After days of our encouragement, the doctors agreed to allow Kinsey to be treated as an outpatient. She goes into the clinic every day (7 days a week) for 4-5 hours a day. After a total of 7 hours of IV drug administration training, Audrey and I now give Kinsey meds 18 hours a day. I fought for her to have some window of free time so she could play and turn around or go to the bathroom without tangling in tubes or being attached to us (as her backpack is too heavy for her to carry) and I won. The trade-off is that we have to give a few of the drugs in the night. So far, I am staying up most of the night giving meds and Audrey is taking her to the clinic. We will probably start trading off soon every other night.
Yesterday, Audrey spent 2 1/2 hours at the local blood center donating platelets for Kinsey. Because she still needs about 2 platelet transfusions a week, she has been exposed to multiple donors and when the blood center doesn't have single donor platelets, she is exposed to multiple donors with one transfusion. After time, you build up resistance to these foreign bodies and can begin to reject them. Therefore, getting all platelets from one donor is much better. Audrey's platelet count was so high, they begged her to give for other patients. She has agreed as long as Kinsey is covered first for now. So this is very good news, too. Each donation lasts 5 days and the plan is for Audrey to go in a couple of days after each transfusion so the next batch will be fresh and ready.
And finally even more good news: Kinsey's neutrophil count was 130 yesterday beating its own record set the previous day of 90. Today, she left for the clinic saying they were going to be 160 and I told her we'd be happy as long as they were higher than 90. We know from experience how these numbers can be promising and then drop dramatically.
Overall, she is doing well. Still not eating which is a big part of her IV meds (IV nutrition). Still has a lot of nausea. Still tired and low energy much of the day. Still has signs of infection on the CAT Scan, though it is looking better. Mouth still much better. And the biggie for now continues to be no fever. Two things that will make or break her situation in the next few weeks: white cell counts and fever. Any sign of fever and she goes back to the hospital immediately. If the white cells can't continue to climb and exceed 200 for the neutrophils alone, she will be going to transplant. So we wait, we watch, we pray. Today, we are very hopeful. I told a couple of friends earlier that I talked with a woman last night who has a son in a coma. He turned 22 since he's been in the 11 week coma following a fall, just a freak accident sort of thing. She was pasting his photos into a scrapbook, this young handsome guy who will likely never wake up. They are giving him until June 19 before they discontinue surgeries, etc. and put him in a nursing home. She, too, is waiting and watching and praying as the clock ticks. She doesn't seem very hopeful. I felt so sorry for her and so glad for us to see Kinsey running and playing with Jillian and Kailee (the other 5 year old from Albuquerque with AA here) as we talked. And yet I realized, her son could wake up in the next few days or weeks and Kinsey could still die. But today it doesn't look that way. Today, she woke up joking with us and debating about which video to take to clinic to watch during her hours of transfusion. Today, she is looking forward to seeing her grandpa and grandma (my dad and stepmother) and her cousin Brit, all of whom are visiting this weekend. Today, she asked Audrey to stop by the fountain here at Kathy's House so she could make a wish. Audrey said they were running late and could they do it when they came back. Something in Kinsey's face must have told her not to wait because as they went out the door, I heard Audrey say, "Or we could just do it now."
Best not to wait. For anything you want to do or see or say. Don't wait until tomorrow to tell someone how much you love him or her. Don't play the game I always have of "I will make it up next weekend." Best not to wait. So we will appreciate this good news for today. Enjoy her laughter and endure her and Jillian's typical "sisterly feuds" and be grateful she feels well enough to argue about which doll is Cindy and which is Sara. Today, we have good news and good news.
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