An update from Josh’s Mum, Dawn

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An update from Josh’s Mum, Dawn

A bit of an update on how Josh is today …
Since defying the odds with his infection at Christmas, Josh has been much weaker & very sleepy, sometimes sleeping for days – but we’ve been loving our bonus time with him, every minute.
2 weeks ago Josh became worse & we came into hospital with an infection in his right lung, luckily we think we caught that in time & he’s responded well to treatment.
As this was clearing up, Joshs pain became chronic in his hips and legs – he has severe scoliosis which means his spine is pressing on his lungs & he dislocated hips through his post surgery disabilities.
The pain management team reviewed him yesterday (Thursday) & he now has a cocktail of magic medicines for us to help him be more comfortable.
Josh’s body is totally exhausted from everything he’s been through over the last few months & as a result combined with his chest problems & new meds, his CO level has risen sky high.
As CO rises it releases a slow poison to the body and makes the body sleep to try and recover – this is where we are upto.
Last night Joshs dad Colin, called me back in as his CO level was 15 and his breathing was very laboured.
Today Josh has been mainly asleep with an hour or so of consciousness
We’ve just done his blood gases again and his level is still very high
The body can only cope with these levels for a limited amount of time
We are slowly running out of options within Joshs treatment plan
I hope this makes sense, I’m just conscious that everyone’s kind enough to ask how Josh is, but that I don’t always reply – sometimes it too hard to explain and sometimes it’s just too hard.
As always thank you for all your love support & prayers for our superhero, we need another miracle for our boy now xx


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