Bump in the road

Josh is back in the pediatric ICU (PICU), but appears to be doing well after a difficult night. He experienced unexplained shaking, which the doctors call "rigors," and sweating for about 1.5 hours last night at around 8 p.m. The rigors were not part of any seizure activity and he was conscious throughout. As a result of this, he was moved to the PICU for the night. Tests found slightly elevated levels of white blood cells, but the doctors have concluded it is unlikely that he has an infection. Nevertheless, they are giving him two new, broad-based antibiotics.

The doctors don't have a medical explanation for the rigors, only theories. One doctor said it could have been a withdrawal type of reaction to being taken off his anti-seizure meds. Dr. LaJoie, his regular neurologist, does not think so. She thinks it was a perfect storm of different variables -- extreme pain plus anxiety and stress over a number of things. Shortly before the rigors, Josh complained of a headache that was a 9 on a scale of 1 to 10. He was also disappointed that he would have to wait until Monday to have the electrodes removed.

So he will remain in the PICU for the time being. Josh actually prefers it there because the nurses are very nice and there was a nurse at the previous spot that was stressing him out. Unfortunately, the PICU has certain limits that make it less vistor-friendly and we will all have much less access to our cell phones and laptops.
The phone in Josh's PICU room is 212-263-1931.

Robyn and I are really worn out today. We split nighttime duties, sleeping at Josh's bedside in the PICU.