Day 100

• WBC is 2230 (4500-11000)
• Neutrophil count is 2040 (1500-7800)
• Hematocrit is 32.2 (36-46)
• Platelets count is 42 (150-350)
• Transfusion scorecard: platelets (71); blood (34).

A lot to update, as yesterday was NOT a good day, by any means.

Denise complained early afternoon she was not getting enough air. 90 minutes later, after some blood gas tests, a CT scan and an increase in oxygen, she was being treated for pneumonia. This most likely happened due to some ginger ale going down the wrong pipe this past weekend; she is very weak and can barely sip water through a straw at the moment. The weakness is most likely caused by lack of nutrition (and the pneumonia), and I suspect the doctors will get more aggressive on fixing that issue today.

The other development yesterday was regarding the CMV infection in her lungs. If you will remember from previous posts, it never once showed up in any blood tests, and was only found from the biopsy of her lung. Apparently the blood tests now are being run on different, more sensitive equipment in the newest part of the hospital that just opened, and the blood test yesterday did show signs the CMV still exists. So guess what? We are back on another round of the $12K bottle of Cytogam--7 doses; each dose administered every other day over the next 2 weeks. I guess we are not leaving "in the next week or so."

She had a rough night last night, at least from the nurse's perspective, as they had a hard time waking her up, and an even harder time getting her medicines in her since she had so much trouble sipping water through a straw. Of course, the other concern here is she struggles with sipping through a straw and the water gets into her lungs.

So, as Day 100 at Johns Hopkins begins, we have 4 issues: Nutrition, CMV, pneumonia and lack of mobility.. I have no doubt Denise will take these on just as she has for the past 99 days, and her will and strength will allow her to get through this. I will keep everyone updated as more information becomes available.

Factoid: The average child in America watches over 40,000 television commercials in a year, or over 100 a day.