mrv
Posted : 1/17/2011 9:15:32 AM
Some details
On Tuesday we thought she would die but there was a small miracle. With some medication and position changes, the swelling went down and she woke up. There had been about 25 people in her room at the time, she opened her eyes and started talking to folks. She was a chatter bug for about 5 hours. Since that time she has had some periods of time wake and aware each day.
On Weds she was with the psychologist who has worked with her along and they talked about the fact there is no treatment and that she would die from the disease. Then another miracle, she orchestrated an entire evening in which she talked to her crowd of girl friends and gave them their "orders" for how to care for each other and her family, then she brought in the extended folks, Tish, Jess, me, grandparents etc and gave us our directives to care for her family and our families. She proceeded to tell us she was at peace with all this..... boy were we all grabbing tissues then. She spend the rest of that evening with Tina Randy, Jacob and Zack. Small events like that continue to happen.
I am taking Hannah's directive to heart and am going to share with you a document that was provided to us by the palliative care team. It has been very helpful to us and I think may be helpful to others who are not aware of it.
THere are other miracles too, like Randy's boss paying him each week. Coming to the hospital and running about getting special dinners and other treats for Hannah and family. The lady with a beautiful full size guest home that is being provided to anyone who wishes to stay over. The pile of socks filling two large baskets so not only with the J unit have crazy socks, everybody with have multiple pairs.
There have been a few events that indicate she is moving closer to her transition to what is next. There are some facial swellings that likely due to fluids not moving freely. There have been some involuntary movements (arching her back) which are unnerving to her. She is now needing thickened fluids as she will choke on water.
She participates in her care decisions and is still visiting with folks in the evening.
I don’t want this to happen but the journey is teaching me so much about grace and courage... Hannah is one heck of a lady......