Transcript of Our Life-Changing Moment:
When my son was 7 years old, he suffered from Pediatric Acute Liver Failure (PALF). His liver went into complete failure and as a transplant team prepared to remove and replace his dying organ, he began to slowly recover staving off the eager surgeons. At the time, no clear etiology was established and it was surmised that it may have been triggered by prolonged dehydration due to a virus.
Seven years later in the summer of his 14th year it happened again and my son had a stroke.
After the first bout of PALF, the standing treatment protocol was for us to immediately go to the closest emergency room if our son began vomiting to ensure his liver was not failing, and to get proper intravenous hydration. We had to do this a few times over the years, and he always quickly recovered, but not this time. His liver enzyme numbers weren’t dropping as quickly as they had in the past, and he just wasn’t improving. He was in the Children’s Hospital in Philadelphia, known as CHOP, and we eventually moved from the intensive care unit to the gastrointestinal floor as the doctors decided what to do next.
One night, a nurse came in and took his vitals, as usual, but something did not look right to her. She checked once, then again, and then called in a colleague. She said she didn’t like the level of oxygen in his blood, and that something seemed off. She eventually called in a crisis team and they decided to move him into the Pediatric Intensive Care Unit (PICU). I thought maybe they were just being overly cautious, and decided to take a shower since all seemed calm for the moment. I went to the family room reserved for parents whose children are in the PICU, and before I could get into the shower, the phone was ringing. My husband was calling me frantically, telling me to get back to the PICU immediately. I ran as fast as I could and I saw my husband in the hallway, on his knees in shock and crying. I rushed in to my son’s room, and saw his bed surrounded by doctors and nurses frantically working on my son.
I heard the words coming out of my mouth, “What is happening?!?” “What are you doing to my baby?!?”
A doctor yelled at me to get out and let them work on him.
I was in shock.
I went to my husband who could barely get the words out, “He’s having a seizure!” The trauma team intubated our son and put him into a medical coma. We were told that he had experienced Status Epilepticus, which we later found out was caused by a stroke. He seized for 30 hours.
They could not tell us if he would ever be awake again. My mind desperately searched for the words I last said to my son, thinking they would be the last he would have ever heard me say.