanks guys, She is doing really well now (although we are still in hospital).
Ellasmum - she had the long tube (all PEG's start out as a long tube until the body heals enough for the MicKey button) At this stage we will be starting again next year once she has healed from this one. I have had a lot of conversations with the surgeon and gastro doctors and think it will be best to go again - they said the issues she has had are both rare complications (the surgeon said he has never seen the PEG dislodge itself in his time as a surgeon) They also said that the dislodgement was most likely caused by the peritonitis - it was her bodies way of fighting a 'foreign body' so to speak.
Next year is a new year and we will see how we go then.
PEG Surgery gone bad
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That is such an ordeal for you all. I hope that she heals just fine and the infections don't come back 
I'm so sorry it didn't go well
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