September 2 2014. Tuesday. Woke up at the Ronald McDonald house this morning and like everyday started our trek to CHLA.
I think by this day I finally realized just how bad Luca’s condition was and still having to be on life support. I didn’t go to practice this morning and I didn’t know when the next time I would even go. I didn’t want to miss anymore time with him at this point. So to this day, Luca had open heart surgery his first day of life and he coded his second day of life which caused another surgery, then they had to put him on life support. The life support machine was giving his heart and lungs a rest to try and recover and hopefully strengthen. We didn’t know a specific day or time when we were going to start weening him off. Doctors said they wanted to perform the surgery around a week after Luca initially got put on life support. If Luca wasn’t able to sustain a stable heart and lungs after being on life support for a week it was indications that he would have an even longer road to health.
Like everyday we wanted Luca to be as comfortable as possible. With all of the medications he was on he had never got to eat. Megan was still pumping and they would just put the milk in storage for when he was finally ready. He never got to eat though but this day we gave him a pacifier and baby instincts took over and he started sucking on it.
There weren’t many photos or videos from this day. By this day we were in a routine. Wake up and head over to CHLA and spend the entire day there with the occasion of going to get food whether it be in the dining hall or restaurants down the street. Megan never left the hospital once she was there in the morning and at some times we had to make her eat. Family and friends visited daily, we read to him daily, just spending as much time with him as possible. Luca was coming off life support in the upcoming days and they would have social workers coming in to visit us. Social workers help families with any problems in their lives such as mental, behavioral, and emotional issues. Talks were short and their main focus was making sure we were prepared for the worst. We felt that was a sign that Luca was going to die and didn’t really want to have much of a conversation.
My dad was scheduled to leave the next morning to head back home to Maryland to be with my nephews. So at night he slept in Luca’s room one last night.