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#110415 01-15-2010 09:58 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Tha is a sad tale Charm and I am glad you posted it. Poor lil guys anyway. I'm no candyass, but some stories put tears in my eyes. This is one of them.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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