The day after we started suctioning I was told I had to go to a meeting with the hospital social worker. I found a nurse to sit with Emma and I went, I hadn't wanted to go, I didn't understand why I had to go. The Social Worker gave me claim forms for disability living allowance and carers allowance. I still didn't understand. Why had she given them to me? She seemed uneasy, she explained that Emma was now classed as disabled. My baby was disabled. No, that didn't seem right.
She then asked if I needed to make arrangements for our older two children to be put into foster care. Was this for real? Had I slipped into a nightmare whilst in the lift? There was no way any of my children were going to be fostered. She explained that a child with a trach would place a huge strain on my family and I should seriously consider it, Emma was going to be in hospital for many months. I asked if there was anything else she wanted to talk to me about, when she said no, but we needed to discuss the fostering more, I politely said that I didn't need to talk about it and left.
I ran back to the lift and to the ward. The nurse wasn't by Emma's bed, one of the lovely Italian cleaners was stood next to the cot cooing and smiling at Emma. She was breaking her heart, bright red, silently crying, soaked in tears. I picked her up and she calmed down. The cleaner explained that the nurse had to go, the nurse came in and explained that one of the heart surgeons had come in and she had to be with the parents to support and take in info about their baby's operation. I understood, but I was upset. After that I left Emma with Andy or Sister T whilst I ate or showered but that was it, I waited for her to sleep so I could go to the bathroom, and then I ran.
The next big thing was learning to change the trach tube. I didn't even realise that it had to be changed. There is a process. You have to set up everything before hand, then swaddle Emma, cut the tapes that held the tubes in place and remove the tube, someone else places a lubricated tube into her neck. Whilst the tube is out before the new one is inserted she can't breath. Sometimes the hole, the stoma, puckers and closes and you have to force the new tube in, or use a smaller tube. Then she gags and coughs, your hands pour with sweat and she is pouring with secretions. Then you have to tie the new tube in place with the most complicated knots! It is like learning to be a Scout! The first time this was done we watched, then we held and took out the old tube. Then we put the new tube in. I remember the nurse laughing at my shaking hands. They were all such good teachers. I felt sick each and everytime, but I was determined to learn how to care for Emma, she was my baby, she didn't belong to the hospital.
Towards the end of the week, whilst walking back from the bathroom, I bumped into a mother. She introduced herself, she was German, she asked if I was the mother of the baby girl with the trach. She whispered quickly that her son was in the next room. I understood her urgency, she wanted to get back to him. She quickly said that I was not to listen to the staff about needing to have lots of short visits home before we could be discharged. We had already been told about these, a few hours away, an afternoon, a day, a night, a weekend, and only then if we felt confident, and the hospital felt we were ready would Emma be discharged. The Mother told me that I needed to stand my ground, she had been there with her son for almost 5months, and she realised now, that there was just no need. She told me to master the trach care and run! She smiled, squeezed my arm and left. I saw her leave with her son the following day. I was so grateful for her words.
One afternoon I left Emma with Sister T to get a quick shower. There was a shower room on the ward. When I came out, I saw Sister T standing at the nurses station with Emma. I noticed the tapes of her trach had been cut and Sister T was holding the trach in place. Another nurse was holding a dressing pack to the back of her neck. Sister T explained that she had noticed that the skin on the back of Emma's neck was breaking down. She showed me, the skin looked like pink tissue paper. How was it staying together? I knew by now if it started to bleed, it would bleed a lot. This started another bit of trach care, we had to place padding around the back of Emma's neck underneath the tapes that held the trach in place. Tying the tapes became impossible, so we swapped to some much easier velcro tapes for a while.
Andy & I were taught trach-CPR, basic trach care, how to recognise an emergency situation, how to give her meds. It seemed to be going well. Mr P was very pleased with the reports the nurses were giving him on Emma's and our progress.
There was just one thing still bugging us. Emma was still silent, our chatty babbling baby was still silent. Andy was getting ready to go home one late afternoon, the sun was shining and the windows were open. The atmosphere on the ward was relaxed, someone had turned the radio up. Sister T and a Jnr Doctor popped in, and asked if everything was alright. I said we were all fine, and remember casually mentioning that I understood Emma's throat must still be sore, but surely she should be making some noise of some sort by now. Sister T looked at the Dr and then back at me, "Has nobody explained, did nobody tell you? Sweetie, she's not going to speak, not while she has the trach." I asked about afterwards, and was told time would tell, hopefully the hemangioma wouldn't damage her vocal cords, but it was early days. At that time we thought Emma was expected to have the trach for a year. This upset me more than anything. Sister T went and fetched tissues, and left me and Andy alone with Emma. I sobbed. I felt this was the last straw. Emma had a hole in her neck, a benign tumour growing unchecked, her face was becoming more lopsided everyday, and now we were being told she may never be able to speak.
Andy had to go. He had to collect Lizzy & David from my brother's family. I remember walking the ward to the door, and him looking back at me through the shut security door with his eyes filled with tears. The cruel thing was that as Sister T had explained, playing on the radio was Ronan Keating' "You Say it best when you say nothing at all."
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