It's been a while but here I am again, and what a fortnight we've had. On the 29th Jan I noticed that Anna's wet nappies were smelling a little bit more distinctive than usual. The following day I noticed a visible discharge. I decided to give it a day or two, thinking it would just clear up on its own. On the Saturday morning, Anna woke at 2am for a feed which is fairly unusual for her. At 4am she vomited this entire feed up. The whole of Saturday she was running a temperature and was very lethargic, not the smiley little Anna we're used to. In a space of 29 hours we had only managed to get her to take 5oz of milk. By 5am Sunday morning her temperature had hit 39.7, paracetamol was not controlling her fever and she was inconsolable, so we called 111 who sent a fast response car out to us. On doing her observations, the paramedic found her pulse rate was over 250. He called an ambulance who took us straight to Birmingham children's hospital. When we arrived, she had to have an in-out catheter to obtain a urine sample, which showed she had a pretty severe urine infection. One of the nurses later explained that her urine was full of live bugs and pus, she had sepsis and they were keeping an eye on her as it would not have been unusual for someone in her condition to develop toxic shock syndrome. She was put on a saline drip though a canula, formula running constantly at a slow rate through a nasogastric tube and was hooked up to a heart rate monitor for 2 days to keep a close eye on her stats. She had numerous blood tests and urine samples taken. The first set of antibiotics used were not treating the infection sufficiently, so a stronger, higher dose of antibiotics were prescribed. She was also on paracetamol and ibuprofen to control her temperature and pain levels.
All of this took a huge toll on Anna's feeding. Many of you will know already that Anna has been struggling to gain weight as a result of her condition, and has recently been put on a high calorie prescription formula to try and bulk her out a little. Her low weight made it even harder for her to fight the infection off on her own. What we were not aware of is that many children in a similar position to Anna have no concept of pain until it becomes unbearable. When we are feeling a little sick, we know where the pain is, we know how to indicate that we are in pain and we know how to treat it. It appears Anna had had this infection for a while, but hadn't registered the pain making it impossible for us to know that there was anything wrong. This horrified me, god knows how long the infection had been festering away inside her for. This illness has now, for the mean time at least, took the majority of Anna's feeding ability away from her. Together with the paediatrician, dietician, nurses and speech and language therapists, we have put a plan in place to ensure she is getting the nutrition she needs. Sam and I have both been trained in NG feeding, and will now be topping up the majority of her oral feeds with milk through the tube, as well as an additional 400ml overnight feed. We knew it would eventually come to this, it was just a matter of when.
After 11 days and 10 nights, I am glad to say we are now home. I couldn't write this blog without mentioning the wonderful people, patients, their families and staff, we met during our stay at BCH. The staff work tirelessly and put 100% into everything they do. We were put on to the renal ward for the last 5 days of our stay, and were taken under the wing of the renal families right away. Those children are seriously the most inspiring kids I've ever met, and I wish every single one of them all of the luck and love in the world, here is to hoping they get their match soon.
So, now our baby is a tubie! Below is a picture of her rocking her new tube! And she picked the right week to do it, as it's national tube feeding awareness week this week. I'm happy to say she's full of smiles again and off the antibiotics, with normal urine once more! We're meeting our community nurse on Thursday and things will go from there I guess. I am now off to have a long soak in the tub and an early night before we're back to the normal drill tomorrow. Hope everyone's been well and thank you all for your well wishes whilst Anna's been in hospital - having the support of our family and friends is the only thing we need at times like this and luckily for us you're all great 😊 x
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