Anna’s temperature is still consistently high. Since Saturday nights’ crisis, it hasn’t really settled at all. It keeps heading back up over 39, frequently hitting 39.9 and has just measured off the scale at 40.4. Paracetamol is given 4 hourly which reduces it but as soon as the 4 hrs is up, it shoots back up again.
When her temperature is high she vomits, coughs excessively and struggles to get comfortable. She is on ng feeds, 4 different antibiotics, and another blood transfusion is required as her haemoglobin has dropped from 90 to 70 to 50 in the last few days.
Hospital/NHS policy is not to do blood transfusions overnight. Mainly, I think, due to staffing levels. It is also not usual procedure to give bloods when the patient has a temperature in case of adverse reactions. However, the SHO is currently phoning our senior consultant at home to discuss this. I’m nowhere near as worried as I was on Saturday night -all her other obs are good, including blood pressure, heart rate, oxygen levels etc. it’s just this temperature which is such a problem. I suggested tepid sponging (thanks, mum) but the nurse suggested a one off dose of brufen instead.
Over the past week, Anna has had a CT scan, an MRI, lumbar puncture, 2 chest X-rays, one stomach ultrasound, visits from E,N&T consultant, neurology consultant and regular night visits from the overnight registrars. She has had a blood transfusion, platelet transfusion and is on ng feeds. She is having 4 different broad spectrum antibiotics to try and address any infection. Blood samples have been taken frequently and sent for virus and bacterial analysis.
Although she is still clearly ill, she is managing some smiles, which is wonderful. Clown stevie is one of her favourites.
He isn’t allowed in the room because of infection so he has to perform his clown antics and magic tricks through the window. She still loves it!!!
She is lying quiet and still just now, too hot to really sleep and occasionally calling out for either me to hold her hand or a drink (or both).
Hoping for a better day tomorrow. Good night from us. X
anna's blog 
What a time, hope and pray for a better night and day for Anna tomorrow too, thinking of you x
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Thanks for the update. Hope Anna improves aoon and you both get some sleep.
Hi, thank you so much for the update. Yourself, Anna and Nathan are ‘constantly’ in my thoughts….. Love hugs and strength day and night xxxx
We are so relieved Saturday’s worries are not part of the picture. We are thinking of you and we really hope Anna can ‘throw’ this one off soon. Much love, Helen Paul Andrew & Ruthie
Sending you all lots of hugs and love, you, Anna and nathan are in my thoughts Hxx