We went through the night without any alarms on Alex's pulse ox. This means his readings did not go below 80% all night. We think that is probably due to the fact that his Midazolan was increased about an hour before bed time. This morning he seemed pretty out of it and we are sure we have seen a few petit mal seizures (space out-like) today. His pulse ox dropped into the 70's and he was very out of it at 3pm. They say these small seizures will lead up to a big one.His hospice nurse said his blood pressure was pretty good and his lungs sounded okay, but he is definitely slowing down. She would not commit to the 72 hours instead she said "no one knows." Steve and I had to discuss what we would do in the case of coma, etc.
So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.
My sister plans to leave tomorrow morning with her husband and son.
God bless you all for your support and beautiful messages.
Gotta go!
G
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5 comments:
I don't have any words except to say I truly love your family.
Gwen,
Hang on sweetie. Minute by minute, second by second, just hang on.
All my prayers and love to you and your family. Kerry
I know that this sounds a little strange, but take time to enjoy being with Alex. None of knows how much time we have here and I can't think of a better place for a Alex to be than at home with his parents and sister.
Ben spent most of his last day in a coma and I spent most of that time with my hand on his heart grateful for the time that we had been given together. No parent should experience the death of their child, but as a parent you have the unique joy of sharing your child's life.
And I wouldn't trade a moment of it.
Steve and Gwen,
When I was in church yesterday, we sang a song called "Soon and Very Soon". As we sang the words I thought of Alex and your family. I am not sure if you are familiar with the song, but it goes Soon and Very Soon we are going to see the King, Halleluijah, Halleluijah, We're going to see the King; No more crying there, we are going to see the King, Halleluijah, Halleluijah, we're going to see the King; No more dying there, we are going to see the King, Halleluijah, Halleuijah, we're going to see the King.
I found the song to download online, it is sung by Mighty Clouds of Joy and I also found it sung by the Brooklyn Tabernacle Choir & Andre Crouch. It is a song that has given me hope me in dark moments. It has an up beat tune to it and I thought it may bring comfort to Alex.
I pray that you and your family find peace and comfort when and where you can. Even in the simple words of a song.
Thinking of you, Tricia Prince
(my brother-in-law Pat Morris worked at Requisit)
Hi Gwen
This Amalia, Edoardo's mom, I am so happy because Alex liked the toy that Edoardo took him, Edoardo knows spider man is his favorite, Esther's mom told us.
I just want to let you know, that your family is in our prayers and thoughts, I really think of you as a very strong woman and a wonderful mom, if you are able to make your son laugh, you are great.
Thinking of you,
Castaneda's family
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