We went back up onto the ward, and Sister T came to see us. She asked when I had last eaten a proper meal, when had I last stretched my legs? It had been a few days, so with Andy there, I was ordered off the ward given directions to the canteen and went in search of food. I found the canteen, it was a bright modern space. I picked up a tray from a pile at the start of the counter, and then dropped it to the floor. I knew instantly that was something was wrong. I ran to the lift, along the long corridor on the top floor, and through security and into the ward. The was a crowd of people around Emma's bed. Mr P walked into the room behind me, and Sister T who was at Emma's bedside said firmly to him "I'll be having none of this on my ward! We nearly had a tracheostomy performed on the ward. I'm having none of it! Easter holidays or not, I'm not having this little mite wait over the holidays." From then her levels were erratic, and she needed additional oxygen when she fell asleep.
Emma stabilised, and Andy was able to explain that she had started to cry, and her heart rate had rocketed and her oxygen levels had plummeted and she had turned blue. Sister T cleared the room, and Emma was handed over to me, Sister T made sure I was sat comfortably and suggested that Emma might like some milk as she had had a bit of a shock. I sat and fed her, and shook. Andy stood with his arms around my shoulders. I decided that I would not be leaving her again, not even for food.
Prof M came to meet Emma that afternoon, she explained that she would be looking after the hemangioma management. That she was from the oncology department, even though Emma didn't have cancer, hemangiomas are a type of benign tumour. She was so kind, and explained she had treated lots of children like Emma, and there was a wide range of treatment available. We had to try to stop it from growing. The CT scan had shown that the hemangioma was compromising her airway. The swelling on her face was a hemangioma, it was around her left eye causing what appeared to be a squint. The red lines that were around her head and neck and ears were all hemangiomas. Emma was started on a very high dose of steroids. This should stop the hemangioma growing, but it would affect her immune system, and in the long term could be detrimental to her health. Prof P explain that there was no choice. Left alone, the hemangioma would kill Emma very quickly. The further extent of the hemangioma would be revealed by an MRI scan the following morning.
That was a general anaesthetic. It went well, and she slept for most of the day, not wanting to wake-up. It was Good Friday. The baby boy had been moved, he had had his operation and was recovering in intensive care. The ward was very busy. There had been something in the news about the Bristol hospital paediatric cardiac unit being closed. I remembered bits & pieces as I sat there watching Emma asleep, for hours. An unusual number of babies had died, and the unit had been closed whilst there was an investigation. That was why the ward was heaving. Babies kept arriving, before their mothers. A little girl was brought into the room we were in. Her father came with her, a tall older man. He didn't speak, or make eye contact, he was in total shock.
Sister T came and explained that Emma was booked into theatre on Saturday morning. Mr P was in London but would be coming back especially to do the operation. Later that evening the Consultant Anaesthetist came and talked through the procedure. He spent a lot of time with me, talking through what would happen, he even explained which anaesthetic he was going to use, and why he chose that particular one! He explained that there would be a meeting in the morning prior to the surgery, they would all sit and plan what was going to happen, and what they would do if things went wrong. That Emma would go into intensive care to recover post-op and would be brought back to that ward in a day or two.
That evening Emma rolled over for the first time! A mile-stone, reached in a little metal hospital cot. I don't remember which of these people said it, but someone said that Emma may not be able to breastfeed after the trach was in place. They hadn't looked after a baby with a trach who had breastfed. I sent Andy home on a mission to find out if it was possible. I couldn't sleep, I lay Emma in the little cot and sat on the camp bed watching the numbers on the monitor, she looked smaller than ever with the little oxygen mask over her face. She had her last feed at midnight, she was due to go to theatre at 8am.