Update from the trenches

9 Posts | Page(s): 1 

Update from the trenches

by HubbyhasGBM on Fri Nov 16, 2012 01:50 PM

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Hey everyone.  My husband has had a setback and I'm just posting as an update since I considered most of you friends.  On October 30, he became resistant to having his head elevated at night.  That night, he insisted he keep his head flat and the swelling, by morning, had caused nausea and vomiting, which prevented his pills from staying down.  By afternoon, no other meds were able to be taken either.  By nightfall, he had to be admitted to the hospital.  They upped his steroids substantially, and then wanted to discharge him, but luckily kept him one more night.  During that night, urged by the steroids, he wanted to break out of the hospital (who can blame him) and caused the hospital staff stress.  I was shocked because they intended to let him discharge himself because they are ordered not to "chemically restrain" anyone.  This was at 3:30 a.m. on November 1.  He'd have frozen to death outside here.  A quick call to hospice straightened things out, but then he had to be transferred to a critical care hospice facility. 

This place is wonderful.  They know what they are doing.  It's calm, peaceful, and able to handle visitors with ease.  He's been here since, with repeated attempts to discharge him, but matching those efforts with newfound instabilities that allow him to stay.  They tell me he is likely to die within a few days now.  I will say, he is thus far in peace, not in pain.  For that, I am grateful.  This is a hard journey for all you warriors out there.  I commend each of you for your bravery and strength.  You'll need ample amounts of both to fight effectively. 

I'll try to update this as things change, but I don't want to miss the opportunity to thank each and every one of you who has helped us on this journey.  This board has been my favorite resource, as this disease is so rare that finding others near me would have been impossible. 

Hugs from here.

RE: Update from the trenches

by bilbosgirl on Fri Nov 16, 2012 06:49 PM

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I hope for continued peace for you. Sending positive thoughts your way.

RE: Update from the trenches

by oakisland on Fri Nov 16, 2012 10:26 PM

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Sending a prayer for strength and a peaceful end your way.

 

RE: Update from the trenches

by Spouseof on Fri Nov 16, 2012 11:46 PM

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Thank you for your update and so sorry for this horrible turn of events. This is such a heartbreaking disease; you, your husband and family are in my thoughts tonight.

RE: Update from the trenches

by ILoveMyHusband2 on Sat Nov 17, 2012 12:20 AM

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So sorry to hear your heartbreaking news but so thankful that you are in a wonderful facility that is doing everything they can do to keep him from suffering more. I know that having that peace of mind helps alot.  Stay strong and know that we are all praying for the both of you!!

RE: Update from the trenches

by GBMBGONE on Sat Nov 17, 2012 01:10 AM

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Sending my thoughts and prayers and a warm embrace your way.

RE: Update from the trenches

by HubbyhasGBM on Sat Nov 17, 2012 05:50 AM

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Thanks to all of you for your thoughtful replies.  It means a lot to me right now! 

The funny thing is that after 3 weeks of him having profound confusion, I am really, really, really missing intelligent adult conversation.  I'm like a starving person who hits a buffet!  I'm actually struggling with making small talk that does NOT involve cancer - something that I promised myself I would not do!  : )

Anyway, you guys are great - you lift each other up when no one else can!  And today, you were able to do it for me!  Kudo's to you all.

RE: Update from the trenches

by siblingof on Sat Nov 17, 2012 01:19 PM

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Sending you more strength...

RE: Update from the trenches

by tromda on Sat Nov 17, 2012 11:24 PM

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It sounds like you are walking a very tough road.  I'm amazed at your strength.  I hope hospice can continue to make him comfortable.

I've never heard of a critical care hospice.  Is it for patients with brain tumor like situations?  (i.e. aggressiveness, irrationality?)

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