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Monday, April 12, 2010

Too much sadness

I have been following some friends of mine for about a year, that I have met online. These CF freinds have helped me through tough times, and also through the good times. It's a wonderful thing to have people close hand, who understand that having CF isn't a picknic.

There always seems to be bad news that goes around, and unfortunetly, as you have read before, there is some sad news in the CF community again. As you all are aware, Eva Markvoort, the Cf ambassador for the world, with her documentary about her transplant called 65 Red Roses. Eva had passed away on the 27th of March, only 3 days before her birthday. She will be sadly missed by all who knew of her, knew her personally and those who lived vicariously and wishfully through her. Eva will be missed by all.

Last session I wrote, I spoke of Emilie from Ottawa, who had passed away a few days before Christmas, and our sympathies are with her family also.

But this is not about Eva and Enilie. This story is about another CF'er who needs out help. her name is also Emily, and she has been fighting infections for a few months now. I have been keeping up to date with her blog. I have posted her last entry here, and also the entry of her family from the "Caring" page.

Resting on Sunday
Posted 20 hours ago

Emily is having a quiet, restful day today. Unfortunately, she finds this a little boring. She said she feels lazy and wants to get up and move around, but we have to keep reminding her that it will be a few days until she can do that. She is going in and out of sleep.

Our main job today is to keep her distracted when she is awake to help her pass the time. Her nurses and RT are working hard to keep her comfortable and free of pain.Surely, this young woman is protected by a cloud of prayer surrounding her! We are amazed at how well she is recovering from the intestinal surgery.

Though the surgeon said she would likely go through some tough times, we have not seen them. She has had no bleeding, which was the greatest danger, her vitals have remained stable and she does not have much of a fever. She is experiencing pain, but it is under control. She must be still as fluids continue to drain from her abdomen.

Honestly, she seems to be doing very well today.Her doctors have tentatively scheduled the trip back to the OR to close the incision for Tuesday instead of Monday. She needs more time for the swelling to go down. At that time, they will sedate her again so they can thoroughly clean out the surgery site and close the wound.

Tomorrow, then, will be another quiet day of rest (we HOPE).Because the sedatives have now worn off, Emily has been very alert and communicative today. She is getting very frustrated with our limited ability to read her lips. She wants so very much to talk.

This morning, she was amazed to learn that it is April. She is aware that she has missed so much out in the world. She is also learning that she has a long road ahead of her. She really wants to know how long it will be before they remove the trach and she can get her voice back again. We long for that day!!

Until then, let's keep praying for Emily to stay on this positive trend.

Diane

I will keep everyone posted on her condition. Keep her in your paryers it's working so far.

Thanks
Ali

CF info at: http://www.ccff.ca/ & http://www.cysticfibrosis.net/