The Hospital Threw Out My Son’s Medication And Now We’re Stuck Here. What Can I Do?

Any help is appreciated! Location: NYC

My infant son (7 months old) has a serious form of epilepsy, so we’re in and out of the hospital frequently. This admission, they started him on a high-dose steroid - the plan was to be in for 2-3 days while he got started on it to make sure he reacted well. They requested we bring the medication ourselves because it isn’t stocked here.

This medication took ~4 weeks to obtain via a specialty pharmacy. The retail cost is $100,000 for a four-week course. We brought the entire thing with us, which was 3 vials, because we didn’t know what the dosing is. Upon admission the nurses took the meds from us to bring to their pharmacy for refrigeration.

Now we’re ready to be discharged and have just been told they can’t locate the remaining vials for us to go home with. They believe they were accidentally discarded. So we’re essentially stuck in the hospital while my son tapers back off the medication (not an easy task for something that affects your brain chemistry…) and then he’ll have to come back in again to restart it. Unless they can somehow obtain more for us in a very expedited manner.

I’m so frustrated and also heartbroken because we love our doctors here. But having to stay in the hospital affects everyone’s quality of life - not to mention the additional complications that come with having to change the planned regiment of this medication. Is there any action I can take with the hospital?