Start of December on the home monitoring we noticed Florence’s oxygen saturations had dropped. Her acceptable limits are 75-85%, we noticed 73%,71% then 70%. We spoke to our specialist nurse who told us to come in. We were staying at least a night so Tom left us to go and get clothes for me. Whilst he had gone Florence went down hill very fast. She started crying and didn’t stop for nearly an hour if not more. Her oxygen saturation dropped to 50% and she went blue, they struggled to get her back into her normal range and had to use high pressure oxygen, oxygen mask and a bag. We were sent back up to CPICU for the night for her to stabilise. They did an echocardiogram and noticed her right (only) ventricle function was impaired and her tricuspid valve was regurgitating and leaking. They put her on High pressure oxygen (Vapotherm) and she had an NG tube passed again.
She basically was struggling to survive, any calories she took in, she was expending trying to stay alive and she couldn’t put on weight. Weight is a direct correlation to Cardiac function. They said her numbers for heart failure were higher than they wanted them to be too. It chucked me and Tom right back to worry and anxiety.
We were told by the cardiologists and doctors, if we hadn’t been in hospital when she dropped her saturations like this, she probably would not be here today.
Leicester Royal InfirmaryEast midlands Congenital Heart CentreHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterKeepthebeatBritish Heart Foundation