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Sleeping and tube feeding

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Chincoteaguer

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Sibyl has been sleeping a lot these past few days and definetly losing her concentration - she picks up her white board and magic marker and then just lays them on her stomach, etc.

I have been letting her sleep thru her feeding times and when she does wake up she will only let me feed her about half the Jevity of past feedings

She does not seem under any stress but does wimper occasionally.

Should I wake her at feeding times or is it okay to skip feeding.

I would call hospice but I know the knowledge on this forum is better and I don’t want her to overhear a telephone conversation with hospice.

Also, she has rejected the Trilogy twice today. She puts it on and then wants it taken off.

I’m thinking this may be the beginning of her flight for freedom and I want to do the right thing.

Ernie
 

affected

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Ernie this is how I would look at it, and how I did with Chris.

The digestive system will slow down as the body weakens, and then it takes a lot of calories for them to digest what they do take in. A point is reached, and as a CALS our gut feeling means more than any science.

If you feel she is better sleeping and slipping in peace, then don't disturb her. Hospice would support you fully on this.

When you are ready to talk with them about it, whether that is today, days or weeks away, you can discuss discontinuing all nutrition and how you might decide on this.

I wish you so much peace - this is pure love, making the really hard decisions for the true best.
 

Chincoteaguer

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Thanks Tillie;

I have read so much about the agony leading up to the end. If this is the ending I feel blessed. She has had minor anxiety and some twitching and joint pain but overall the issues have been mild.

I have stopped all medication: Trazodone, CBD oil. Tylenol but I still give her Citalopram in the morning. This has not caused any stress and she is sleeping all night except for a couple of repositioning and maybe a diaper change.

You are awesome. Thanks a bunch.

Ernie
 
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lgelb

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Agree with Tillie, Ernie -- no need to wake her when she is sleeping, and your instincts trump whatever hospice might say. And yes, restlessness with the Trilogy and other things could mean that she is close to her wings.

Most often, when we take our cues as CALS from our PALS, life does not end in agony, and it should not.

Best,
Laurie
 

Vincent

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With a gravity bag or pump, she should be able to maintain feeds while sleeping( tilted up 45* at the head. Food and hydration to my thinking aren't extraordinary measures. It is her choice though.

Vincent
 

Chincoteaguer

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Life as a CALS would be hell on steroids without this forum. My best to all.

She just woke up from the 5pm nap. Gave her some Trazodone, water, and Jevity. Although she is making noises on each breath she seems to be resting. The noises usually stop after 30 minutes or so.

Vincent; We were introduced to continuous feed during our June stay at the hospital. While I was at home my daughter who relieved me at the hospital had them remove it because my PALS was uncomfortable with the hanging bottle.

Ernie
 

Narrowminded

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Ernie - as both Tillie and Laurie have said, follow your PALS lead. If she is not hungry, don’t force food and let her sleep. Our bodies are amazing and know exactly what we need. Hugs to you as you travel this path closer to wings. It’s not an easy one to trod, but filled with many blessings.

Hugs
 

wishmobbing

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If she's over a certain point food is real work for the body. Offer it and let her (and at some point your) gut feeling decide. You two are doing great together. No reason why she can't continue to have only mild issues.
 
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