This post originally appeared in my old blog, www.the-alice.co.uk
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.
Oh Alice , I've only just caught up with your last few blog posts! I am so sorry to hear about poor Elfie not being very well. My heart is breaking for you , I cannot even begin to imagine what it must be like to have to see her being poked and prodded like that. I am so glad though to hear that she is feeling better today and that things seem to be looking up. I hope she is home and feeling 100% better very soon! Much love xx
Thank you Emma – I’ve just caught up on your news too and I’m so sorry to hear about Jon’s car crash! Thank goodness he’s ok, what a terrifying experience. Seems like we’ve both been through the mill a little bit lately!!! xx
Thank you,it was but he’s and that’s the main thing! How is Elfie now? I’m so gutted I couldnt make the Huggies meet-up! But dragging a Toddler on a long train ride is my idea of a nightmare!! xx
She is doing very well and we are so thankful she’s healthy.
You were missed at the Huggies meet up! Hopefully I’ll be able to see you at next year’s Cybermummy if not before xx
You poor things, really thinking of you. Hope to finally meet you some time soon with the Huggies mums. Take care, and love and hugs to Elfie xx
I have also only just caught up after seeing your email to Jen. So sorry you've been going through this and really hope you get to bring Elfie home very soon. Take care and hope to see you on Tuesday, but completely understandable that you might not make it. T xxx
Thanks Tasha – it was really lovely to meet you last week xx
Alice, I just caught up on everything you and your family are going through via stalking your blog…and all I can say is I'm sending a mental, big hug to you all. I'm crap at leaving meaningful comments, but my heart goes out to all of you. xxxx
Thanks Cate, I got this comment on my phone when we were in hospital and it was really lovely to receive xx
Hey, is that a crease I see on her leg? Good sign! Thank goodness she got this infection post diagnosis. Hang in there x
She has little rolls of fat now, almost good enough to nibble on! x
Again? Oh crap, I am so so so sorry to read this! Lots of love and all the best for the three of you. May Elfie get much better very very soon! Deborah xxx
Thanks Deborah, she is doing so much better and I am so relived that she's a lot happier xx
Well done you for being so strong over a scary and stressful couple of weeks. Elfie sounds such a brave fighter, she must get that from her mum! Really pleased that she seems on the mend and hope that things settle down for you soon. x
Thanks Tanya, she is just getting better and better so fingers crossed we're out of the worst. Lovely to meet you and LLC last week! x
Oh, Elfie, you brave little thing. You must all three be exhausted and fed up but here's hoping it's the last trip to the hospital you'll face. Feel better soon, Elfie! xx
We have just spent a whole week away from the hospital, long may it continue!
I've been reading your blog for a few weeks and just wanted to say good luck and I hope everything is okay for you all.
Thank you :)