Alex will hopefully come home today, but before he does, Steve and I have to sit through an hour and half long "terminal care" meeting at noon. Hospice and the Butterfly Program (no idea what that is) will be arranged and set up and we will have to sign a Colorado DNR in order for Alex to get a powerful drug to help him with his symptoms.
Still running on fumes. One favor to ask. PLEASE don't ask us "how are you" just say "hello". Zoe is very excited to have the family together again. We all are.
Wish us peace and pray for Alex and ZG!
G
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5 comments:
Thinking of you all...just now how much so many people care.
Love Susan
We continue to pray for alex and the family. You are always in our thoughts.
love,
joy and mike
Alex is an incredible child. I pray for his recovery and strength during these dark days. I pray for your strength as parents. If all children had a fraction of the strength and character that Alex has, this world would be a much brighter place.
I am happy to hear that Alex can now be at home, surrounded by all of you. I wish you all peace together. Enjoy each precious moment. Remember that you are surrounded by so many people who care and want to support you.
Lots of love - Karlyn
Hello Gwen,
Spidy cake is ready when you are. Sorry to interrupt your meeting.
I read up on the butterfly thing. For anyone reading the blog the readers digest condensed version of the Butterfly program goes like this "Palliative care is a service offered to support and to maintain the patient’s comfort and quality of life throughout the treatment of a potentially life-limiting condition. The Butterfly Program is available regardless of whether or not the goal of treatment is cure, stabilization or comfort care when cure or stability is no longer possible. The Outpatient Butterfly team consist of an outpatient coordinator, two social workers, an outpatient chaplain and a bereavement counselor. Outpatient care is provided in conjunction with experienced pediatric home health agencies." More can be read at the Children's Hospital web site. www.thechildrenshospital.org/news/publications/practiceupdate/2005/butterfly_program.aspx
Gwen I hope this saves you some time in explaining what the "butterfly" is about and I hope I haven't overstepped my boundries.
Love and Prayers and more love and prayers!
Tina
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