Our Journey with Infantile Spasm: Part 4

Visitors like Aunt Lauran made the hospital stay better.
We were allowed to take Josiah home from the hospital on Friday, July 29, six days after he was admitted. The ACTH arrived at our house that morning and after some long hours of discharge paperwork we were able to leave. Our first stop was the pharmacy to get Josiah Prevacid (for stomach upset that could be caused by the steroid) and a back-up seizure medicine in case he had a long-lasting seizure at home.

 

It helps to have a good daddy in situations like these.
We arrived home exhausted but glad to be out of the hospital. Josiah seemed happy to be back in his own bed!

 

Josiah loved getting an extra visit from Nana.
Thanks to a generous friend, my mom was able to fly out two days later. I knew I could use her support as we adjusted to life with Josiah on ACTH. We anticipated moodiness and a raging appetite.

 

We gave Josiah his ACTH shot every morning. Kevin was great at administering the shot, and Josiah handled it like a trooper (as long as he had a bottle). We even got some fun Band-Aids to make the task a little less dreary.

The first week after Josiah started ACTH things seemed to be looking up. His seizures stopped completely within a couple of days and he seemed to have some of his old spunk back. He even shared some giggles with Nana.

On Wednesday we took him to Dr. G for a follow-up EEG. The doctor was concerned because Josiah's brain activity had not normalized as it is supposed to within a few days of starting ACTH. Dr. G was still seeing some hypsarrhythmia—or disorganized, chaotic electrical activity in his brain. The hypsarrhythmia could be evidence that the ACTH was not working, which would lower Josiah's chances of full developmental recovery.

We left the appointment very discouraged. The worst part was not knowing what would happen. Would the seizures stay away? Would Josiah recover developmentally or would he grow up with moderate to severe special needs? The doctor couldn't offer us any answers. "We'll just have to wait and see," he said.