anna's blog

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

Bronchial lavage and scope

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Anna was due to go to theatre under general anaesthetic on Wednesday. She had a bad cough and a temperature, both good reasons not to go sooner. However, she is not improving and her temperature remains worryingly high so the need to try and find the cause of this infection is urgent. She is also finding breathing hard work and requiring additional oxygen on a regular basis.

So yesterday (Monday) she went first for anther CT scan, and then late in the afternoon, went to theatre. Whilst there, the surgical staff took a bone marrow biopsy, changed her gripper (has to be changed after a week), did an ultrasound and small biopsy of the lump in her neck.

They then did a bronchial lavage and scope. This means using a fiber optic bronchoscope to look into her lungs, and check for any irregularities. Saline is then flushed throughout the lungs and washed out and that liquid tested for a range of infections.

The after effects can be a high temperature (!), coughing, sore throat and difficulty breathing. Anna was in recovery for nearly an hour afterwards as she struggled to breathe easily and maintain enough oxygen in her blood. The medical team were concerned about her temperature not settling below 39 degrees but I did explain that in terms of her current condition that was considered to be in Anna’s lower range. Once back down on ward 2, she was seen by the registrar and the on call physiotherapist was called out for some chest physiotherapy. She was finding it very difficult to breathe easily.

Despite all that, she had a reasonably good night. Obviously both she and I are woken frequently through the night for her obs/antibiotics/infusions/…but she did go back off to sleep again.

The biggest improvement has been in her temperature. The last temperature over 40 degrees was 24 hours ago, and the last one over 39 degrees was 12 hours ago.

She has had 3 physiotherapy sessions today, working intensively on her chest to remove secretions (she is not enjoying that!), a session with the occupational therapist, visits from several doctors and consultants and a review of her input in a nutritional research project.

She is absolutely exhausted. However, she looks a lot better and is clear and articulate especially when telling the physiotherapists to either stop or go away.

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The bone marrow biopsy shows no return of the leukaemia (thankfully), and is consistent with infection. Her blood counts are showing small signs of recovery (neutrophils have come up slightly from 0 to 0.06 – normal level should be 2.5 to 7.5).

The fluid from the lump on her neck showed no pus, just blood. Seems to be what the medical staff wanted.

The bronchial investigations suggest a possible fungal infection so her drug regime has been added to, although she was already on anti fungals.

Everyone who has seen Anna today has commented that she looks much better. She is now sleeping.

It looks like she might be improving. I’m hopeful that tomorrow will be a better day.

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41.2 degrees

Anna is still in hospital and will be for at least another week, unless there is a dramatic improvement. Peter and I alternate staying nights and weekend days, and I cover most of the week days. It is a constant challenge to look after Anna in hospital and Nathan at home, managed with a huge amount of help from lots of you…

Anna’s temperature continues to be extremely high, as you can see below in her temperature and heart rate charts for the past few days. The temperature is the top chart in the pictures and heart rate is the bottom one. Normal body temperature is around 37 degrees (you can see a black line for this on the chart) and anything above 38 degrees is fever or pyrexial. The black dot in the vertical axis of the temperature chart is 38.5 degrees.

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You can see the dips on the chart when she is given paracetamol. Her temperature dips for several hours until it wears off, then goes straight back up again. A lot of her temperatures are recorded at 40.4 because that is the highest that the tempa dot strips go up to. It is probably higher than that. Her last temperature was 40.4 on the strips but 41.2 on the tempanic (ear) thermometer.

Her blood counts are very, very low. Haemoglobin is still around 70 so she has had another blood transfusion. Her platelets and neutrophils are almost zero, and white blood counts around 20.

The medical team are still working to find the cause of the infection but have also considered that the fever and accompanying shakes could be a side effect of one of her (many) drugs. The anti fungal drug she was taking, ambisome, can cause fever and shakes so that has been replaced by another antifungal. She is on several intravenous antibiotics, some specifically for respiratory infections and some more broad spectrum. She is also on drugs to maintain her potassium levels, which had been low, multi vitamin/minerals, and a range of others on demand to address either pain (codeine) or any side effects from the others (eg ondansetron for anti sickness).

She is still quite unwell but not causing the same kind of concern as last weekend. However, it is clearly not good for anyone to have such a high temperature for such a long time, especially a 4yr old girl.

As well as continuing to search for the source of infection, the medical team are now also trying to identify the anticipated progress of the infection. If there is no change, she will have another general anaesthetic on Wednesday and a bone marrow biopsy. The biopsy should show if her blood levels are due to improve or not. Of course, they will add in any other procedures while she is under a GA such as taking a sample of the fluid from the still unidentified lump in her neck and fitting her splints.

The splints are to avoid contracture in her feet. Because she is using her feet and legs so little, there is a very real danger that her ankle muscles will shorten and become resistant to any stretching. So she may regain strength sometime in the future but her feet wouldnt work. She has had splints cast, which she did not enjoy, and it would be easier just to put them on her while asleep.

Anna didn’t want any photos taken for the blog today (she really is feeling rubbish) so I’ve put some in from before her leukaemia diagnosis.

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