| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Linda
Excellent manual from down under. My only quibble was it's warning in bold [quote]Do not put pureed food down tube. Only put prescribed formula down tubes[/quote] As my little column in the Post described, using properly prepared real food is a godsend if your PEG is not just temporary. Plus I can't help but wonder if the liquid nutrient is so great, why don't hospitals just close down their cafeterias and food services to save money and just provide Ensure to everyone since most patients are in for a week or less? 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: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Christine,
When Carol was in the hospital a couple of the nurses would pull and yank on the tube. I told them to quit doing it but they looked at me as if I didn't know what I was talking about! If Carol hadn't been so doped up she would have swung at them. LOL
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Charm,
LOL. Could you imagine if they shut down the cafeterias and have Ensure vending machines? Someone would be jumping on the bandwagon patenting recipes and the like for tube patients! The medical profession is always touting proper nutrition, why not proper nutrition for people that can not eat orally, temporary or permanent?
I still don't understand why there is so much indifference from the medical sector in regards to feeding tubes. A patient finds out they need one, have it placed....bye, you're on your own.
Using "prescribed only" formula is a cash cow...and many institutions still use the smaller tubes. Making it impossible to get pureed food down without clogging. If they went with larger tubes, ie 18fr, for adults, pureed foods would be practical. Shands-Jax standard size is 18FR, they realize the problems with smaller sizes and understand patients may want to use other foods besides the formulas. That's the sense I get from the Drs. anyway.
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Linda, poor Carol !!!!! No wonder she had problems. Its amazing how some medical professionals are so wonderful and on the ball and there are some so ignorant. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Linda
It's so hard to get comprehensive information on HEN. (I like that acronym) For example, lots of internet sites extol the "button" or flat feeding tubes made by Bard or Mic-key, yet the anti leak valve in the buttons is only 12 FR. Likewise almost all extender tubes are only 12 FR. I finally got a 16 FR G tube which handles the Vitamix food pretty good even with the narrow 12 FR extender and since it's larger than the extender tube, it does not clog very often. I am learning piece meal by cross examining each doctor that puts in a new feeding tube for me. So far I am on my 4th g-tube since March 2009 and next one scheduled for end of August, beginning of September. 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: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Yeah, Carol has the mindset of "I've told you once, I've told you twice" do it one more time and you're mine. Then she'll say "I told you". LOL
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Charm
I didn't know the 16 FR would work that well with pureed foods. You definitely have been experimenting and making it work for you. Good info to know and to keep in the back of my head just in case. Keep grilling the Docs, they may learn something from you.
The adage of "the patient is their own best advocate" rings very true.
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | Joined: Jun 2010 Posts: 18 Member | Member Joined: Jun 2010 Posts: 18 | Hey Charm,
That chart is a font of information! Wow...why don't they give that out to all of us who go home from the hospital with the patients who have had a PEG tube placed? Thank you so much!
Susan
Primary caregiver to 78 yr.old father w/Oral Cancer SCC Tumor found May 2010 Left side back of tongue & up into ear canal opening Biopsy June 3rd 2010 Diagnosed May 2010 No Surgical Removal (As Yet) Tx 7 weeks (35 Days) of Radiation & Erbitux infusion 7 weeks to run concurrent w/the radiation
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