2nd of June – means we have now been at GOSH for 4 months

Lots has happened since our last update, it is fair to say that the rollercoaster continues.
Rosie had circuit change number 16 on Monday 23rd May. She tolerated it really well. Her CRP (Infection Marker) came down to 20 and we had a few great days with Rosie being on great form, making lots of sounds and giving us lots of smiles.
Rosie had a CT scan, which all looked good so Aspirin was started last Monday, with a view to working back up to converting Rosie on to a Berlin heart.
Rosie hasn’t been great over the last couple of days and we started questioning whether there was another infection brewing. Cultures (samples) were sent but no positive result has returned so far.
The plan was to convert Rosie back on to a Berlin heart yesterday. However, Rosie’s CRP came back at 174 and it was obvious that there was an infection so this plan was scrapped and antibiotics started. In addition lots of tests were carried out yesterday to try to find the cause of the infection, including an echo, blood samples taken and ultrasound scans of her tummy, hips and legs.
This morning Rosie has had a circuit change (number 17 now), which she tolerated well. She is intubated again and is currently having another CT scan as a precaution.

Thanks for your continued support x x x

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