The Rheumotologist came by again today and said he is still working to rule out things. Apparently Lupus was a candidate but he doesn't think it fits any longer.
This morning the doctors made their rounds with updates, Mark and I had not made it back yet, but thank goodness Aunt Sunny is a journalist!! She took excellent notes!
The biggest news for Kayli is that her white blood cell count has stabilized. Its still not good, but its not bad and not fluctuating. Because of this, they took her out of isolation. This is definately a step forward and she was extremely excited. Of course, all of her school friends that now come to visit may be disappointed because they don't get to dress up!! They discontinued the IV antibiotics and are putting her on oral antibiotics. Most of her blood numbers have stabilized, however her clotting is still really high and her lack of clotting is reflecting that the liver is not functioning in that aspect. Her bruising is actually getting worse, but everything else is looking ok. No more blood transfusions for now. They are putting her on iron pills and continuing the diuretic and Prednisone (steroid).
A Ray of Hope! :)
The transplant surgeon came by and spoke with us this afternoon. He does not wish to transplant her at this time. He is looking at all of the factors and he doesn't think she needs one immediately. He did tell us however that her attending Teams may look over all the lab results and decide it is needed if her INR does not go down.
The transplant team will be visting up over the next few days in order to do a work up on her and get paperwork prepared and get her in the system so that she is able to be put on the transplant list if in case the drug therapy does not work.
It seems to be the course of action now is to continue the drug/steroid therapy indefinately until such time it is determined the therapy is not working. The hope being that she will go into remission sooner rather than later. Hopefully they can get the clotting going. We felt like what we were told yesterday was that either way it goes, Kayli is going to be on medication for a very long time. They are keeping her at least until Monday, if her numbers continue to improve and if the INR goes down, there is a posibility she can go home on Monday on the steroid therapy and be monitored closely until something happens one way or the other. On Monday however if her numbers do not lok better, they are talking bone marrow biopsy as well as some other treatments.
Thats all I have for now. Mark stayed with Kayli and I am heading down there now to try and make it in time for her attendings to round with their latest news.
Kayli did have some visitors last night, members of the Liberty Belles (Oak Ridge drill Team)...she said now all she needs is some guys from the football team! LOL
The most exciting for her was her English teacher Mrs Miller who apparently has a connection to the Astros- Mrs Miller brought Kayli an autographed Jeff Bagwell jersey!!!! Kayli was ecstatic!!! Kayli LOVES Jeff Bagwell, her favorite Astro player of all time. Also, when next season starts, the Astros have invited Kayli to go down on the field prior to a game and meet the guys!! HEAVEN!! Her sister was very jealous! :)
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