September 30th, 2012 - nyc, part 1
New York City never seemed so quiet and organized. The cars parted, the people stopped, Matilda had made it. We parked on the side of Fifth Avenue across from Central Park. We headed up to the Pediatric Intensive Care Unit and were greeted by two nurses waiting for Matilda.
I stood holding onto my diaper bag while I waited for the next move. I thought that I was in some sort of holding area and would be moved to a room. The space I was standing in had one wall full of medical equipment, another wall with windows facing Central Park, a clear half wall (open at the top and bottom) and that was it. It was a small space and the paint was chipping off the wall. Turns out, that's where we camped out for the next two months.
I was trying to process everything and at the same time the nurse was asking me all sorts of questions. I felt distracted and unfocused. I was afraid. I was alone. I took a deep breath and asked God for strength. I needed to focus. Tyler is always with me, he is the smart one, he is good at understanding medical terms, numbers, outcomes. I lean on him, but I was alone.
The nurse left to update the doctor. I posted this on Facebook, "We are at Mt. Sinai Hospital in NYC. We have not yet spoken with the doctors so I am not sure what the plan is. Tyler, my mom, and Parker are on their way. I am waiting for the okay to hold Matilda."
My phone kept ringing. Friends and family wanted to ask if there was anything they could do to help. They wanted to make sure I was okay. I could not answer my phone. I knew that the moment I heard a familiar voice, I would lose it. And I was trying desperately to hold myself together. Tyler's mom texted me asking how Matilda seemed. I made this video and sent it as my response.
7pm hit and it was time for a change in staff. Which brought more questions and tests for Matilda. Everything seemed to be happening so fast. I was proud of myself. I was taking in all the information and asking lots of questions. I remember feeling like I had a handle on the situation. I was told that Dr. Yung - the attending in charge of the PICU - and other specialists were gone for the evening, but would look at Matilda first thing in the morning.
I spoke with the resident who would remain in the PICU overnight, she was young and really down to earth. Justine recalled that night:
"I had been working in the PICU for a couple of years by the time I met Matilda so I was fairly confident about what I did and did not know. I said goodbye to Steve Yung that evening and, because we were expecting Matilda, I assured him I'd call him right when you arrived. When I first saw her I was relieved by the fact that she was breathing on her own but I was slightly uncomfortable with how her pupils reacted to my penlight. I remember that you were terrified but that you were calm and trusting and communicative. What I remember most about you is your unwavering strength in the face of what was one of the most terrifying nights of your life."
I felt really safe and comfortable with Justine. She was obviously concerned about Matilda's liver numbers, but she also had an urgency about her actions that told me something more was going on. I felt like Matilda's appearance and demeanor were fading rapidly and was relieved immediate action was being taken. Again, Justine recalled:
"I have learned, through my training, to trust my instincts about many things. The reason I had a sense of urgency the night I met Matilda was because though her ammonia was high, I didn't feel like her unwillingness to respond to me appropriately was a result of that. I remember looking at her blood gas (of which I've looked at hundreds) and being confused. It didn't look right to me. I will actually never forget it because I hadn't seen anything like it before. I took a photo of it on my iPhone and I texted it to Steve and his response, 5 seconds later was, 'I'm on my way.' Our fear, at that moment, was that she was at risk of a brain herniation."We headed downstairs through long empty tunnels for a cat scan. I snapped a couple photos with my phone before being asked to leave the room. On the way back to the PICU, Justine said that they did not find bleeding in the brain, which was good. But when we got back upstairs and the attending introduced himself and asked to speak with me in another room, my stomach sank. I was told that he had gone home. I took a deep breath and prepared for the worst.
