Saturday and Sunday were great. It was so nice to be home, to have a glass of wine in front of the TV (my latest business idea: wine bars in hospitals). Proper food tasted amazing! On Monday morning we were back to the hospital for more blood tests. The results were fair, a couple of dosages of drugs were increased but that’s to be expected as her diagnosis is ironed out.

We went home for a chilled family day, but after letting Elfie sleep for a while I noticed she felt a bit hot. I checked her temperature – 39 degrees.

Needless to say we rushed back to hospital and were seen straight away in A&E.

7 hours, 2 blood and 1 urine tests later we were sent home with a diagnosis of a water infection. A dose of antibiotic was given in hospital – it had been vomited up by the time we got home – and we were up til 4am making sure she kept down all 6 of her medicines. She seemed a bit brighter the next day, although very tired, and my parents came for dinner.

She started getting hot again at around 5pm, and spiked a temperature of 39.5 at 9pm. Off to A&E again!

Because of her condition she is unable to produce the chemical we need to respond to physical stress, so when she is poorly or has an infection it’s really important that she is treated for the infection as well as increasing her standard dosage of medication to up her bodies reaction to it. If she’s sick, or has diarrhoea, then it’s especially important that her meds are delivered intravenously.

We were allocated a bed straight away and sent up to the ward by midnight. More bloods were taken, and we went to bed for 2am. Our specialist came to wake us up at 2.30 for more bloods and to put in a cannula (her veins are so bruised that it didn’t work), and at 4.30 I decided to leave Will in hospital with Elfie so I could go home and get some sleep.

Her tests revealed that the infection had just started to spread to her blood so we were very lucky to catch it.

I came back at 11am the next day to swap shifts – Will went home to sleep and do some work – and whilst he was gone they finally managed to get a cannula in to make sure her meds were delivered effectively. I have been here with my trusty fold-out bed ever since.

So once again, we have spent the week in hospital! We seem to be beating the infection and she is so much brighter today. Her feeds are up and she has put on a pound in the last 9 days. She’s creeping closer and closer to being back within the centiles on the weight chart and is looking so much more like a baby with a bit of added chub.

The cannula’s out now and we haven’t had the awful feeding tube this time around. I’m hoping we’ll get sent home in time for the X Factor but that all depends on her infection and blood tests. We’re all thoroughly sick of the hospital and really want our little girl to be well and back home with us.