still mostly stable in hospice

I just wanted to give a brief update on Tom.  He is now a resident at the hospice facility - he has been there for over a month now. 

Last week he was pretty unresponsive, and I thought we were progressing.  Sunday, he started with a horrible cough - seems he didn't feel good last week and was getting sick.  So now he has a sinus/cold issue, that is getting better now that we are treating it.

Yesterday we celebrated our 3rd wedding anniversary, with lots of smiles and a pretty alert Tom when he was awake. We spent the day watching b&w monster movies, with Tom watching the back of his eyelids :)

He is still seizure free, as far as we can tell at this point.  Only had a couple of headaches with this sinus/cold issue.  And other than a sore neck from coughing so much, he is pain free, and tylenol is currently all he is needing for any pain.  We go back and forth with his swallowing issue raising it's ugly head, but he doesn' t have much of an appetite and is kept well hydrated via peg tube flushes for now.

The staff has been amazing!  They love both of us.  So they take great care of Tom, and keep him laughing and smiling when I am not there.

That's the current update from these trenches....

-Karyn

On Nov 01, 2012 4:11 PM karynk wrote:

I just wanted to give a brief update on Tom.  He is now a resident at the hospice facility - he has been there for over a month now. 

Last week he was pretty unresponsive, and I thought we were progressing.  Sunday, he started with a horrible cough - seems he didn't feel good last week and was getting sick.  So now he has a sinus/cold issue, that is getting better now that we are treating it.

Yesterday we celebrated our 3rd wedding anniversary, with lots of smiles and a pretty alert Tom when he was awake. We spent the day watching b&w monster movies, with Tom watching the back of his eyelids :)

He is still seizure free, as far as we can tell at this point.  Only had a couple of headaches with this sinus/cold issue.  And other than a sore neck from coughing so much, he is pain free, and tylenol is currently all he is needing for any pain.  We go back and forth with his swallowing issue raising it's ugly head, but he doesn' t have much of an appetite and is kept well hydrated via peg tube flushes for now.

The staff has been amazing!  They love both of us.  So they take great care of Tom, and keep him laughing and smiling when I am not there.

That's the current update from these trenches....

-Karyn

Karyn, I am very sorry and we are there as well.  

On Nov 01, 2012 4:11 PM karynk wrote:

I just wanted to give a brief update on Tom.  He is now a resident at the hospice facility - he has been there for over a month now. 

Last week he was pretty unresponsive, and I thought we were progressing.  Sunday, he started with a horrible cough - seems he didn't feel good last week and was getting sick.  So now he has a sinus/cold issue, that is getting better now that we are treating it.

Yesterday we celebrated our 3rd wedding anniversary, with lots of smiles and a pretty alert Tom when he was awake. We spent the day watching b&w monster movies, with Tom watching the back of his eyelids :)

He is still seizure free, as far as we can tell at this point.  Only had a couple of headaches with this sinus/cold issue.  And other than a sore neck from coughing so much, he is pain free, and tylenol is currently all he is needing for any pain.  We go back and forth with his swallowing issue raising it's ugly head, but he doesn' t have much of an appetite and is kept well hydrated via peg tube flushes for now.

The staff has been amazing!  They love both of us.  So they take great care of Tom, and keep him laughing and smiling when I am not there.

That's the current update from these trenches....

-Karyn

Karyn,  Thank you for the update. I am very sorry and we are there as well.  

Hey there Karyn....I was just wondering how you two were doing.  Thanks so much for the update.  Wish we had a hospice facility in our town, especially one as nice as the one Tom is in.  The closest facility to us is an hour away...ugh Having Kevin under hospice care at home has been challenging and very scary at times  : (

Happy belated 3rd wedding anniversary : )

Still in the trenches.....and what a battle this has been...Melissa

Hi, Karyn.  So glad you were both able to celebrate and acknowledge your third wedding anniversary together.   As long as you both are together anywhere, it means alot. 

I am glad he is stable and getting the care he needs at hospice with you supervising, I am sure.  You are with him all the way and given/still give him the best of your life and care.  

Jan

Hello Karyn,

Sounds like things are going about as well as they can be. All my best to you, your hubby and your families.

Hux..