Day 53

4/2/17 – Day 53

Firstly we owe a huge huge thank you to so many people, we’ve just been utterly overwhelmed by the amazing support and help and love and just everything over the last 24 hours or so. Jodie & Laura & everyone at The Butchers Bar, thank you both from the bottom of our hearts, what you’ve done for our family is just incredible, it’s lifted a huge strain and we’re so so grateful. I’m having to be quick, too quick to say a proper thank you (if we ever can!) but I want to update quickly too. Seriously though, we’re completely overwhelmed, thank you all so so much.

Sorry for leaving everyone hanging a bit. Not a huge amount of change to update BUT he is stable at the moment. He had a little (terrifying) blip yesterday at around 4pm but the Drs & Nurses are fairly sure it was because his Rocuronium (paralysing drug) had been stopped and his morphine lowered so he ‘woke up with a bang’ which apparently isn’t unusual. They think he probably realised there was a tube in his throat/coughed and blocked the vent tube with secretions. Scared the living daylights out of us at the time but he’s remained stable since which is good.

They’re still not entirely sure what’s going on. He has areas of his gut that look like nec but it isn’t presenting quite as they’d expect so the surgeons don’t want to go in right now. They’re reviewing him regularly and if he deteriorates at all they’ll take him to theatre but for now they’re happy to keep a very close eye and see what happens.

He’s also had a brain scan and that shows no new areas of bleeding since his previous grade 2 IVH so that’s really good news.

He’s very swollen from all the fluids he’s had over they last 48 hours so he’s back on Furosemide (diuretic) to help with that. He’s on 3 types of antibiotics still. His adrenaline and dopamine have been stopped now and his blood pressure has held which is really good because that was one of the things the Drs at Telford were really battling with, it just kept dropping. He’s still quite yellow at the moment. His vent settings have been turned down a bit but he’s not really breathing above it at the moment or trying to take breaths for himself. That’s possibly because of the morphine too though, he’s been like that before when on morphine and intubated I think. Heart rate has come down nicely. It was at around 210 at one point which was really frightening but it’s about 130-140 now.

Obviously he’s still very poorly and remains in the paediatric intensive care unit at BCH but in the words of my wonderful sister who, along with others, has been so so amazing these last couple of days (and weeks!) Yesterday the world felt like it was ending. Today there is hope.



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