Through Isla’s various hospital admissions I’ve stayed on my fair share of hospital beds. In fact when I now tell one of my friends that Isla is back in hospital, I get a 3 questioned reply: 1. How’s Isla? 2. Do you need anything? 3. What’s your bed like? Hospital parent beds are part of … Continue reading Hospital Accommodation ‘Trip Advisor’ →

The tonic clonic seizure Isla suffered before her endoscopy was awful but it was now apparent that her seizures were the result of taking Mexiletine on an empty stomach. There had been signs previously that with all the milk changes we’d been through that different milks affected absorption. When Isla was on a fully hydrolysed … Continue reading The mysterious seizures: Part 3 →

The cardiac ward at Alder Hey agreed to take her in. Although seizures are not a cardiac issue, her heart condition makes Isla a very complex patient who a lot of hospitals or even wards aren’t equipped to cope with. The other reason that Isla was really a cardiac case in this instance is the … Continue reading The mysterious seizures: Part 2 →

I know I’m new at this whole parenting thing but I can’t imagine many things being harder than seeing your baby in so much pain that their tiny body can’t process it and it culminates in seizures. Knowing that the seizures are a result of pain, but not having any medical explanation, has been one … Continue reading The mysterious seizures: Part 1 →

In our time on ICU we met lots of new people in a very similar situation to ourselves. People we wouldn't have ordinarily met, from different walks of life. We often found ourselves asking the question, 'Why us? We did everything right! We don't deserve to be here!' Speaking to the other people on ICU, … Continue reading F.R.I.E.N.D.S – hospital circles →

I have to admit I get on my high horse about this more than I should. This is quite a controversial topic and I should state that I am feminist, in the way of believing men and women should be equal. I don't mean any offence in what I'm about to say... I don't think … Continue reading Making mum friends – why the exclusivity? →

One thing I found while living in hospital and I know I'm not alone, is feeling bitter because of the unfortunate, life-changing situation I'm now in. I unfollowed and unfriended countless people on Facebook due to them posting pictures of their stupid, healthy kids. It is pure bitterness. It's not their fault they have healthy … Continue reading Bloody Italy – Not a xenophobic rant! →

As I've mentioned previously, it's quite uncommon to have a baby on ICU unventilated. From a breathing point of view Isla was now fine, but all her electrolytes were rock bottom. The heart uses extra electrolytes while in an arrhythmia to try and correct itself. Dr Ackerman advised to keep Isla's potassium above 4.5 and … Continue reading Isla’s Treatment: Part 4 →

To be able to get Isla safe, her Iv Lidocaine needed turning down and replacing with an oral version of the same drug, Mexiletine. The guidance from Dr Knilans had led the Alder Hey team to this point but it was now in their hands. Mexiletine requires a blood serum level of 0.6-2.0 to be … Continue reading Isla’s Treatment: Part 3 →

We arrived the next day to find Isla had gone back a stage on her breathing support. She'd had a bad night. Then in the time of us being there for an hour, she had 5 reasonably long squiggly things. Flecainide clearly wasn't the answer. Over the 6 weeks or so of my Googling, I … Continue reading Isla’s Treatment: Part 2 →