Sunday, January 22, 2012

Day +24

Piper is feeling much better and acting like the little girl we brought to this hospital. After sleeping through the night last night, she woke up happy and was in a playful mood most of the day. Lots of giggling and playing. We got up and out of the room for a few hours today, but her little legs still seem to be weak from the two weeks or so that she hasn't been able to get down and do much. She has been eating some. Not much,but some. The Dr. has talked about cutting her TPN and lipids back some in the next few days hoping that that will stimulate her appetite. Her mouth sores seem to be gone and she is at least comfortable putting food in her mouth. Tomorrow they may cut off the continuous drip of pain meds, but leave the button for her in case something should happen and she were in pain.
All in all her doctor is happy with how she is doing. She is producing white blood cells and her body is holding it's own with her platelets. She is still getting neupogen, which helps her body to produce these cells and when they cut that out we could see a significant drop in her white blood count. When we were first admitted we were told that three days in a row of an ANC over 500 is considered en-graftment. This is only half the truth though. Yes, it is en-graftment, but she could be en-grafted with donor cells, which is what we want to happen, or she could have en-grated with her own cells again. Dr. Chiang seems fairly confident she is en-grafted with the donor cells because we did see some signs of what he called en-graftment syndrome. That would be the rash she had over the last couple of weeks. We are more than hopeful and a somewhat confident that she is growing donor cells, but there is no way to tell just yet. Her blood will be tested sometime around Day +30 and will take two weeks to get back.
In other news, PJ has been running fevers. That is one of the things on the list keeping us from getting out of here and into the Ronald McDonald House.
She hadn't run a fever while I was here until about 6p this evening and she has run another since then.
Piper is doing great for what she has been through. She is still a happy little girl and such a sweetheart. I will close this post out with a picture I took of her today and edited with Instagram. It is hard to get her to smile because she makes these funny faces where she squinches her nose and eyes and you can't tell if she is smiling or not. So, this one is super cute for the simple fact she is smiling. This is representative of her demeanor today despite fever and weak little legs. I am sure I have forgotten a lot of stuff, but her fevers and and en-graftment of donor cells are things we ask for continued prayer in. Thank you to all who have brought us meals, sent cards, and just remembered Piper in your prayers.


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