Claire Bennett Update

It was Toms birthday and I had tried to put things into place to make it a nice day…it wasn’t! I had organised to have Flo’s feet painted and printed for his card which was amazing. Florrie had some desaturating after taking her bottles which concerned the nurse, you may have had some reflux acid.
I took Tom out for birthday breakfast, when we came back we were told we were being stepped down to the ward, in 5 minutes. This wasn’t because Florence was ready but because there was a child who needed the intensive care bed and Florence was the least critical. We were both very angry, confused and anxious. The one thing we had always told nurses we were anxious about was the step down to the ward because again you go from 1–2-1 care to a ward. We still had our parent room so we decided to turn this into a positive. I was going to stay with Florence for the first night then we would switch each night. We had the nurses there if we needed help with anything and it was really good.

Florence spent 8 days on ward 1, on our second night we lost our parent room and ended up staying at a hotel close by, it was the best nights sleep we had in weeks, the nurses encouraged us to go home and rest but home felt too far. We went to bed and had a cup of tea and biscuits in bed, it felt naughty and we felt guilty…

One day whilst on the ward, me and Tom went for a walk and when we came back to meet Auntie Jessie and the building was surrounded by fire engines. There had been a chemical leak and we were not allowed in, we had to keep phoning to check whether or not you were being evacuated.

Leicester Royal InfirmaryKeepthebeatEast midlands Congenital Heart CentreHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterBritish Heart Foundation