If you follow me on social media at all, you’ll know that Littlest has been in hospital for a couple of weeks now. She went in with a respiratory infection that necessitated us flying back from our holiday/respite break and she’s having trouble throwing it off. She’s been in and out of the local ICU, swapping between there and the children’s ward HDU. There isn’t a dedicated PICU locally and we are waiting for a bed in the children’s hospital in Bristol. They are snowed however, because the Children’s Respiratory Illness Season ™ has come early this year.
She doesn’t currently need non-invasive ventilation and is on nasal oxygen of either the high-flow or low-flow kind; IV antibiotics; and having a lot of chest physio and suction. Her SATS keep swinging up and down and she is getting very tired. Last week we had a very difficult conversation with her doctors about the pros and cons of invasive ventilation. It needed to be had, but it was emotionally gruesome.
I’m updating every couple of days on tiktok, more for myself than anyone else really–it feels good to talk about it a bit, it releases some of the pressure inside me. She’s a strong-minded little girl–not so little now at fourteen–and we are hopeful she will throw this off. But also, we have been living with the knowledge that she is life-limited since we were first referred to the children’s hospice when she was four.
Every time she is poorly like this, her overall health and wellbeing steps down. Even if she throws it off, it’s probable she won’t ever regain the strength she had before. One of the reasons Bristol want her there is so they can assess her for overnight non-invasive ventilation when she is well enough to come home.
I am swinging between bursts of activity on social media and managing to write as displacement, to not being able to do anything. My own health still isn’t back to normal after my Gallbladder Summer and I’m having to pace myself. Consequently Mr AL is spending most of the time in hospital with Littlest–because of her communication issues and special needs she needs someone who knows here there pretty much all the time. I’m trying to do a few hours in the morning and early afternoon and he’s doing the late afternoon and evening; and when we don’t have help from one of her lovely carers, the night as well. No-one needs me overdoing it and having a seizure on the ward, although they’ve been very nice when I have.
Talking Child is bottling it all up, as are we all I suppose. Every so often they have a meltdown, completely understandably. We are taking it in turns.
That’s the news, anyway. If you’d like to contribute to a crowdfunder to help with additional carer costs and for hospital food when we don’t have enough spoons to take sandwiches and a thermos, I have set one up here. Alternatively if you’d like to support us by buying one of my books, you can find them here. Any help is very gratefully received <3.