Eating Part I

mswijiknyc said:

the McDonald's Fiasco
Alright, since you dragged it out of me

I personally love this story and will cherish it more with time.

For most lary(ngectomy)s healing reqiures patience, which my husband Pat was absent the day God was giving it out. He was told well before surgery that he would have a feeding tube and was given the option for through the nose or a PEG. He chose a PEG and was told he would need to keep it in for a while since right after surgery and for a couple weeks after at least, possibly longer.

I did say Pat has no patience right?

For a comparison, there is a wonderful lady on here - Silver Foxette - that has had a similar surgery to Patrick's. She is a lary also and told me that it was almost 3 months before she could swallow anything. Other stories I've read from other larys sounds similar. It can be weeks to months before you either can swallow or are OK'd to swallow. Surgeons want to make sure you won't aspirate or create fistulas in their stitch work. Going back to fix those is painful and tedious for the patient.

Pat has the patience of a 2 yr old. I said that right?

His surgery was on a Friday. By Monday immediately after he wanted food and drink by mouth.
"Hun, I can't do that yet. You have to heal. You won't starve, they are feeding you."

Tuesday - "I want a Pepsi and chips (no-nos for healing larys! sharp foods and carbonated beverages!) They aren't feeding me today."
"Yes hun they are. No I can't bring it for you." dirty looks ensue.

Wednesday - "They aren't feeding me! It's been 5 days! (he started keeping count. good for brain bad for me) This is inhumane! I'm not in prison!"
"Hun they are feeding you. You have a feeding tube remember?"
"I'm still hungry! I can swallow my spit! What's the difference?!"

Thursday - see above, add one day, insert curse words at random

Friday - "SEVEN %%$%^^&*&^ DAYS!!!!!" This was the day I stayed at home to rest. I feel bad for his nurses.

Saturday - I caved in. I smuggled in Jolly Ranchers. "I can't take the taste of metal anymore!" His friends smuggled in Cherry Lifesavers. He also glommed 2 swigs of my Pepsi.

Sunday - Again glommed more Pepsi. Also asked for Sour Patch Kids. This was the day he started having problems with his drainage tubes (I called em bedbugs. They slept with him and sucked his blood. Seemed apt)

Monday - He woke up assuming he was going home. He was very very wrong. And so became very very very angry. By the time I made it to his room around 1 pm he was telling everyone he was going to sign himself out of the hospital. By this time his one drain tube site was softball size and not draining at all. The tube had been removed and the site was not flattening out. I did not want him coming home just to turn around and come back. So I did what any self respecting person would do to mollify an irrational person.

I gave in.

The number of things I could do was limited (can't bring beer in a hospital yet) so I offered this: If I bring you food, will you stay one more day?
"Yes."
"What do you want?"
"A quarter pounder with cheese, large fries, and a Coke."
He was supposed to have a swallow study to make sure there were no fistulas before eating even jello. In my mind we had been doing a swallow study since Saturday with cherry Lifesavers, Sour Patch Kids, and Jolly Ranchers. If he had a fistula, it would have drained into his tubes, or they would have caught the sound of fluid in his lungs.

I don't think I have ever seen a group of doctors move that fast, or ever will again.

Within 2 and 1/2 hours, all the residents on the surgeon's team, his speech therapist, and both surgeons had come to visit. All of them admonished the both of us, him especially.
"Carbonated beverages are the worst!"

"You do understand that when he gets home the first thing he's doing is cracking open a cold one right? Better to try it here when he's still in a hospital."

"French fries? Sharp foods can damage all the stitches!"

"Put ketchup on it."

Needless to say EVERYONE heard about this one. Everyone was amazed at his speedy (and I mean speedy) recovery. Most larys aren't healed for weeks after; he was almost good to go in 10 days.

And yes I broke a few rules. Ok, all of them. But as long as the patient is happy that is all that matters to me

P.S. - I did sneak in something clandestine. If you every hear of a construction worker asking for peanut butter cups, you'll know what I'm getting at

McDonalds fiasco.
Love this story. Thanks for sharing!

buzz99 said:

Eating
Using the peg is much easier than eating!! Hubby has a peg and is 1 month post induction TPF chemo for stage IV BOT cancer. He starts radiation on Monday. Here is the problem: he just won't eat! He is relying on the peg and is receiving 2400 calories per day via tube feedings. He says everything tastes funny and he does not like "clumpy little surprises" in his food. Knowing he will have difficulty swallowing once the radiation takes effect, I am frustrated in his refusal to eat while he can! He thought he wanted some pumpkin pie so I made one. He took one bite and refused to eat more. Anyone have this
experience? I am tearing my hair out trying to coax him to eat.

loss of taste
my husband told me the other day that taste for him is a strange thing. He lost his sense of smell so his sense of taste went too. He explained it to me that things he remembered the taste of he can still "taste" but if it's something new, he can't taste it at all. It's weird for him because things he still can taste the flavor is diminished quite a bit.

the PEG is great for supplemental, but he's gotta swallow! Milkshakes, smoothies, anything liquid throw some weight gainer in there and blend it well. Let him know this is one of those ya use it or lose it things, it might get him to see what's going to happen if he doesn't try.

Lots of hugs hun! I know just what you're going through!