The next few days were very stressful, our nurse from the day of surgery who saved Florence’s life, was with us for 4 days. This really helped with continuity and formed a strong relationship.
They kept her quite heavily sedated the first 24 hrs then they slowly started lifting the sedation. They wanted Florence to move around, this helped move the fluid in her body. She puffed up like the marshmallow man which was completely normal, just very strange to witness.
Due to her arrest they had to reopen her chest, for the first 24 hours I couldn’t look at it. Whenever they looked I couldn’t watch, Tom had been brave enough to look, but it took me a day or so. We both said that it was part of Florence’s journey and we wanted to be able to tell her all about it when she grew up and had questions.
We were told in the next few days to not think of her recovery by day, but by hour. So her nurse would explain they were going to change something and expected results by the end of the hour. This really helped to manage our expectations and helped us understand we couldn’t plan anything. Florence needed time and we would just let her get on with it.
We both said to each other a couple of days after, if more than 2 people came into the room, it was to tell us that she had died. When 3 people came in we both held our breath…but she was ok!
Leicester Royal InfirmaryEast midlands Congenital Heart CentreHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterKeepthebeatBritish Heart Foundation