A Constant Battle

Since my youngest was born (15 weeks ago) Ava has had 5 hospital admissions, 3 of which resulted in more then 1 nights stay at either our local or specialist hospital.

We don’t know an awful lot about her autonomic system – but we do know it’s perhaps not working as it should and he therefore spikes temperatures and has a soaring heart rate or a drastic dip – always fun all through the night with her machines bleeping!

It’s been horrible to watch her deteriorate and not know why, she’s had fevers of 41, vomiting and generally not my happy girl. She’s had a persistent ear infection since she had a grommet placed in her left ear, I wish they hadn’t bothered to be honest, she has no functioning nerves and they should just remove all remaining inner ear structures to prevent infection. She has been miserable to say the least. Endless antibiotics later and it’s still oozing nasty stuff and she’s still throwing up. Her little body started to give up the other day – she always has an underlying infection in her peg tube (currently awaiting it to be resited) so it boils over bursts and is nasty.

I discharged her myself this morning and have brought her home, there is no benefit to her being at hospital. I have the same equipment at home and she’s surrounded by her family and things she knows and enjoys. I just hope she picks up soon.

Every parent worries when their children are poorly, but I cannot explain the worry and fear of a simple Cold, it could literally kill my precious girl.

 That fear eats me up every day.
  Ava after being admitted to hospital. Poor baby Steven does not look thrilled at spending his days with his big sister in hospital!

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