Due to the quick intervention down here and the super strength of our boy Jax is doing great.. what a difference 24 hours makes. He is continuing on the IV antibiotics and he has also had his 1st blood transfusion, so in true Jackson style, he is O neg. Which […]

Great Ormond Street Hospital Diary – Day 8


Today Jackson has deteriorated – he’s been so flat all day. He has only managed 1 hour with his eyes open watching telly. He is getting treat for a suspected line infection with IV antibiotics. Tomorrow GOSH will give him a blood transfusion unless he makes good progress tonight.

Great Ormond Street Hospital Diary – Day 6


Bad news I’m afraid Jackson is getting treated for sepsis!!! He has had a awful morning, he wasn’t responding very well until about 2.30 this afternoon when he finally opened his eyes. I can’t thank GOSH enough the staff are amazing. They started IV antibiotics yesterday as a precaution and […]

Great Ormond Street Hospital Diary – Day 7



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Today we got a day pass to visit the the sights in London ! As we know Jax doesn’t like crowds or people so we got a bus tour round London. It was lovely but too much for Jackson his retching has increased and his HR keeps going through the […]

Great Ormond Street Hospital Diary – Day 4


I’m sad to say that jax has gone downhill. He’s currently having a ECG as he keeps going brachicardic. He’s very flat retching lots and has been asleep most of the day. The only saving grace is that he is in the best place and they are seeing it all. […]

Great Ormond Street Hospital Diary – Day 5


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Today was a normal test day,  swabs bloods urine & stool samples etc. He’s been more retchy but we think that’s because of the fluid pumped in him yesterday. We managed to get out for a walk around London, as you can imagine Jackson hid in his chair watching Peppa […]

Great Ormond Street Hospital Diary – Day 3



The first tough day is done and dusted and Jax did amazing. Yesterday he showed off his respiratory tricks (breath holding & de sats), today he has shown his heart tricks (low HR & high HR). The nurses and the doctors have all been brilliant. He’s now out of it […]

Great Ormond Street Hospital Diary – Day 2



We are very proud of Jax’s  big sister Erin, her story that has been published by SWAN UK. Erin is Jackson’s rock and their bond is fantastic. SWAN UK is a support network run by the charity Genetic Alliance UK offering support and information to families of children with undiagnosed […]

Erin and her story published on Swan UK – a ...