Old 12-11-2017, 07:46 PM #376 (permalink)
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Default Re: Overwhelmed

My furniture was delivered last Friday.

Cliff is still hanging in there. The nurse came this morning and said some things had improved like his finger nail and toe nail beds. His pupils are sluggish but still responsive.

He seems comfortable most of the time. I gave him morphine a couple of times.

BP is down right now to 93/64. It could be on the way down but then again it has been up and down for weeks so who knows.

Thanks everyone for the hugs!
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Old 12-11-2017, 10:15 PM #377 (permalink)
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Default Re: Overwhelmed

Im glad he is comfortable right now. Hope he stays that way. Don't be afraid to use both, morphine and his anxiety med together. We even gave her a some of the dose for both through her mouth and the rest (which was a lot at the end) through her tube. Thay really helped my mom out this way. Thinking of you and keeping you and your PAL in my prayers tonight.
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Old 12-12-2017, 04:05 AM #378 (permalink)
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More hugs to you sooner, you are amazing xxx
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Old 12-12-2017, 07:29 AM #379 (permalink)
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Sooner so happy for a few small things, and your new furniture as well. You are an amazing CAL, Cliff is so blessed.

Holding you and hugging y ou tight right now.

Hugs,

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Old 12-12-2017, 11:53 AM #380 (permalink)
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Default Re: Overwhelmed

We are hanging in there guys!

Cliff seems to be comfortable. He tries to respond to me but can't really get his thumb up anymore.

Nurse says she doesn't really see any signs of him being active. Her only concern was his glassy foggy looking eyes.

I keep saying ALS is a different monster. I think one reason why it is so different is he is an otherwise healthy 53 year old... Most people in this position are older and things are more worn out?! Just my thoughts.

My Cliff is home and comfortable, honestly couldn't ask for more, except maybe a miracle?!
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Old 12-12-2017, 12:41 PM #381 (permalink)
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Default Re: Overwhelmed

Thanks for updating us sooner.

Are you giving him any nutrition and fluids still?

I'm glad he is responsive - my Chris could only slight raise his eyebrows for yes and lower them a little for no, but he was very much there.

He was only 55 and when he reached that end point went quickly in a few days. I believe it is how many breathing muscles are left, coupled with how many supports to keep life going are given (bipap, nutrition, fluids), and how much sheer determination to live is in there.

But regardless of any of these things, being able to be kept in a comfortable place is the most important thing and you are doing an obviously brilliant job of this.
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Old 12-12-2017, 03:06 PM #382 (permalink)
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He has only had 2 cans of formula since Thursday at 3 pm. I am giving him water with his meds but that is all.

I have noticed that it seems like he stops breathing for 2-5 seconds periodically. At first I thought he was yawning like he would in the office when he was alert but then I really watched and it doesn't look like his mouth is moving.
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Old 12-12-2017, 06:53 PM #383 (permalink)
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Sooner - that sounds like apnea episodes. Yes, ALS is a strange bird indeed. Brian too is an otherwise healthy horse. I really think that and the vent are what keeps him here and alert.

Hugs to you as you continue to the the awesome CALS that you are.

Hugs,

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Old 12-12-2017, 08:19 PM #384 (permalink)
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more hugs sooner. those are apnoea events.

You are doing everything possible and inside he will know this xxx
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Old 12-13-2017, 12:33 AM #385 (permalink)
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Sooner, I am just saying "HI"!! I have had absolutely no time to review post from other CALS and I apologize, but I hope you are both doing well. Wow, what a hectic time of year to begin with (if you celebrate Christmas); add to this my PALS has had PEG placement, follow ups, and I have come down with a nasty cold from burning the candle at both ends. Anyway, hugs to you my friend, and sometime soon I hope to catch up!!
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Old 12-13-2017, 01:22 AM #386 (permalink)
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Sooner, I should have read more thorougly before I posted. I did not know that Cliff was struggling as he is. Sending you a huge hug and encouragement, and hoping you are handling this as best you can. ALS SUC*S!! All we can do towards the end is hang on and hope to help our PALS remain comfortable. I am trying to send you strength and resolve via the net; Love & hugs to you.
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Old 12-13-2017, 12:33 PM #387 (permalink)
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Sending hugs and thoughts of strength and peace to you sooner xxx
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Old 12-13-2017, 04:17 PM #388 (permalink)
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It's been a rough day. Cliff has had a couple panic attacks due to air hunger. Very scary times. Nurse had to come back for a second time today. I hate the suffering!
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Old 12-13-2017, 04:26 PM #389 (permalink)
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You're such a brave girl! I wish you two a restful night get your energy up.
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Old 12-13-2017, 05:31 PM #390 (permalink)
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So sorry about the suffering. I’m holding you two in my thoughts.
More hugs....
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