Courage for Kennedy – Journal

December 24, 2005

Category: Treatment – Melenie – 11:49 pm

Why does there always have to be good and bad? We sure could use all good right about now! The best news of the day is that Kennedy’s medicine is here! We were starting to get worried but it showed up around 5pm tonight. The drs had thought she might not need it after her great showing yesterday but she has had a couple of setbacks. Not too serious but serious enough that it reaffirms the importance of taking the experimental meds. Her liver function had been improving but has taken a little backslide. Her ammonia counts were again rising and her clotting elements were falling. The staff is staying right on top of it and working to bring them back down, or up as the case may be. The hope is that this new medicine will release the pressure on the liver and allow it to work. As you can imagine, this is a long and slow process. She is no longer running a fever and when they drained her abdomen today, they removed less than before. We also learned that her white blood count is zero; this of course means that her ANC is also zero. We now have to be VERY careful about visitors and continuously wash our hands to prevent infection. An ANC of zero means absolutely NO immune system. Ideally she should be over 1500 and this is the first time she has been lower than 20. Pretty scary. Overall, things are progressing-just very, very slowly. There was more talk today of putting Kennedy on a respirator. She is doing well as far as keeping her CO2 down today, but the respiratory therapists are concerned that her lungs are getting tired and may need rest. Oh, when will it ever end? We just cling to the good news and wade through the crappy.

On a good note, I was able to go home for a while today and take a shower, in my own shower!, wrap Christmas presents and get the trailer ready to bring up. The trailer is here so that will make things a lot easier for all of us. It will also be nice to take some of our food to the trailer (Thank you, thank you to everyone who has come bearing food-I would also like to add, that those who have brought food have gotten to see our Miss Sassy Pants!). My mom and Caryn were able to stay with Kennedy today and I really appreciated the time I could have at home with Austin. Speaking of Austin, please pray for him as this has been very difficult for him; not just because of his sister’s condition, but because he has to be away from us for long periods of time.

Bill and Lynn Toops came by today. We had a great time laughing, mostly at Bill :), and visiting. They blessed us with a whole array of food that included a variety of sandwich fixins, chips, pop, string cheese, V-8, potato salad and treats for all. They also sent along the necessary paper/plastic items needed. Thank you so much-all of this blessing has made it feel like Christmas again.

Mom and Caryn decorated Kenn’s room for Christmas and one of her rt’s is bringing her a little light up tree tomorrow. There really is a Santa Claus. Speaking of, he should be here soon so I better get some rest.

Merry Christmas to all, and to all a good night.


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