A rough month

August has not been kind to my Maisie the Great. She's been getting progressively sicker since they we first came home from the hospital (kind of ironic.) After the nephrologist took her off all her medicine and she had to be rushed to the PICU for emergency respiratory failure, uncontrollable seizures, and severe pain. At first, we were able to control her seizures and her breathing long enough for her to get over HUS. She was doing really well for a few days, we took her home and then had the feeding tube fiasco and finally got home and were resting for, oh, five hours before she started seizing violently. These were not her normal seizures, just a few seconds long and/or isolated to a single hand/foot/facial muscle. These were full-body, tonic clonic or grand mal seizures. It was terrifying. She would pitch forward and shake from her head to her foot, foam at the mouth, her eyes would roll, and all I could do was hold her. This went on for four days. I called the epilepsy neurologist as soon as it became clear this wasn't some random, one-off thing, and she changed her medicine. We picked up the new prescription the next day, and it reduced the grand mal seizures but only to the extent that she is now constantly seizing in one hand, foot, eye, lip, cheek, something. The neurologist cannot see her because another patient is a state of emergency. His life is threatened, and our doctor needs to throw her whole weight behind this little boy. That's okay.

Maisie is in a lot of obvious pain. She cries almost constantly and has stopped speaking for the most part. As I write this my poor baby is slumped over my lap, wailing. I can do nothing for her. We don't know what causes her pain.