no sleep for 72 hours

[tiabye]

So my sister has not slept since Wednesday. I am concerned cause everything that we have tried is not working. With all her meds she takes every day and she gets Benadryl, morphine, melatonin, on and on - Xanax! She used to sleep like 20 hours a day and now she is not sleeping at all. Has anyone else experienced this with their PALS?
Thank you!

PS she is also very sweaty and hot - we have a fan on her and its freezing in here but she says she is still so hot and we can't seem to cool her down. Even got the cooling rag to put on her neck. Any ideas on this too? Sorry just trying to understand what is happening.

Thanks

 

[Atsugi]

My initial thought is to watch her blood pressure and heart rate. Also, to look at the color of her urine. Keep her well hydrated.

Is she running a fever?

Wish I had a smarter answer.

 

[lgelb]

Hi, Michelle,

If she is not sleeping and cannot get comfortable, she may be in or nearing a phase called "active dying." By your posts, she has been near the brink over the last month, so you may want to consider what would best help her transition in peace -- creating an environment where you reassure her that everything is OK and that you wish her only peace. Depending on what she likes and can tolerate, music, scents, holding her hand, etc. If there is anyone/anything else that she may want to see or touch, this could be a good time.

Best,
Laurie

 

[tiabye]

Thank you guys.
We have a monitor where we watch her heart rate and oxygen level. They are usually pretty good. Oxygen usually 97-98 - heartbeat usually around 88-90.
No fever thank goodness.
Well last night She was in distress again and her levels were dropping and heart rate going up. It took awhile but saw that her tongue was stuck between her teeth. We could not pull her teeth apart to push it back in. It was turning black and so my mom gave her 2 muscle relaxers and a Xanax. I massaged her cheeks for awhile and then my mom had the idea of putting her back in the bed so that maybe it would help, I said lets try it nothing else was working. So when we did that, 2 hours probably later, mom was able to pull her teeth apart just enough for me to push the tongue back in her mouth out of her teeth. After that she fell asleep - was about 11pm last night - she is still asleep now. We are so happy she is getting some rest now.
And that her tongue is back where it should be! Who knew that that could happen! It just another horrible effect to this damn disease!!

My one older brother and aunt were here a few weeks ago and now my other brother is here until Tuesday. I am glad that they got here to see her.
Its a day to day thing.

 

[wishmobbing]

Whew, it's such a rough time for your sister. How good that you and your mom are a true task force!

 

[LeslieR]

That sounds horrible! I am so sorry!

 

[Narrowminded]

Brian’s tongue gets stuck, usually after suctioning. I ask, but he refuses. Sometimes you can press, pretty hard, where the join in the jaw is, back by the ear and get them unstuck, but not always.

I’m happy your Mom is now resting peacefully.

Hugs,

Sue