So we're home, but I feel really stressed out today. Basically, as soon as we arrived at the hospice on Friday Beatrice's breathing was too quick and she was working too hard. They started her on azithromycin straight away and she seemed much better on Saturday, so her 02 was put back down to 0.2l.
Sunday, I got called first thing by the carer to say Bea was very uncomfortable and breathing too hard and what would I suggest to make her more comfortable. Anyway, her o2 was put up to 0.8l and it was decided that she should stay another night as she was still unstable and the roads near our house were shut due to Silverstone, meaning the journey home would be extended and unpredictable. So dh took the older girls home and I stayed with Beatrice in her room. They had no spare carers so I looked after her and she had a really rough night.
This morning she was working too hard to breathe again so her o2 was increased to 0.8l again. I mentioned to the nurse who came to talk to me that I was a bit anxious about taking Beatrice home on 0.8l of o2 as the most we can give her is 1l at home. If she needs that much, we have no option but to take her into hospital, as we have been advised. Now this is where my day started to go wrong...
The nurse suggested that hospital is not the right place for Beatrice. She was very kind, but reminded me that Bea is not for IV antibiotics or PICU, so questioned why I would take her to hospital? She didn't understand why we don't have a nebulizer and an oxygen cannister at home so we can administer up to 4l of o2 if needed. I said I felt more comfortable on the ward with doctors around who are, after all, trained. Then the doctor came to see me, and again, just as kindly, asked me why I felt hospital is the best place for Beatrice when she is ill. She said we can have more o2 at home, antibiotics that we can administer and even oral morphine to keep her comfortable.
I left feeling quite shaken really. Like every time I have taken Beatrice into hospital with a chest infection, they've been criticising me behind my back and thinking that I should be doing more at home. I hate feeling like a burden and now I just feel fucking awful, like a big damn drain on the NHS who should've been taking care of Beatrice all this time at home. I feel so stupid and low I could cry.
Our CNN rang and said she's spoken to the hospice about getting us more o2 at home and I told her I don't know if I feel I can cope with any more at home on my own. This is a home, not a hospital and I am a mum, not a doctor. Then she asked if I had gone into work today and I said I hadn't as I didn't leave the hospice until lunchtime and she laughed (not unkindly) and said she didn't think I'd manage it. So I said, 'No you're right, I failed.' And that's how I feel tonight, like a big failure. I'm a shit teacher if I can't even manage 1 day at work and a shit mum if I can't manage to look after my child at home.
I feel even more wound up as I got talking to a mum at the hospice whose child has a muscle disease so is fed by a PEG and has apnoaeas (like Beatrice) and consequently gets respite 5 nights a week 10pm-9.30am and 8 hours spread over 2 afternoons. When I told her I get 7.5 hours a fortnight she thought I was joking. But when I told them at the review I was struggling at nightime, they said they would apply for a night of care but 'most parents prefer to cope on their own and don't like having a stranger in the house'. I feel like I'm failing at every step. I can't do what all the other parents of disabled children are doing.
Bad, bad day.