| Joined: Apr 2014 Posts: 18 Member | OP Member Joined: Apr 2014 Posts: 18 | My father had his mandilblectomy 6/13. He was released from the hospital yesterday. He is always feeling sick and vomiting. So he is refusing to do a feeding or take water. He has not had water or food for the last 10 hours. When do I need to force him or take him back to the hospital if I cannot force him?
daughter of George: stage IV squamous cell diagnosed 12/18/13 double bypass 4/25/14 mandiblectomy 6/13/14 released from hospital 6/25/14 to return 6/27/14 radiation to start 8/25/14; only had one treatment currently in a nursing home Passed away Dec 25, 2014
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Keleigh what is stopping him eating? Is it the nausea? Or pain? Both are treatable medically, the doctors can help with that. Ask him what he wants to do, he has to get some calories down sometime. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Apr 2014 Posts: 18 Member | OP Member Joined: Apr 2014 Posts: 18 | He simply refuses. It is like he has already given up. I just do not know what to do. He says the feedings and water are making him sick but he needs them to gain strength so he can heal.
daughter of George: stage IV squamous cell diagnosed 12/18/13 double bypass 4/25/14 mandiblectomy 6/13/14 released from hospital 6/25/14 to return 6/27/14 radiation to start 8/25/14; only had one treatment currently in a nursing home Passed away Dec 25, 2014
| | | | Joined: Apr 2014 Posts: 18 Member | OP Member Joined: Apr 2014 Posts: 18 | He is being admitted to the hospital again. His feeding tube is infected. He has a fever of 101, pus, redness, vomiting. Chills. He also fell this morning from being so weak. He tried to hide that piece of information.
daughter of George: stage IV squamous cell diagnosed 12/18/13 double bypass 4/25/14 mandiblectomy 6/13/14 released from hospital 6/25/14 to return 6/27/14 radiation to start 8/25/14; only had one treatment currently in a nursing home Passed away Dec 25, 2014
| | | | 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 | Im so sorry to hear this! He must feel terrible! I was admitted a couple times for malnutrition and dehydration. I was certain I was in the process of dying. It took me a few days before I began to feel better. Being a caregiver for a stubborn patient is not easy! At some point, the patient MUST take some responsibility for their own care. Its not fair to the caregiver for the patient to be 100% dependent upon them for everything. The daily intake must be at the very least 2500 calories and 48-64 oz of water. This is the bare minimum! OC patients can take many more calories daily without gaining anything. Their bodies have been thru so much that calories are burned up at an incredible rate. For any patient who is struggling with their intake during recovery, they should push themselves to take in at least 3500 calories daily. Here is a recipe for something I used to make and drink when I went thru treatments. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate. Easy to Eat Food List (All measurements are estimates) Giant High Calorie Choc-Peanut Butter Milkshake3 or 4 cups chocolate ice cream (regular/full fat type) 2 tablespoons peanut butter (smooth type) 2 tablespoons chocolate syrup 1 or 2 cups whole milk (can substitute half and half to add even more calories) 1 scoop carnation instant breakfast 1 scoop high protein whey powder (check with doc if this is ok) Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you. Best wishes!!! 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Is he not eating because he feels nauseous? Do talk to the doctors about it. There is medication that can alleviate the nausea. It is important to keep the insertion site of the PEG clean. He should be changing the dressing and cleaning the site everyday. Ask the nurses at the hospital to show you how it should be done. John does a saline soak of the site three times a day and covers it with a barrier cream called ProShield Plus. Then he puts a drainage sponge (a dressing with a slit in it) on it.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2014 Posts: 18 Member | OP Member Joined: Apr 2014 Posts: 18 | He cannot keep anything down because he is vomiting constantly. He was admitted to the hospital 5 miles from home last night. He was refused help there when he found out he had cancer so he hates that hospital. He is now demanding to be released so he can go to the hospital that did his surgery, 3 hours away. I cannot do this.
daughter of George: stage IV squamous cell diagnosed 12/18/13 double bypass 4/25/14 mandiblectomy 6/13/14 released from hospital 6/25/14 to return 6/27/14 radiation to start 8/25/14; only had one treatment currently in a nursing home Passed away Dec 25, 2014
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | One option is to Baker Act him for 3 days and keep him there.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Keleigh whatever works. If he needs to go to a particular hospital or eat a particular food or drink, you have to accommodate as best you can. Remember its extremely frustrating for the patient as well. Every time he tries to eat something he loses it, it quickly gets to the point he will get scared of eating.
He must know in his own mind he needs to eat to survive. If he doesn't come up with an answer he'll get one he doesn't like, the PEG tube up the nose which introduces a whole new set of problems.
I can't speak for your Dad but in my case I was facing the PEG and it scared the hell out of me. I knew if I didn't get those Resource drinks down I was never going to hold weight and the PEG was inevitable. The fear of the PEG drove me to force down those drinks, and I adjusted the meds until I could keep them down.
The practicalities of which hospital is and isn't suitable will work itself out. He will have some practicalities forced upon him by doctors, but the most important battles are in his own head, and I found that to be the toughest battle of all.
Stick with it, you are doing an amazing job! Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Pain meds like oxycodone made me vomit, still does. Had anti-nausea meds, but it was a viscous cycle. After I vomit I do not want to eat for hours, and had a peg tube too. The tube infection has to be cleared up with appropriate meds wether it be for a fungal or bacterial infection, and kept clean, as Tammy mentioned. I was prescribed Bactrim ointment for a bacterial infection, and clotrimizole ointment for fungal infection, difficult to differentiate. What cleared it last time was IV antibiotics for pneumonia I was on. You don't want it to go systemic.
Good luck
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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