anna's blog

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

And whooping cough too…

Anna has whooping cough. The combination of that with the pneumonia means she is feeling really unwell and needing a lot of respiratory support.

I’ve learnt a lot about whooping cough, or pertussis, in the last 24 hours. Although the vaccine is given to all children as part of their early year immunisation programme, the effect of the vaccine wears off over time and so children and adults can still get it. So despite a full vaccination programme there are still a significant number of cases of whooping cough in the community, but generally not diagnosed as it can present in a similar way to a normal cough. Anna has been diagnosed because she has been tested in hospital but children aren’t routinely tested if they see their gp. The ‘whoop’ is often heard in babies but not necessarily in children or adults so what seems like a long lingering cough could actually be whooping cough.

It’s a notifiable disease so once public health are made aware of a case letters will go out from school.

Anna is well enough to be sitting up in bed or wheelchair during the day but the constant coughing and nausea means she just feels rubbish. And not surprisingly, bored and grumpy.

Her oral antibiotic, clarithromycin, makes her feel sick but her anti-emetic medication, ondanstron, makes her feel sick when she takes it as a liquid so one of the nurses sourced it in a tablet form. She remains on IV antibiotics as well.

Her oxygen levels are still low, especially overnight, so she is having additional oxygen. Her lungs continue to be full of infection and she is having physio input once or twice a day. I’ve taken in our cough assist machine to use in hospital and today for the first time they used suction through her nose to try and remove some of the mucus. Poor Anna.

The only plus side is that whooping cough means she has to be in isolation so she is in a room rather than out on the ward so she now has a tv. It’s a small comfort in the scale of things.

I think Anna’s hospital stay might be longer than we thought.

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24 hours later…

Anna has steadily improved and is much better, although still unwell.

Her oxygen saturation levels, which were the main cause of concern last night, improved steadily through the night. She had to have a face mask on constantly when I finally went to bed. The oxygen flow was initially 15 litres, by morning it had reduced to 6 litres and then to 0.5 litres. Her temperature was down to a more acceptable level, as was her heart rate.

There was still a concern that there might be fluid on her lungs which would require a drain (and general anaesthetic) so she was nil by mouth all morning. She had an ultrasound around 11am and the radiographer confirmed there was no fluid. Just lots and lots of infection.

By mid morning she was declared fit to leave HDU and go into a normal ward.

Tonight she is settled and ready to go to sleep. She is still on 2 different antibiotics, anti emetics and pain relief. She has watched 2 dvds, several hours of Netflix and had her nails painted by one of the nurses.

I think she will remain in hospital until early next week but she is clearly improving and getting better.

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Pneumonia. Again.

It’s 1.30am and I’ve left Anna in the care of the staff in the high dependancy unit at sick kids to try and get a few hours sleep up in PJ’s loft (parent’s accommodation).

Our arrival at A&E this evening was sudden and unexpected. Anna has had a bad cough for over 3 weeks and there have been ups and downs but she seemed over the worst and was in really good spirits when she left for school this morning. Over the 3 weeks, she has been on antibiotics, used her cough assist on a regular basis and tried hard to clear the phlegm that has built up in her lungs. However it just hasn’t been enough. She felt unwell at school this afternoon and developed a temperature of 39 degrees soon after arriving home. She was extremely nauseous (due to all the mucus and phlegm going into her stomach) and not wanting to eat or drink. She wanted to go to bed straightaway and didn’t ask for her electronic device. Both actions are completely out of character and enough to cause concern. I called the GP, who arrived out at the house 20 mins later and within the hour we were on our way to sick kids. We were seen fairly quickly and sent for a lung X-ray. Things speeded up after that (supporting my new theory that the worse things are the quicker the nhs response).

Doctor’s descriptions of Anna tonight have included ‘a very sick child’, ‘very poorly’, ‘really very unwell’. We’ve spent most of the evening in the A&E emergency room, with constant doctor/consultant presence, as Anna has needed significant oxygen and various monitorings since arriving early this evening.

Tonight’s X-ray shows the left hand side of her lungs almost completely infected with pneumonia. The out of hours physiotherapist has been called in to try and help clear the build up in her lungs and the out of hours radiographer was called in to do a lung ultrasound. She has got a cannula in her hand and had bloods taken and tested.

She has received 2 different IV antibiotics, an anti emetic and is currently receiving fluids. She is taped up with both heart and oxygen monitors which are both giving readings causing some concern – low oxygen saturation levels, high heart rate and high respiratory rate. She has been nil by mouth since arriving as it looked like the fluid build up on the lungs might require a drain, and presumably a general anaesthetic. However, the ultrasound results show little fluid but a lot of infection

Everybody as always has been wonderful with her but sometimes explaining to the parent what is going on during a ‘significant event’ is the last thing to happen. It was clear from the fact that we were in the main emergency room that it was serious but I’ve had to ask for information, specifically ‘is this treatable?’ and later, ‘is she improving ‘. Without these questions I don’t know how worried I need to be (the answer was yes to both). She has certainly caused a lot of concern tonight but all the signs seem to show that she will recover.

Anna’s own comment is ‘this has been a really bad day’. I agree completely. X

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