october 15th, 2012 (part 1)

Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

October 15th, 2012 - part 1

Every day that we spent in the hospital was emotional. But by the time October 15th, 2012 ended I felt like I had run a marathon without the satisfaction of reaching the finish line.

Muriel was our nurse. We knew that Matilda was going to have a procedure sometime that day to have a new line placed, they said sometime in the afternoon. But I knew something was up when Muriel woke me. She usually kept the area as quiet as possible in an attempt to let me sleep. On more than one occasion I felt her place an extra blanket on top of me in the early morning, and on the best days I would wake peacefully with Muriel sitting in the room keeping watch over Matilda. It was 7am and the OR had just called for Matilda. Muriel was not her jolly self, hustling to get everything prepared. Matilda was shuffled to a traveling bed and left waiting in the hall. Everything was still and quiet.

Tyler had slept at the Ronald McDonald House and was not back yet. I was nervous. No procedure could be taken too lightly with a baby like Matilda. At any moment something could go wrong and it would be over. I stood next to Matilda in the hall, taking pictures, hoping that they would not be my last. I didn't want this time, without Tyler, in the hall, to be the last.

We were waiting for her blood. You see, the liver makes coagulants that help clot your blood, so anytime they planned on cutting Matilda open or placing an IV in a major vein or artery, they had to prepare for and expect significant blood loss. Whatever came out, needed to be put back in. She also needed fresh frozen plasma to boost her coagulants prior to any procedure. And her blood orders always seemed to take forever.

The blood came and we were ready to go. Muriel and I started down the hall behind Matilda who was led by the OR nurse. When we got to the elevator the OR nurse told Muriel she was no longer needed. I panicked. I didn't know where I was going, who I was with, or what was going on. Grabbing my hand firmly, Muriel told me she would see me soon. I was on my own.

When we got to the operating room, all at once the surgeon appeared bouncing around asking what took so long. He was distractibly loud and speaking to the nurse, while the anesthesiologist gave me the run down, asking all sorts of questions I did not know the answers to. I was not Matilda's nurse. I did not feel comfortable giving information that I was not certain was accurate. I did not know exactly how much she weighed. I did not know what percent oxygen she has been using, or the type of nasal cannula. I did not know. I wanted Muriel or at least Tyler.

The anesthesiologist's converse shoes danced back and forth as if he was gearing up for a race. He began talking to me like I was uneducated. I asked if he would be able to extubate Matilda before returning and he laughed at me and said that he would hope so, but that he would also hate to have her stop breathing on the way back the room. And then he said something along the lines of, "I can just put my hand by her nose to check her breathing when we are in the elevator." He had the most arrogant half smile the entire time he was talking to me and kept waving the pen in his hand around because he just wanted me to sign the waiver and get on with things. We were late bringing Matilda down, and he was clearly annoyed.

I signed the consent form and they got to work on Matilda. Nobody asked if I wanted to say goodbye. They just took her away. As I stood there in shock as to what had happened the surgeon brushed my arm and said, "Don't worry this will be easy. I remember when I put the IV in her neck on the night she came in. That night was rough, this morning should be fine." I wanted to throw up, she never had an IV in her neck, this surgeon had never touched Matilda. I told him he was mistaken, but he would not relent. For five minutes we went back and forth, his last words were said with a snicker, "I remember, I was there." And then he asked one of his fellows to escort me back to the PICU.

My heart was racing. I felt like I was in a dream, the worst kind of dream where you are screaming and no one bats an eye in your direction. But, this wasn't a dream, it was my baby. I was terrified. How could they not know who their patient was? How could they not listen to the mother? How could they be so rude? In my head I was freaking out. I was screaming and making a scene. But in reality, I was politely walking down the hall, making small talk, and smiling in the elevator. Once we got to a familiar place in the hospital I told the fellow that I could make it the rest of the way. And then I grabbed her hand and asked her to personally take care of Matilda. I told her that I didn't trust them and to bring my baby back. She promised that she would, and gave me the most sincere hug I have ever received.

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