BJ is still cooking. His temp goes up and down all day and night, still reaching 104, and down to 100. His white blood cell count fluctuates between blood draws at midnight and noon. His WBC count at midnight last night was 60k, and at noon today it was 42k. We want to see that number continue to come down. His blast percentage is at 96%, which gives us a further degree of anxiety, but is not something his doctor is concerned about right now. His platelet count took a dive from midnight to noon, going from 41k to 28k. He just realized his gums were beginning to bleed again, so he'll be getting a unit of platelets shortly. With the presence of bleeding, they won't check the level, but will just order a unit, and he'll get the transfusion.
Since Sunday night, BJ has had blurred and double vision, and seeing flashes of light. He had an MRI last night and there was nothing abnormal. Dr. Martin ordered a voriconazole trough level today, and it was high. It should be between 2-6. It was 10. A 'trough' is the level of the medication in the blood before the next dose is taken. Voriconazole is the anti-fungal medication BJ has taken since August when he contracted pneumonia from breathing in aspergillus fungus spores while immunocompromised. Dr. Martin discontinued his IV voriconazole until it's back in the normal range. The high reading could be contributing to the vision problems, nausea and vomiting he has been experiencing the past couple days. He was also very lethargic, had some decreased mental status and slept most of the day yesterday. That seemed to be a little better today, but he is not yet entirely mentally alert.
Today, Dr. Martin decided to start BJ on TPN (total parenteral nutrition) and lipids, which is IV nutrition and fat. BJ hasn't eaten anything in 2 days. It's important for his new T-cells and for his body to have protein, calories and fat to be able to keep fighting. When he is able to eat, the TPN/lipids will be discontinued. His door was decorated today by Child Life. We opened the door up into the room so he could see it....he approved. :)
Still waging war, and BJ will win.
Please keep sharing his story and keep praying.