PEG tube

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Kevalyn

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Mom went in yesterday for what we thought would be a simple procedure to get her PEG tube. Not so.... She stopped breathing & had to be revived. Now, she'll have to be admitted and put on a respirator in order to have it done. Doctor informed us that because the muscles are so weakened & her blood oxygen level is already low, she might not be able to come off the respirator. Our faith is really strong and we believe that she's going to come out of this ok, but how do you prepare for the possibility that this might be the end?
 

Al

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That's a really hard question to answer but you say your faith is strong. Pray for a good outcome but be prepared for the worst. Your faith will carry you through this.

AL.
 

Ms. Pie

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Thankfully, if you do have a strong faith in God, you're not alone. I'll be sending prayers up for you.
 

Sequoia

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Sending prayers your way! Be strong! God knows when it is time...trust in Him!
 

BeckyW

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When I got my peg a few months ago I had difficulty breathing in the recovery room and had to be " bagged". I remember fighting to breathe and being cold. My body temperature dropped too. It was a night mare for my husband. They asked him to leave but he wouldn't. The doctors don't know if it was a reaction to the drugs given at surgery or the one I got just before I had the episode. I remember being wheeled to a room covered in an inflatable blanket with teddy bears on it. They gave a private room and brought a cot for Doug because I am nonverbal. I was not allowed any pain meds or water. Then they tried a Bi pap on me. I only lasted an hour....too much...The respitory therapist at my ALS clinnic thought that was nuts when I told her about it. I try one again in my own bed.
 

EGBAR

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Kev I am praying that your Mother recovers and will be home soon. To answer you question how do you prepare, I don't think I can. I have had a poem that was read at my Brother in laws funeral which really touched me. Some most likely have heard it but I will share here anyway. My prayers are with your Mom and family.

I Am Standing Upon The Seashore
By Henry Van Dyke

I am standing upon the seashore.
A ship at my side spreads her white
sails to the morning breeze
and starts for the blue ocean.

She is an object of beauty and strength.
I stand and watch her until at length
she hangs like a speck of white cloud
just where the sea and sky come
to mingle with each other.

Then, someone at my side says;
"There, she is gone!"

"Gone where?"

Gone from my sight. That is all.
She is just as large in mast and hull
and spar as she was when she
left my side and she is just as able to bear her
load of living freight to her destined port.
Her diminished size is in me, not in her.

And just at the moment when someone
at my side says, "There, she is gone!"
There are other eyes watching her coming,
and other voices ready to take up the glad shout;
"Here she comes!"
And that is dying.
 

Kevalyn

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EGBAR, I love the screen name. Yes, everything is going to be all right. Thanks for the poem. I'm going to copy & print it for keeping. Although I want her to recover from the procedure, a small piece of me wouldn't mind if she went to glory because I see how much she is suffering. But then I struggle with the guilt of feeling this way.
 

tammyg

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EGBAR, I love the screen name. Yes, everything is going to be all right. Thanks for the poem. I'm going to copy & print it for keeping. Although I want her to recover from the procedure, a small piece of me wouldn't mind if she went to glory because I see how much she is suffering. But then I struggle with the guilt of feeling this way.
Kind of Bitter Sweet. I totally understand. It hurts you like hell to see them go to "The Party in the Sky" and it hurts like hell to watch them suffer. There is no guilt for you to feel, it sounds like pure unselfish love...
They say God don't give us more then we can handle. Well I will tell you this, some of the people on this forum are the strongest people I have ever meet. Good Luck & stay strong!
 

momap53

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Kevalyn, You and your family will be in our thoughts and prayers today.
 

Kevalyn

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TammyG, you are right about the people here being strong. I've often said that God knew who could handle this disease. I've always seen my mom as a very strong, independent woman, but to watch her go through this with such dignity & faith, I'm in awe of her. I can't even begin to imagine the amount of pain she is in daily, but she still has a smile on her face & NEVER complains. In the 7 months since the diagnosis, I've only seen her cry once and say "why me"? Most times, she's praising God and thanking him for her healing.
 

Kevalyn

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Mom's not sure if she wants to do the PEG tube now. I'm sure the risk of not coming off the respirator has her a little scared. But not sure how long she can sustain if she doesn't get the tube. I have no experience with this. Those who have or have cared for someone with the PEG tube, what have you experienced? I'm going home tomorrow so I know my brother & I plan on discussing it with her.
 

lisaohgee

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Kevalyn, I'm sorry to hear this. I know what you mean about that piece of you. That's a big piece of me right now, actually. I am so tired of seeing my mom suffer and be so miserable.
 

tammyg

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Hey Kev, When my dad got the peg, it was a quick operation, like 20 min tops. He was a little uncomfortable but really not that much pain. He started to put on weight for awhile. It made life so much easier, he still ate as long as he could but you know how they have problems getting it down and not coughing and choking. It seemed like it took forever for him to eat.He ate alot of apple sauce, he took his meds with it. His favorite meal was ice cream, my kids used to say why can't they have ice cream for dinner. After the tube a meal took less then 10 minutes. He was able to crush his meds, mix with a little water and put that in the tube too. When the tube got cloudy looking, we would just put a little Coke a Cola in it. Cleaned it right up. I really feel for you.It was the hardest road I have ever went down in this life time.I guess sometimes life is not fair. Keep us posted, she is lucky to have you guys!
 

Danijela

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Hi there,

what do you mean by 'respirator'? Bipap/non invasive ventilator?

My partner (and some other PALS) were connected to the non-invasive ventilator during the procedure as it requried them to lie flat on their backs (hard to breathe that way). Partner used nasal pillow type of mask so that the mouth could be free. He found it uncomfortable but that was pretty much it. He stayed on the ventilator for another hour and was off. He uses it at night only (ventilator)

Regards, Dani
 
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