Just discovered another way to put our troubles into perspective. I joined the G-tube listserv mentioned by a poster here and the stories of all the moms with their little children on PEG tubes is heartbreaking. These kids range from new born to 17 years old and unlike the majority of posters here, the PEG is permanent. I know we have it bad, but imagine how hard it is if you are a caregiver to a child who cannot even talk to complain about the PEG or understand why they have one.
Sad to say, the list posts there show that there is a system wide failure of the medical profession and hospitals in providing any real follow up or care to PEG patients. The paradigm is that it is a complication free procedure which of course is a big fat lie. I thought that the recurrence and surgery which left me a lifetime PEG person were bad, but it pales in comparison to the heartbreak these mothers endure.
Just a thought
Charm