Old 03-23-2018, 05:39 AM #1 (permalink)
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Default my dad got his peg!

My dad has his peg placed yesterday.
He was already week and losing weight and choking so badly - for hours, every single day....

At first I was so happy and relieved.... No more choking, and hopefully he'll become stronger eventually.
And it was a miracle he decided that peg was a way to go.

He feels horrible today - back home. Tortured by more saliva than ever, and at the same time very dry mouth.

He uses his suction machine, but I don't want him to use it too much so that it doesn't cause more saliva production. And he puts a wet cloth in his mouth to help the dry feeling.

Is there anything I could do to help...

He feels horrible. Very, very week. Can hardly walk now - and his walking was almost normal before. He also looks so much worse after the procedure than the way he was before...

Is it the disease progressing, or a reaction to the procedure and there could still be hope he'll recover and become a bit stronger.. I ask... but I know you guys can't tell me that....

Oh, and it seems that he may have problems with his thyroid. The surgeons noticed his eyes bulging, but didn't even test his TSH levels or anything related to thyroid.

Doctors here (in Poland) are horrible... sent him home with his peg - and nothing else, no instructions, no food, no nothing... The place that takes care of peg feeding - will have food for him some time next week...

So that's the way it goes....
And the worst part of it all is that I won't be able to be with him....
I just arrived a bit over a week ago for 3.5 weeks, and then will have to go back to the US. It breaks my heart so bad there are no words to even say it...
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Old 03-23-2018, 09:27 AM #2 (permalink)
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Default Re: my dad got his peg!

Glad to here your dad got the feeding tube.

I know what a nightmare the saliva is. Is it thick or thin? Does he use anything to dry it up? Does he have sponge swabs to moisten his mouth?

So sorry you can't be with your dad. I can't imagine what that feels like.
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Old 03-23-2018, 01:16 PM #3 (permalink)
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Default Re: my dad got his peg!

I hope he feels much better tomorrow! When my boyfriend got his peg, the day after was the worst shape he was in ever. I wasn't with him that day but my family and our bosses visited with him in the hospital and all got a good scare. Infection values were up (they werealready up a bit before the procedure), he got antibiotics and after a week, well hydrated and back home, he looked better than for a long time. So I sincerly hope that your dad needs to recuperate from the procedure and then will be better.
It's really good you came over for so long. Can imagine that's not to easy, ocean and all. We'll all help you through the first phase, just keep asking questions and posting updates, okay? Polish doctors be damned, you can do this!
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Old 03-23-2018, 01:54 PM #4 (permalink)
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Default Re: my dad got his peg!

Thank you so much, you give me hope!
And he seems to be quietly asleep now, so hopefully tomorrow will really be better....

I haven't mentioned that my mom has dementia and bad depression. She's suffered from severe bipolar disease for most of her life (she herself is a psychiatrist by profession, to make it more interesting...). About 12 years go, they finally figured out good drugs that kept her stable... until my dad started to choke daily.... what was happening to him completely destroyed her and ever since she can't get back to anything close to normal.

So it's two sick parents in one apartment. My dad was taking care of my mom until now...

My two sisters live pretty close by, so they'll have to figure out how to care for our parents, and it won't be easy given they both her 6-7 kids, including small ones....

I am so incredibly grateful that I can write here...

Thank you!
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Old 03-23-2018, 03:21 PM #5 (permalink)
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Default Re: my dad got his peg!

Try to remember they have just punched a hole through his skin and stomach, so he needs to recover and heal.

Many PALS report a variety of reactions, and it is why we recommend getting the peg as early as possible.

Keep and eye on him, try to keep the pain minimal and encourage him as it can take a week to really recover. hugs
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Old 03-23-2018, 03:31 PM #6 (permalink)
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Default Re: my dad got his peg!

The doctor said he was still in a pretty good shape, so that was also something I feel so grateful for... He kept saying no to the feeding tube forever, and then just last Saturday changed his mind. And they managed to schedule him so quickly...
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Old 03-23-2018, 04:49 PM #7 (permalink)
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Default Re: my dad got his peg!

I’m sure he’ll better and better each day. Make sure you are giving him fluids through the tube to keep him hydrated. His mouth could be dry from not having anything to drink. Take it slowly at first to see how he tolerates it. But ultimately he will need about 2000 cc of fluid/day. His food will be calculated into that amount, but he still need water.

Hugs,

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Old 03-23-2018, 05:40 PM #8 (permalink)
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Default Re: my dad got his peg!

Your family's situation is tough. So sorry about your mom's mental state. I can do no more than scream heartfelt encouragement in your direction. Can you hear me? I'm just across the border wishing you lots of strength.
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Old 04-13-2018, 11:35 AM #9 (permalink)
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Default Re: my dad got his peg!

I am back in the States, and my dad and mom - in Poland. We figured out a way to always have someone there with them, including nights, and I spent my last few days in Poland training everybody so that they know what needs to be done and how.

My dad can still walk, and has an almost perfect use of his hands.

The peg helped tremendously because now food/liquids are not a problem.

But since the surgery - the amount of saliva he gets got absolutely horrible. Before the PEG surgery, he never had to use his suction machine (just paper towels to wipe his mouth).
Now he uses the suction machine all the time, especially at night. And the saliva got so much thicker. Many nights, he chokes really bad on it. Probably not just on saliva, but also because he uses the machine too much and hurts his throat and makes it contract? I don't know how to describe it, but my impression while still there was that perhaps he used the machine too much each time, and too aggressively. But he'd tell me that otherwise it was hard to breathe....

Is there a way out of this problem?
Is it always so horrible at night (and not so bad during the day)? Can anything help?

He only takes one medication (acetylcysteine). But it doesn't seem to do much.
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Old 04-13-2018, 01:10 PM #10 (permalink)
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Default Re: my dad got his peg!

You are amazing! You probably helped them more in the few weeks than others could in a year. How good to know there's someone there around the clock.

I think the lady who brought us the not yet needed suction machine mentioned that too much can make it worse because it irritates the mucous membranes. Hope he finds the right balance.
At night it's maybe worse because he's reclined and saliva just flows down? Is he already sleeping with his head up in a hospital bed? A fat pillow could make a difference but likely not enough.
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Old 04-13-2018, 01:32 PM #11 (permalink)
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Default Re: my dad got his peg!

For thickening saliva, some of the things we recommend trying (through the tube, thinned if needed) are:
warm liquids, soda, pineapple or papaya juice, separately from formula or food blends.

I agree the suction machine can be overused and then detrimental. Is the air in his home and his BiPAP clean/humid/a comfortable temperature as he needs?
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Old 04-13-2018, 01:47 PM #12 (permalink)
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Default Re: my dad got his peg!

He doesn't have a hospital bed, but several pillows, and tells me it's the highest he could go to be able to sleep at all.

BiPAP - I don't know .

No humidifier in the house - and I don't know if the air is dry. Didn't seem to me to be dry, but just my impression. Should they look into it? It's spring time there, I'd think spring isn't very dry?

With the warm liquids, would it make sense for him to drink them at night? Those juices should be heated up a bit? Or soda? He normally doesn't drink any soda - I am not sure what kind would be useful?
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Old 04-13-2018, 02:32 PM #13 (permalink)
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Default Re: my dad got his peg!

Is it okay to put the suction tube down the throat, anyway? Are there any instructions somewhere that we could consult? I did some Internet research, and some people say it shouldn't go down the throat?
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Old 04-13-2018, 02:57 PM #14 (permalink)
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Default Re: my dad got his peg!

I also wonder what time of the day would be good to give that pineapple juice (I think that that's the only kind they could get in Poland)
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Old 04-13-2018, 09:03 PM #15 (permalink)
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Default Re: my dad got his peg!

Is there any way he could get a hospital bed? That is more comfortable than pillow stacks.

No, the suction "straw" should not be put into the throat unless someone is qualified-- there could be damage.

Hydration is always a concern so there needn't be a limit on the juice; the temperature and timing could be as he prefers.

Are you saying he does not have a BiPAP or you don't know how it's set?

With some humidifiers, you can set the desired level and it automatically keeps it there, and they are pretty cheap. So if the air isn't dry, it wouldn't kick in.
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