It’s been a funny old week.. So Jax has been took off his PN feed completely. And his feed changed to one with more calories this seems to working well. YEAH !

But he isn’t tolerating the volume of feed he needs to meet his daily requirement (anyone else getting de-ja-vu?). Plans keep getting put in place to increase by 1ml per hour but as soon as he is at 42ml ph problems start. This is the 3rd time we have tried this cycle but to no avail.
So on call docs come out. Put him back to 41ml ph and make the rest via his central line with IVT. Gastro come back and try and increase it again blah blah.
As well as that last week we noticed granulation around his line site. This has got worse. It was swabbed and come back as a bacteria called pseudomonis. Then last night when the nurses were doing his dressing, the cuff on the line (that should be inside) was popping in and out (and bleeding) luckily Neuro were in and they got surgeons down quick the result…. His line has gone once this dressing is removed the whole thing will come out. He had been x rayed and for now it’s in the right place so we can use it for IVT.
So what happens next ? Well in a ideal world Jax will take the amount of fluid level he need via his jej and we will all live happily ever after.. otherwise the line gets replaced. Or they cannulate him to get extra fluids in! 😱😱😱😱. What a nightmare! But as always his spirits are high he’s happy. Xx xx