hi everyone, sadly I don’t have much news to give you there is no change in Jax condition we seems to be stuck in a cycle and not really getting anywhere. on a plus note the fabulous Barrie James’ Art Page has been designing our Jackson character for his supprt […]
Monthly Archives: March 2017
WARNING DISTRESSING Jackson continues to have these episodes (they can last up to 2 hours!) followed by a wipe out sleep he is barely conscienous after and wakes up to pain. No-one has a clue what they are or why they are happening we have had another EEG today but […]
WARNING Distressing Video – but can you help ?
Surgery was a success. This little man is amazing. Xx he had a new central port a new Jej and his mid line is removed
Jax’s surgery was a success !
so I’m very pleased to say that jacksons episodes are not seizures, they are just like them. Neuro have said that what they think is happen is he is having pain (we don’t know where from) which brings on the screaming episodes which then causes Jackson to breath hold and […]
Not seizures
March 18th 10:12 Morning everyone they have started me back on tazocin (the super strong iv antibiotic) yesterday and it’s working im standing up and Interacting. Mammy is very pleased xx and it means my next trip to theatre on Monday will go ahead as planned xx 13:23 Jackson had […]
Highs and Lows
I’ve not posted every day as I feel all I’m bringing to the page is doom & gloom. But I’ve had a few inboxes so here’s what is happening.. Jax has sadly started having seizures. We thought we had got away with them because his eeg come back normal. If […]
Updates
So….. Jackson continues to spike a temperature and generally been ‘unwell’ last night he had on call doctors out taking more bloods for culture to see if he has a fungal infection. He has been on IV antibiotics for 6 days now for treatment of his ‘septic episode’ so docs […]
Jax is still generally unwell
Jackson still has a infection but we don’t know where it is coming from he has spiked a temperature again. Blood cultures have been done for a possible fungal infection. Because of this his plan for challenging his fluid intake has been but back until he is well. He is […]
Jax still has an infection
Our super brave little man is out of theatre it was all a success. He has a mid line fitted into his bicep until he gets his central port fitted in a few weeks time. Thank you for all your kind words
Out of Theatre
17:35 – Jackson developed a none blanching rash. Over the day it has spread. We suspect it’s a line infection so it needs to come out we won’t know for sure until tests come back. The good news is gastro & Jax amazing and Neuro are back in charge so […]