At the hospital

DrMary

arndog64 said:

I agree with everything you
I agree with everything you just said. I beleive the reason he is not eating is because everything hurts. He said sitting pain is at 4 but when swallowing he is 8. He took a bite of mashed taters the other night and it hurt his tongue so bad, he did not take another bite. I beleive he is weak. He said he gets winded walkingto the restroom in our house. He is stubborn and thinks he is being a sissy if shows any sign weakness. I swear you men and your egos..LMAO!!!

Mashed potatoes are like sandpaper
to a sore throat (all those little starch bundles are scratchy) even though we "normals" think of it as soft.

You're looking at a month or so of liquids, so get good with the blender. Smoothies might also be too abrasive (cellulose from the fruits and such) - Doug really did go weeks on just Boost Plus and milkshakes (Carbogain, whey protein, milk, cream).

Some artificial flavors might also bother his throat. Doug finds the CVS generic of Boost Plus makes his mouth itch, but the expensive Nestle stuff doesn't (naturally). Stevia in one of the milkshake powders did the same.

But, let go of the idea of "eating" - that's not going to happen for a while (but will eventually - 6 months+ out and Doug can eat almost anything).

arndog64

DrMary said:

Mashed potatoes are like sandpaper
to a sore throat (all those little starch bundles are scratchy) even though we "normals" think of it as soft.

You're looking at a month or so of liquids, so get good with the blender. Smoothies might also be too abrasive (cellulose from the fruits and such) - Doug really did go weeks on just Boost Plus and milkshakes (Carbogain, whey protein, milk, cream).

Some artificial flavors might also bother his throat. Doug finds the CVS generic of Boost Plus makes his mouth itch, but the expensive Nestle stuff doesn't (naturally). Stevia in one of the milkshake powders did the same.

But, let go of the idea of "eating" - that's not going to happen for a while (but will eventually - 6 months+ out and Doug can eat almost anything).

He has the pain patch,
He has the pain patch, liquid vicodin, liquid methadone. But they wear off in 2 hours and his dose says only take at 4 hr intervals. So, needless to say his pain is not managed well at home. Trying to get a prescription filled before the time is up. They treat you like drug addiscts. LOL Anyways, the hospital is working on the pain mgt. meds every 2 hours. I am going to be aggressive with him at this point. It has been a good 6 weeks of eating a shake 2-3 times a week and that's it.I am going to have a talk with his doctor's today if he does not speak up...

Goalie

arndog64 said:

He has the pain patch,
He has the pain patch, liquid vicodin, liquid methadone. But they wear off in 2 hours and his dose says only take at 4 hr intervals. So, needless to say his pain is not managed well at home. Trying to get a prescription filled before the time is up. They treat you like drug addiscts. LOL Anyways, the hospital is working on the pain mgt. meds every 2 hours. I am going to be aggressive with him at this point. It has been a good 6 weeks of eating a shake 2-3 times a week and that's it.I am going to have a talk with his doctor's today if he does not speak up...

maybe not too late


What I meant when I wrote that it may be too late for the tube was that, it didn't matter if it was or wasn't, if you can't get there. If they schedule a tube for a couple of days from now and if it takes a few days to get up to speed then there is a problem. Hydration and nutrition are needed now.

I remember the stage when even though I was still swallowing some, just the thought of food was so revolting that I would get a stomach ache. This was so demoralizing both to me and especially to my wife (DrMary) who tried so hard to find me something I could ingest. We have such sympathy for you both. Doug


I guess I repeat myself since this is what I wrote in another thread:
"If they can get the right stuff, they can also feed you (or give you necessary nutrients) by IV as well. It's probably not as good as eating nor even as good as a tube (which I managed to avoid) but your situation now is survival for the next couple of weeks. Even if they put in a tube next week you would need hydration and nutrients to get there."

Skiffin16

DrMary said:

Mashed potatoes are like sandpaper
to a sore throat (all those little starch bundles are scratchy) even though we "normals" think of it as soft.

You're looking at a month or so of liquids, so get good with the blender. Smoothies might also be too abrasive (cellulose from the fruits and such) - Doug really did go weeks on just Boost Plus and milkshakes (Carbogain, whey protein, milk, cream).

Some artificial flavors might also bother his throat. Doug finds the CVS generic of Boost Plus makes his mouth itch, but the expensive Nestle stuff doesn't (naturally). Stevia in one of the milkshake powders did the same.

But, let go of the idea of "eating" - that's not going to happen for a while (but will eventually - 6 months+ out and Doug can eat almost anything).

French's Mashed Potatoes
I liked the French's because they were like powder and you can make them really thin or runny, LOL...

But agree with the no food.... while I didn't have the PEG (Bob, LOL)....I did survive only on Ensure, water and sliced canned peaches for seven plus weeks...with a good amount of pain meds.

I didn't have pain other than trying to swallow, even water hurt.

I've mentioned before, mine was to setup everything, because you don't have much time and you need to get nutrients in you fast, LOL.

A teaspoon of liquid numbing solution (or liquid hydrocodone), glass of water, one or two Ensure, a few slcied peaches, more water and a ground up percocet in a little water. Then haul azz to the hot shower...weird I know, but it made me feel better letting the very warm nearly hot water run over my face, head and throat....

Did it hurt to swallow, ummm yes, could I taste any of that stuff..uummm no, did I have to do it if I wanted to stay alive...yes......

The thing with getting de-hydrated, weak, no food, whatever...it's a downward spiral. The less you eat or drink the weaker you become, the more you just wanna sleep and be left alone, the less you eat and drink, the worse you feel, etc, etc, etc.....

Somehow you have got to get him out of this funk and do what he needs to do....else the docs's will hopefully do it for him.

***Never too late, wasn't meant for you Goalie, I just meant in general****

Best,
John

Pumakitty

Thinking of you both
I hope he starts to feel better soon. Try to take care of yourself also.

Kathy

sweetblood22

Pumakitty said:

Thinking of you both
I hope he starts to feel better soon. Try to take care of yourself also.

Kathy

Feeding tubes aren't the
Feeding tubes aren't the weak. I am pretty sure anyone who knows me will tell you I'm not weak.

Mashed potatoes still don't feel particularly good in my mouth and back in the begining of when I was trying to eat it was like trying to eat fiberglass and sandpaper. I couldn't even do liquids.

At my peak, I was on 75 mcgs of fentanyl, Roxicet for break through pain, and had a lip lock on that stupid magic swizzle bottle and my pain was still unbearable. Tears streaming down my face wanted to take my head off and throw it in the creek unbearable. Eating was not an option. My mouth bled pretty much constantly. The entire roof of my mouth came off in a sheet at one point. I don't think I was weak. I think I was pretty damn strong. He won't heal if he doesn't get nutrition and liquids in. If he were my husband, he'd be getting a kick in the arse.

I really hope if he cannot drink or eat, he does what he needs to do to get nutrition in him. Please know my thoughts and prayers are with you guys.

miccmill

sweetblood22 said:

Feeding tubes aren't the
Feeding tubes aren't the weak. I am pretty sure anyone who knows me will tell you I'm not weak.

Mashed potatoes still don't feel particularly good in my mouth and back in the begining of when I was trying to eat it was like trying to eat fiberglass and sandpaper. I couldn't even do liquids.

At my peak, I was on 75 mcgs of fentanyl, Roxicet for break through pain, and had a lip lock on that stupid magic swizzle bottle and my pain was still unbearable. Tears streaming down my face wanted to take my head off and throw it in the creek unbearable. Eating was not an option. My mouth bled pretty much constantly. The entire roof of my mouth came off in a sheet at one point. I don't think I was weak. I think I was pretty damn strong. He won't heal if he doesn't get nutrition and liquids in. If he were my husband, he'd be getting a kick in the arse.

I really hope if he cannot drink or eat, he does what he needs to do to get nutrition in him. Please know my thoughts and prayers are with you guys.

Feeding tubes rock
and I mean that with all sincerity. We had the PEG tube placed a couple weeks before treatment started for Glenn and when the time came when he needed to use it, the transition was smooth and calm. He had a few weeks of forcing himself to swallow water a few times per day but not having to worry about meds or nutrition. The tube took care of that.
He never dehydrated and never felt weak. All of which I'm very grateful for.

I agree with Noellsmom, time to push this on his behalf. I know from working in a hospital that Drs. and Nurse Practitioners are no strangers to hearing the rest of the story from the patients caregiver. I'll bet they can also help dispell the myth that only weaklings get feeding tubes. You could use some outside help on that topic, I bet.

He'll feel so much better, so much sooner, with some protien intake.

Best of luck
Lisa