Decompression Surgery

The morning of the surgery, Faith woke unwell as usual. My husband came in early so we could entertain Faith while we waited for her to be taken to the operating room. I could tell she was hungry and wanted her bottle. She was now on formula as I stopped expressing milk in December 2010. I felt trepidation, fear, are we doing the right thing? I wanted to cry. I dressed Faith in a new little outfit I bought. It was so cute, it was red and blue with stripes. At last we were called to go down to the surgery admission room, we entered, it was all white. There were four spots to sit and conduct observations before the patient was taken into the operating room. Nerves were welling even more in my tummy. I held Faith tight. I didn't want to let her go. We sat on the seat closest to the door near the theatres. The anesthetist said that we couldn't come in and stay with Faith until she went to sleep and I had really wanted to. Instead, a nurse came, picked Faith up and she was smiling and through the double doors they went. My heart sunk, had we done the right thing, this was wrong, I don't want her taken away from me. I cried. I hoped I had brought enough tissues. It was thought the surgery would take at least a couple of hours so we didn't need to go straight back to the surgery waiting room. We went to get some breakfast.

As we were coming out of the lift, the consultant neurosurgeon came in, he was holding a little blackish box with little silver dots on it. We assumed this must be the special instrument that was borrowed from the Melbourne Children's Hospital. I am pretty sure he knew it was us but he was on his way to theatre to operate on our little girl. How are we meant to function during this time! A bright spark that day was we got an unexpected but blessed visitor. As the hospital is a catholic hospital in each room there is always a cross hanging on the wall. The room we were in didn't have one. It is always a good reminder of what Christ has done for us by having it hanging there. It forces it into my mind. My husband mentioned it to a friendly lady at the hospital reception and we didn't think much of it after that. But that afternoon when our heart ached, our minds wandered and thought of what might happen. A man walked into the parent's lounge and asked for us, he came over and said that he worked in pastoral care and the lady at reception mentioned us. He was a little light in our darkness, he handed us a palm cross so we could always remember by holding it in our hand. How beautiful!  I held it tight and prayed and prayed.

A few hours into our day of anxiously waiting my mobile rang and it was Dr JC, the neurosurgeon fellow, my heart skipped a beat, butterflies rose, I started to sweat, and she said that they haven't started the operation yet as they have been unable to get a drip into Faith (the one from the previous night had tissued). The anesthetist was working very hard to get a secure line in so they could begin. We were thinking that they might be nearly done and they hadn't even begun. Tears welled in my eyes, back to waiting. After a while of aimlessly wandering the through the peaceful grounds of the hospital we returned to the parent's waiting room. There were families seating around all looking tense and stressed. Every now and then the room telephone would ring and someone would anxiously answer it and some anxious parent hastily disappeared out of the room. One by one, families came and left. We just waited! It was like time was standing still for us and everyone was moving on and we were left behind. I flicked through magazines, had a crack at the Nintendo, tried to read a book but nothing could help. I just wanted Faith. At last, my mobile rang and we were asked to come back to the surgery admission rooms. Remember to breathe! We hurried back to the surgery admission rooms and went in and the nurse showed us to a private room where we were to wait. What was about to happen I did not know. But I was frighten and started shaking a little. I felt like I had tuned out and was in a strange cloudy daze.

We sat down in a small room and a few minutes later, but it felt a lot longer, the consultant neurosurgeon came in. He was dressed in green surgical wear. He started talking and I suddenly couldn't look into his face, I was afraid of what I might see. Instead, I stared at the floor and my eyes traveled to his shoes. His shoes I can remember, suede black sort of colour and there was blood on them, blood, my Faith's blood. He was saying they got as far as the laminectomy (part of one or more vertebrae is removed) and Faith started bleeding, she had lost 100-150mls of blood. I hadn't thought about this before. He said that he'd rather come in and tell us that they aborted the surgery than say they continued and she didn't make it. This was serious. I felt light headed and dizzy. Faith had to have a blood transfusion and would be in recovery in about an hour and we could go and see her soon. I can't remember much else he said, as I was staring to much at his shoes. His shoes with Faith's blood on it. This was to much. Now, I urgently wanted to see Faith. My husband later told me that the neurosurgeon used another technique to see if that would help, he scored the dura. The dura is the thick outer covering of the brain and spinal cord. Dural scoring is a surgical technique where a series of cuts are made into the dura, but the dura is not completely opened. Now we had to wait for Faith to go to recovery.

Paediatric Intensive Care Unit (PICU) was a secured area. We buzzed in and got into the waiting area. It was a rather long corridor with seats all along it, a small play area and at the end a hand basin to wash your hands before entering and hand sanitizer too. I remember there was no hand towels to dry our hands. We sat down as it was all to much, I started to cry and my darling husband comforted me. There were double doors and single doors and then as I looked up I saw this little pale, very still baby go past and it was Faith. There were nurses and doctors wheeling her into the other secured area. Too much, this is all too much, her head was swollen and secured so she didn't wiggle. I could hear her panic cry. She needed me. Not people she didn't know. The kindly Dr JC, neurosurgeon fellow came in and said to me what is wrong? She said, Faith is ok and I said it is all to much and I just want to see for myself that Faith is ok. The lovely doctor reassured us and sat with us a minute. It meant so much she'd taken the time to sit with us. They needed another half an hour to settle Faith into PICU so we had to wait. So much for the half an hour it turned into at least two. We knew Faith was inside those doors and we were not allowed in there yet.We just had to wait again!