| | Joined: Jan 2010 Posts: 20 Member | OP  Member
Joined: Jan 2010 Posts: 20 | Oh thank you so much David and Christine! It is so wonderful to have you (and this forum) as a resource.
Things have changed fairly rapidly around here in the last 2 days. Roy became really fussy about using the PEG and also wouldn't eat or drink anything, so he basically began to dehydrate and starve himself. I got extremely upset and called both the MO's office and the dietician that we were referred to because I could see that he was feeling very sick, and he wouldn't listen to any of my pleading.
Thankfully, he was seen by the dietician today, and she got him all straightened out. She recommeded a gravity feed with Osmolite, 6 cans a day. She also told him he needed 64oz of water a day as well, and gave him the reasons why. (Which I had previously explained to him) For some reason, he listened to her and became compliant. So after allowing us to feed and hydrate him, he is feeling much, much better! Yay! It seems that using the bag instead of the bolus is a lot more comfortable for him.
I can't tell you how relieved I am. Bless his heart, I don't know why he had to make this so difficult!
Thanks again for being there... It makes such a difference.
Laurie
Wife (48) to Roy (52): He is a non-smoker, non-drinker, computer business owner, country musician, Dx 11/15/09 Stg IV SCC of right tonsil, T2N2bM0, had ND and tonsillectomy 1/8/10, Port 3/11/10, Peg 3/16/10, Erbitux, 33 IMRT, finished treatment 5/5/10
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 |
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Laurie, Im so glad your husband finally listened and is helping himself by keeping the fluids and nutrition up. I was in that same cycle a couple times and ended up being hospitalized. Keep up the good work with this. Being a caregiver is a rough job, hang in there 
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Isn't it strange that a spouse knows nothing? Then someone else says the same thing and it becomes the gospel. You are doing a great job. One day he will thank you and maybe even appologize for being a hard head.
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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