Saturday, 21 July 2012


Going home was strange. It was the goal. To get Emma home and make things normal. I don't think either of us realised how things were not going to be normal for a very long time to come.  I remember sitting in the car on the way home, the car piled high with Emma's belongings and medical equipment. I was excited, but also sick with apprehension. I was getting more apprehensive the further we got from the hospital. When we got home, and Andy showed me into the room he had prepared for me & Emma , I burst into tears. 

The room was our son's small bedroom. There was a tall wooden storage unit piled high with medical equipment and catheters in different packaging than I was used to, there were different neck ties to the ones I was used to. It was too much. I was angry with Andy he had told me that everything I needed for Emma was ready at home. This didn't feel ready. This felt strange and alien, and chaotic compared to the order of the hospital.  I was scared, and I lashed out with my tongue. 

To make things worse, Emma didn't know where she was. She looked around her, not recognising anything or anyone apart from me & Andy, and she was miserable. She didn't know this was home. David sat as close to her as he could get. He sat on my feet when I sat down with Emma, he sat at the side of her cot whilst she slept during the day. He wasn't going to let her out of his sight again. At night time, he slept in the crook of his Dad's arm. During the day he seemed like a ghost of the chatty toddler I had left behind. He was silent. he didn't speak, any more. He smiled and he cuddled me, and kissed me, but he, like Emma had become silent. 

Emma & I slept in the single bed. With no oxipulse monitor at home we were reliant on an apnea monitor to alarm if she had problems breathing. I didn't sleep, I dozed for about 4hours, suctioning the trach tube every 10-15minutes. 

The following morning I sorted out the supplies, and organised things to make them more logical. I apologised to Andy, but felt hurt and isolated. I had stayed with Emma in the hospital and felt the responsibility of her care weighing heavily on my shoulders. 

I can't remember how we got through the next few weeks. I slept during the day at the weekend, I think I passed out through exhaustion. Andy returned to work. I think my Mom took Lizzy to school & back for me, we organised with a local Mum to do it for us at sometime, but I don't remember how soon that was. The best thing was meeting the Paediatric Community Nurses. They had all nursed children in hospitals and at home who had tracheotomies. I really felt they understood what I was dealing with. 

That will do for now, this is more difficult to write down than I originally imagined, hence the break between posts. I am on my long summer break now, so I will try to write more over the next few weeks. Thankyou to those of you who have encouraged me x

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