Old 06-01-2010, 09:14 AM #1 (permalink)
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Default Hard times....

This morning Stephen Foster's song Hard Times came to my mind except I remembered it not as "hard times come again no more," I remembered it as "hard times come knocking at the door."

It has happened, the first of my worst fears, over the weekend my husband finds himself unable to swallow. He is hungry and unable to swallow without coughing his lungs out. Now it is more merciful knowing than not knowing and so I explain what he has. I will do it as we move into each stage. He agreed to have the feeding tube inserted.

I told him about you all, brave souls here - knowing he would not then feel so alone in this. Daily I will share with him news from here so he knows he is not alone.

As I walk this morning, sadness coming over me, I felt at that moment in this unit, this group, surrounded by you all, by your spirits and my tears eased.

My worst fears, cannot eat, cannot talk, cannot breathe, the first is happening.

Missy, I think of you, and hope things will slow soon for you.


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Old 06-01-2010, 09:17 AM #2 (permalink)
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Default Re: Hard times....

ghii, I am so sorry to hear that your fears are coming true and yet so glad that you have us as a comfort. We are all here for you during this difficult time. Many hugs are sent your way, wrap yourself in them.
We love you!
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Old 06-01-2010, 11:54 AM #3 (permalink)
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Default Re: Hard times....

Sweet Gertrude, thank you so much. We are going to the gastroenternologist on 6/16. I think we will schedule the insertion of the feeding tube now, before he gets too weak or really needs it. Keep us posted on how you are both doing. You are in our thoughts and prayers.
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Old 06-02-2010, 09:24 AM #4 (permalink)
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Default Re: Hard times....

Missy, it is so much wiser to get the tube inserted earlier than later though I could not talk him into it until he is not able to eat completely. He is able to drink only.


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Old 06-02-2010, 09:34 PM #5 (permalink)
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Default Re: Hard times....

Just remember to always be proactive as to reactive. It makes a world of difference on the PALS and CALS when things can be thought through and you're able to ask questions and do research.

Jodi
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Old 06-02-2010, 09:50 PM #6 (permalink)
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Default Re: Hard times....

ghii...take a deep breath. I so remember when we decided to do my hubby's feeding tube. This was one of the easier decisions in the ALS journey. The whole process is mind boggling..and heart breaking. We are here for you. K
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