Most of us who didn't have to work or called off stayed over the hospital in the waiting room. Me and my husband slept against the glass in the playroom. When we woke up my aunt linda was sitting there talking with my aunt denise. My poor mom left after 2 in the morning and went to work. We got our new badges for the day and went in to see sparkles. Her color was better, her ammonia was coming down. We met with the genetics team and learned of what this is. They had to wait for DNA but they were certain of the disease. Of course it was the worst one. CPS type-1. We were told anything past 12 months without a transplant is grave for these kids. Wow the transplant was so shocking. She needed a liver. On this day Dec. 7th we were introduced to SCAVENGERS. This army of IV enzymes eat the ammonia like pacman does to the blue ghosts. Savanah was on a no touch no talk rule so for many days we sat at her bedside just staring at her. These scvengers smell like pee. The smell was so strong that as soon as you came around the bend you could smell her room in the hallway.It was around Savanah had some issues and events along the way. But we bounced back. She was so greatly taken care of. As she got older she would take stroller rides through the unit. She would hang out with the gals at the nurses station. She loved Mary Poppins. Thanks to many kind nurses., my daughter is alert and the brain damage is minimal. These nurses are god's soldiers on the NICU. You couldn't find a better bunch of individuals.
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