Thank you all for praying for us, we have needed it. My spirits were lifted today and I felt held up by your petitions to a God who hears. Thank you.
Overall, Esther is doing okay. She's been spiking a fever each day and one of the requirements to go home is to be fever free for 24 hours. Each round she's been admitted for a fever but never had any infection to go with it. The doctors have said some kids just get fevers because their immune system is so compromised and their counts are so low.
When admitted for a fever when she's neutropenic (ANC below 500), she is automatically put on antibiotics as a preventative measure. When she has no immune system, any infection can become dangerous very quickly, so it's better to be safe. When she was admitted to the PICU after reacting to an antibiotic, they watched her closely with the same antibiotic last time. With that last time she had a similar, less severe reaction, so this time they decided to give her a different antibiotic.
She has been having some stomach pain and diarrhea and the antibiotic may be contributing toward the pain. Also, because she's been not eating or drinking much the last 12ish days, her body is lacking nutrients and electrolytes. Some of that she's making up with IV fluids that have some extra fats and electrolytes in it, but the rest she's trying to make up in supplements, namely magnesium. If you've ever taken magnesium, it's not fun and is only adding to the stomach pain. I asked the nurse to stop the magnesium unless it is very low in the morning. It felt good to be assertive.
Yesterday Esther had both a blood and platelet transfusion. Her blood developed a heat sensitive antibody, so she needed a blood warmer to infuse the red cells into her body. It was a long infusion, over three hours. This morning her platelets counts were low and she got a blood nose similar to the one that scared us half to death. I was quicker to know how to stop it and to be clear that trying affrin or ice first isn't the answer, she needed those platelets right away. The nurses today were great and it might be one of the first times I've seen the hospital be fast!
Tomorrow morning Esther will have a CT scan of her belly to look for any infection that has not shown up on her x-rays. At this point, it would only be something like when her own healthy bacteria has escaped into other parts of the body.
Now it's time for bed, it has been a long day and my head is bobbing. Goodnight!