anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Cause for concern

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Anna’s condition has caused a lot of concern over the past 24 hours.

She was admitted last week with rsv, a relatively common but unpleasant cough and cold virus which can have serious symptoms even in otherwise healthy children. Anna’s symptoms are at the severe end of the scale since being admitted last Saturday.

However, her condition deteriorated yesterday afternoon and overnight.

Yesterday, she had a liquid feed going in to her nose through the ng tube in her nose as she was eating almost nothing. It was making her sick so she was having anti sickness medicine as well.

She had blood and electrolate fluids going intravenously through her port-a-cath as her haemoglobin counts dropped down to 71 (they transfuse below 80) and her fluid intake was extremely low.

She had a monitor strapped to her toe to measure her oxygen levels and, because the oxygen is low, she had small tubes up her nose giving her additional oxygen.

It’s not usual to see her with so many tubes and wires.

As the afternoon went on, it became impossible to settle her. She started behaving in a unusual manner, repeating things over and over again, getting her words confused and unable to sleep.

By early evening, it was clear that Anna was very disoriented and confused so the registrar was called. Once he arrived and examined Anna, the consultant on call was contacted at home and asked to come in. By the time she arrived late evening, Anna’s condition had worsened. The radiographer on call was brought in from home for Anna to have a CT scan and her chest was x rayed. Various discussions took place between oncology, neurology and other consultants and it was agreed that the CT scan showed nothing critical (such as a bleed on the brain) and that she would have an MRI on Monday, and possibly a lumbar puncture.

The consultant discussed moving Anna up to the high dependency unit but instead, around midnight, she was moved into a cubicle next to the nurses station here on ward 2, and put on half hourly observations.

The nurses showed me how to use the emergency button in the cubicle. They’ve never done that before.

The evening shift registrars came down to assess Anna around 1am and around then she really started to worry us all. She kept asking for me over and over again although I was right in front of her. She didn’t seem to be seeing anything, although her eyes are working.

The medical staff don’t really know what the problem is and are trying to eliminate possible causes. She is on 3 different intravenous antibiotics to try and cover as many infections as possible. She has an oxygen mask next to her face to maintain oxygen levels. The nursing staff, registrars, consultant on call and HDU were all on alert, waiting to see what happened through the night. There was a ‘low threshold’ for moving her to HDU.

She finally fell asleep at around 2.00am, with me on the chair next to her. I was scared to sleep in case her condition worsened but eventually dozed on her bed. Both she and I were woken at every set of obs (blood pressure, temperature and eye response checked). And at various points in the night she has slept on my lap. Emotionally and physically, I’m exhausted. She will probably go for an MRI and lumbar puncture today, rather than waiting for Monday.

This morning, she is currently fast asleep, her temperature is back down and she behaved ‘appropriately’ (medical term!) when she woke and asked for a drink. She is more comfortable and although there is still clearly a cause for concern, I’m not seeing the same urgency in the medical staff response. Thank goodness. Investigations will continue and I’ll update you once we know more.

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