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?