March & April 2023

After we were discharged from Hopkins, we cared for Jack at home.
We were stressed, scared, and had a lot of PTSD - as expected.

During the day Jack seemed okay - he was playing with toys, eating, and just relaxing. But at night, it was odd. He experienced extremely high heart rates, sleeping but dripping with sweat, neurological spasms and general cries & whines. He was in bed with us for most of the spring - but we kept praying & caring for him.

He would need sleep and they warned us he would - but as per Jack’s usual - no chance on a nap.

Typically he’d just fall asleep on the floor while playing or at the table if we went out for dinner.

Through physical and occupational therapy, speech & swallow therapy - we started to see Jack come back to normal. Looking back, the recovery was quite fast & miraculous.

Every spring break we head down to Seaside, Florida for a week - and we decided to do it. And we were so glad we did. It was a great trip. At the end of the trip though, we started to see that swimming in the ocean and the pool would lead to another upper respiratory issue (due to his vocal chord paralysis and aspiration) - and summer was about to begin.

At this time, we had no idea what the next few months would look like or how bad it would get.