Still in hospital.

A fortnight post-op my oldest friend came to visit. She came up from Oxford. She came before any of my family came. My Mother was ill, and couldn't come. I don't know why nobody else came. our older two children were being passed between relatives, Andy brought them into visit, and they seemed absolutely fine, much to my surprise.

Andy was still travelling back & forth everyday. This had all happened at a crucial time at his work-place. They were in the process of moving the whole foundry from one town to another. It was a small family firm, and Andy had been with them since university. They were very supportive, but his role was crucial to the move and sometimes he could only visit for a few hours a day.

We were getting better at recognising the signs that Emma needed suctioning, and better at changing the trach. There was a trached baby in the next room whose parents weren't finding it so easy. Mom couldn't do the tube change, and the Dad would shout, and then she would cry. It was horrible to listen to. Once the Dad had gone home, the nurses would stay and comfort and talk to her, they were incredible.

Every now and again a nurse would say "This room was M's room, he left the week before Emma came." They all talked fondly of M. He had had a trach, he was three years old, he had come to the ward when he was born, and had not left until the trach was removed when he was three. The nurses had photos of him, and of how the room had been turned into his bedroom and playroom. This wasn't going to happen to Emma we were going to escape!

A telephone call came for me, it was someone from the Community Paediatric Nursing Team. Just saying hello, to say they were the team who would be organising equipment and support for us once we were ready to come home "in a couple of months." I replied that things were going really well, and I thought we would be ready for home sooner than that. When I got off the phone, I found the portable pay phone and called Andy and told him about the call. He had a similar call at home that night, and he gave the same reply. He asked what they were waiting on, to order the equipment needed. They needed a list from the hospital, the next day he asked Sister T to help compile a list. He then faxed the list to the Community Team. The escape plan was started.

A few days later I took Emma out of the hospital and into the city, with a nurse at my side. It was terrifying. I couldn't hear her breathing, I had to keep looking at her face. I remember I had to suction her in Boots the Chemist. My legs were like jelly. The following day I took her down to the hospital shop by myself. We were stretching our wings. The Nurses started talking again about visits home. I explained with a two year old at home, I wasn't willing to cause him more upset by coming and going. When we went home it would be for good. I don't remember who suggested it, but it was decided that when we were ready Emma & I would move into the parents accommodation room for a weekend, and then if all went well, we could go home. In the meanwhile we were moved into our own room on the ward. Andy & I took over all of Emma's trach care, the nurses were there if we needed them, but the door was shut and they knocked before they came in.

Several separate memories that I don't remember where they fit chronologically are very bright. Meeting the Hospital Chaplain in Intensive Care, late at night, he was so kind, and his words, just a chat really, gave me so much comfort. When we were later back on the ward, he seemed to remember us, and gave me directions to the Chapel where I escaped to for a few minutes whilst Andy was with Emma one day.

Another memory was talking with Mr P about the results of the scans. The hemangioma was present in Emma's skull, in the bones too, creating a honeycomb effect in her bones. It went down into her chest, but it wasn't known how far down, she would need another scan to determine that. It was hard to put that information and the baby lying in my arms together. I cornered a Snr Registrar late on the Sunday afternoon, and grilled him about whether this meant there was a possibility that Emma could be brain damaged. He said not, but her eye sight and her vocal cords maybe damaged.

That's enough for now, next time I will write about going home.