Comment 1

No improvement 

  • Things are declining ……
  • Ava is now not breathing well as both lung are not coping
  • Temp rising
  • Her body weak and sore
  • Pain still but because she is sick she seems to be less whingy

I let it all out again to the teams about not being happy with her care and how it’s not addressing her issues and it’s beyond cruel.

I said I want changes today as enough is enough

My beautiful child doesn’t deserve to suffer. She wouldn’t hurt a fly. A normally healthy happy yes quadriplegic child without a tear on sight … crippled by pain and now illness creeping

I told them her lying down waiting for surgery week after week would create further issues like pneumonia

Am I ever heard ?

Does anyone even care ?

Or is this another to hard basket ?

I won’t stop battling and I will not say ok to something so cruel as to watch and see

I’m so thrilled with all the support from people reading and wanting to know how she is going. Thank you all.

It’s the hardest time ever watching a child helplessly wanting and needing treatment and not getting the correct stuff

Nurses have been so good it’s the doctors who can’t change things or come up with more ideas. I just pray this new thing with the breathing doesn’t bounce her to picu :; She is on the CPAP full time now

X-ray results in – bottom right lung partial collapse

This entry was posted in: Uncategorized


I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

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