Now that Reggie has made it through his surgery and is on the mend, I find difficulty in getting him to resume to normality. He saw the doctor on Wed. and the doctor said he could have any liquids that he would like. I have tried to give him coffe (his favorite) lukewarm of course and offered many different things but he refuses. Staying only with sips of water. Is this normal? And how do I encourage him to move forward towards other liquids and soon to be solids? I know alot of it is mental. Any suggestions?

Wonder what his reasoning could be for only sticking with water? He must have something behind that.

Relearning how to live normally again after major surgery can take a long time to adjust. Maybe Reggie isnt comfortable enough with his new changes that he lacks the self confidence to even try. He may also hesitate due to fear of it burning or stinging. I found milk and chocolate milk excellent at neutralizing anything that would burn my mouth. I know he hasnt had radiation but his mouth is still probably very sensitive from the surgery so Im suggesting things like I would for someone who had rads. He may also be concerned about maneuvering his tongue properly.

How about trying to be a bit sneaky about it. Buy several items that you think would be appetizing to him and casually suggest they are there for whenever he is ready. Then leave it up to him.

I would suggest avoiding soda or carbonated things, they can burn. Im 5+ years out from rads and I still cant drink soda which I used to love pre-cancer. Try something like yoo-hoo. That feels very soothing on a sore mouth. I would drink that like crazy when my mouth was super sensitive from radiation. Most of us over 30 would probably remember drinking this as a child so it might do the trick to look appealing to Reggie. Another tasty one is chocolate milk. Many juices are acidic so they can be tricky too. Some of the Minute Maid juices found in the refrigerated section are pretty smooth like berry type juices. Also try some of the more adult type juice boxes like cherry or berry juice. Chicken noodle soup is a great easy to eat food for beginners, or chicken and stars. Canned peaches also are easy to eat and will slide right down.

Good luck and Happy Holidays!!!

Great suggestions above! After his surgery my son started with the chicken noodle soup, although at first he would just eat the broth but the noodles were always there and the day he managed to get his tongue around one noodle and swallow it was a big celebration. I think the chicken and stars might be easier to start with. It just takes trying different things. Maybe you could make a list of the different things you think he might like and tell him to pick one. It is so hard to know when to be tough and when to be gentle, but as a caregiver, I think we need to try different things too, to see which works best. You know him best, of course, but in any case, a lot of praise and encouragement for any progress, no matter how small was always helpful in my son's progress.

Bette

It's possible that Reggie is in better touch with his swallowing ability than his doctor. My Speech Language pathologist (SLP) who also did swallowing therapy told me that many of her patients were only comfortable at first with water. They knew that although it was not apparent that they were aspirating a little and water is the most innocuous drink possible. Once the SLP had done a modified barium swallow test (which requires a doctor's prescription) that showed the mild aspiration, she worked with them to add other liquids.
If nothing else, getting that doctor to prescribe SLP sessions and a MBS may yield the best results in getting Reggie back to normal. A good SLP knows how to motivate and help people start swallowing normally and has seen all the issues.
Just my two cents
Charm

Thanks everyone. Reggie is seeing an SLP and because he still has so much swelling in the tongue and the throat she was pretty content with sips of water. I just don't want him to become complacent and hurt his chances of regaining the apropriate abilities. My goal is always the long term outlook. My husband can be very stubborn and needs a bit of a push. I just don't want to push too hard and he digress. By the way, still no word on the path report. It's back but the MO is gone til the first of the year. We just aren't thinking about it.

As long as Reggie is sipping water then he is keeping the swallowing muscles active. Even if its only water, he is at least still swallowing.

Glad he is seeing a SLP. That will be a big help!

Bette, I understand your concerns. I think with your continued encouragement and some cajoling Reggie will move on.
Is he willing to try juice of some kind?
Kris would only drink thin liquids. Water, fruit juice to begin with , then he wanted coffee . Then he started to drink his nutritional drinks (Fortisip) rather than use the PEG. Reggie needs to be comfortable with his swallowing before he will attempt other things. Kris worried about dribbling and he often felt that his oral cavity remained "full". It wasn't of course , I needed to get a mirror and make him look in his mouth for his brain to recognise that there was not anything left.Remember with all the surgery sensation will be quite different from what it used to be for Reggie. He needs to train his brain too.
Bette, I think all we as caregivers can do is go slowly. Provide lots of gentle encouragement.
Kris is finding it impossible to move on from thin liquids when I know and the SLT has confirmed that he is able to swallow thicker consistencies. The man swallows his medications! I understand your frustrations.
How is Reggie getting his nutition? Does he have a PEG? Perhaps he could start some sips of this fluid. As long as he is meeting all his nutritional needs ,let him go slowly for a while with the oral fluids. However do ensure that he is swallowing. Practice makes perfect.
Try not to push too hard. Reggie will move on when he is ready.
Tammy

Tammy,

Reg has an NG tube but because the swelling is so bad the docotr now wants him to have a peg tube. We hop to have that placed this coming week or next. I know his nose is really bleeding alot, both down the back of his throat and out the nostril. I have put some gauze there but it is just very sore. I am making sure he is getting 2500 calories and 48 oz. of water daily. Plus the little bit of water he is sipping. Right now he has a pretty bad bloody irritation above his stoma where the lary tube is cutting into to the swollen tissue. The doc is aware and says the skin is just pissed off and it will get better. It's alot of work to keep cleaned. But I'm managing. Today he seems pretty discouraged so I just let him watch his sports and don't push.

Bette, i sure know how you are feeling. There is so much to cope with .
I think Reggie is doing really well. Just encourage him with the water for the moment to keep those swallowing muscles going.

Press the docs for the PEG if you have to, to get it sooner. I can't imagine how awful the NG tube is with all that swelling going on.

Are you able get some sort of protective dressing to put on the skin where the lary tube is pressing? Something that will relieve the pressure of the tube on the skin.

I think that once the NG is removed and nothing is then pulling on his nose, Reggie will feel much more comfortable and much better in himself. One less piece of plastic in the naso pharyngeal area will also help the swelling.

Patience. Get the PEG and use that for his nutritional needs.

Allow time for the swelling to abate.

Gently encourage him with thin liquids. Reggie won't be able to move on until healing had occurred.

You are doing a wonderful job Bette,
Tammy

Hi everybody,

I have a new issue. I am trying to sustain a 2500 calorie nutritonal intake and a 48 oz. hydration. I am not quite able to get all of the hydration consumed. After 36 oz. Reg seems to start spitting up. I have tried different intervals and not hydrating at the time time of nutrition. But by thend of the day, say 7 pm he just can't take anymore.
Should I try the remainder ofthe hydration in the middle of the night while he is asleep?

Once he has the PEG tube, it will be a lt easier. Each 259 ml can of formula counts as 200 ml of fluids. Yu will also have to flush the feeding tube before and after the formula, and that can easily be another 240 or 180 ml of fluids. If he takes six cans of formula a day, he will easily exceed the 2 liters he needs every day. This is the plan John's dietitian has worked out for him. We have been doing this for the last 3 weeks and John has been able to maintain his weight except for the couple of pounds he lost when he suddenly developed thrombosis. The dietitian advises against drinking too much plain water as it will cause an imbalance of the electrolytes in the body.

What are you using to reach the 2500 cals ?

Try reducing the amont of liquids during each consumption, but increase the frequency, sit up while drinking, do not lay down for an hour after, when getting fom a lying position, do it gradually. Sip liquids often through througout the day. Maybe a straw will help prevent big gulps. I had a peg tube, and think that helped too. Oxycodene makes me vomit, so I switched to a Fetynal patch with better results. Actually, the body needs more liquid hydration, which should be about half a persons body weight in liquid ounces, and 20 percent through foods, but understand the difficulty. Caloric intake varies too, and there are different baseline formulas to calculate, some online, and protein needs too, which sometimes can be as high as 1-1.5g protein per pound of body weight depending on caloric need, activity, infection, surgery, active cancer, nutrional status, etc which can increse the body's requirements. Too little protein delays healing, inability to fight infection, and too much can put stress on the kidneys, and actually cause dehydration. Here is one calculatore from the USDA for healthcare professionsals for an estimation.

http://fnic.nal.usda.gov/fnic/interactiveDRI/index.php

I hope you husband feels better, and happy holidays.

Reg is on Nutren 2.0 by Nestle. It's very dense. 500 calories per 250 ml. 16% protien/ 39% carbs/ 45%fat. I'm just wandering if some of the nutrition should be counted as hydration. I may be overy hydrating him if it is.

Bette

Once again I am going to give my standard contrarian advice but only because I think you are being needlessly frightened and worried by a common myth..
I know all the doctors, the OCF posters, even the OCF website and the linked articles repeat the tired old never proven myth that you need 8 glasses of water a day. What I found amazing was that when I asked my doctors and even when I looked for citations on the OCF web site, all I got was : well that's the general advice. How about a study? How about clinical trials or proof? How about any type of medical evidence whatsoever?. Nope, none they sheepishly admitted. Plenty of articles repeating the canard, but none with proof.

I used to link to the 2005 Snopes article 8 glasses water myth I prefer to use the 2011 clever Mother Jones article instead on the 8 glasses myth: Return of the 8 glasses myth

For lots more, just google : 8 cups of water myth or use the handy dandy link below
Let me google that for you

There is lots to worry about but the water myth is not one of them. check his urine, that's what counts.
Charm

The canned drink can be counted, but to what extent I dont know, and may not be totally equivalent. I know liquid intake in general should be 80 percent liquids by mouth, and 20 percent liquid through food in a perfect world, and someting is better than nothing, but doubt you are over hydrating him, if consuming 48 ounces is difficult, vomiting, and just using protein drinks. My intake should be 16 cups daily, which equals 128 ounces, according to this calculator. I usually went by half my body weight, 180 lbs (90 ounces) plus factor in food by 20 percent, which is almost the same. My glucerna 1.5 cal is 8 ounces, so x that by 6 daily is only 48 ounces, so 80 ounces is still needed to be consumed, but needs are different due to activity, health status. The 500 calories x 6 is in the range, which needs generally vary from 2500 -3000 or even higher. Maybe see the nutritionist at the hospital, who can advise best.

I can't do the math but I did ask the dietitian and she said the supplement counts as fluid. An RN at the hospital said 250 ml (1 cup) is counted as 200 ml. Being the exacting type, I have also checked with the RO and he said 6 cans of Nutren 1.5 is enough for John who is about 195 lbs in terms of both calories and hydration. If your husband's urine is a dark color, then he might be dehydrated, if it is normal-looking, then he isn't. That is what the RO said to use to check for dehydration. Hope this helps.

One more thing, practically all the nurses, doctors and the dietitian have told me that the fluid intake should be between 2000 to 3000 ml a day.

Also another quick hydration check method is to pinch and pull the skin up on the back of his hand and then let it go. If it flattens back out then he's OK but if it kinda stays upright then he's dehydrated.

Okay all great advice. His urine output is good and the color is light. I checked the skin and that's okay too. So you are probably right I am worried for nothing. Thanks again everyone. Merry Christmas

Several years before I got cancer, I became very ill. I had been sick for a few days and was getting worse so my friend insisted he take me to the ER. My fever was 105 and I could barely walk. After days of testing the docs finally found out what caused me to be so ill. I was severely dehydrated due to not drinking enough water. I had a bladder infection which went unnoticed and it turned into a kidney infection which was trying to shut down my kidneys. I was told if I hadnt gone to the ER when I did, I probably would have died in my sleep that night. I still remember having several conversations with doctors and nurses about how much water to drink per day. This was years before cancer and I loved to drink my coffee, iced tea and coke. That was about all I ever drank. If nothing else, from this experience I learned that every single person needs water to drink every day even if they are getting fluids from other liquids. I had always thought I got water from the other beverages I drank but I learned that you still need plain old water too. How much? ..... thats another questions that greatly varies.

Even with taking 6 cans of formula every patient still should be drinking a few water bottles a day. This is especially important to flush chemo out of a patients body. Also if a patient has any kidney issues extra water is a necessity while going thru treatments.

Bottom line.... when in doubt check with the doc, the nurses and/or a dietician. By asking each one you can see how different their answers are.

I can read your frustrations, and agree with ChristineB, and was in a very similar situation, even while being treated in the nursing home with adequate daily peg feedings by staff, my kidneys almost shut down due to infection, dehydration and almost went on dialysis, creatinine was 6.5, but still had good output, color. My family called 911 due to my feelings, weakness, although resident dr there said I was ok, and wound up in the hospital for 21 days, lost abilty to walk again for the 2nd time, and doctors in hospital again thought they were going to loose me. I have chronic kidney disease now, partly due to this, and creatinine is still high, but leveled off to a steady 2.4. Lack of nutrition and or Dehydration is serious business, and can be deadly.

Completing full treatment without interruption should be taken seriously as trying to cure this disease, not as prevention, and an unknown primary sometimes has a lesser prognosis than other primary cancers, but HPV helps increase the odds, but still can be deadly. The RO is correct that missing radiation each day amounts to 1 percent for each day, and this is due to the cancer having a chance to repopulate. Actually, the effectiveness of radiation decreases after the first 2-3 weeks, so they use different boosts, fractions, and other techniques to help this, so not missing any more is encouraged.

Hi everyone,

So I think I have Reggie's feeding and hydration under control now. He seems to be tolerating all very well now and am able to keep up with the standard 2500 + 48 oz. protocol.

I now have a new concern. Today he is 2 weeks out of the hospital and 23 days post op. I can't get him out of the recliner. He gets up in the morning around 6:30 am and moves to his recliner where he spends the majority of the day sleeping. I understand that Reg is 66 and had major heart surgery just 61/2 mos. ago., but I am trying very hard to get him to get up and move and walk and shower, etc. It's very frustrating that I can't.

2 yrs. ago I had a liver transplant and I made myself move and walk and get back to a normal routine even though it hurt and I didn't want to. I wish Reg had my fortitude. What am I to do????

Bette - Maybe someone else will have an idea here. I haven't had your or Reggie's experience, but seems to me that a little exercise, starting slow would help. Has his doctor said anything about how soon he should be resuming some activities? And if it's ok with what he's been through? Maybe your excellent care has made him feel so much better, he just wants to relax and enjoy it a little before doing very much. How is Reggie's mood? Does he seem positive in how he feels? Maybe if you check with the Doctor and get his take on it, you might be able to pass this on to Reggie with something like "well, the doctor says . . . ." so that someone else is making some suggestions for him to consider. You really have done an amazing job with his hydration and feeding so pat yourself on the back for that!

Hi Bette, if you are anything like me you are probably thinking that his lack of activity is an ominous sign.
It's not. I think Reggie is just tired and needing encouragement and motivating. I would nag Kris to do more, and tell him that he would feel so much better for a bit of exercise. I would make Kris get in the car and then take him to the beach or park. Initially he could barely walk 100 metres. I just kept taking him and each time stretched the walk out further.
Of course all this made him so tired he needed a sleep when we returned. I think all this is part of the recovery. The body needs to sleep to heal. It also needs exercise to help both the muscles and the cardiovascular system get stronger.
Keep encouraging and trying to motivate him. Remember it is still early days. At Reggies next Drs visit bring up the subject of physical activity with him and the 3 of you can discuss this and the benefits this will give him .
it is still early days Bette. Maybe just a walk around the garden to start with .
Thinking of you both,
Tammy.