She started the day on 'high flow', but by mid-afternoon she was back on the CPAP mask.
The mask is her best friend.
She gave it her best shot on the high flow, and that's all we can ask. Arabella was just working too hard. Her poor lungs can't sustain that amount of work.
She needs a certain amount of pressure to keep her lungs open constantly. It lightens her workload, and the CPAP mask does that.
Her lungs have a long way to go, but it's not a fair game from Belle's perspective. She has side-effects working against her, like moisture in her lungs, and it's all because of this sugar drug, Diazoxide.
You can tell that she looks puffy in today's pictures. A few weeks ago I mentioned that we'd see her swell again, and now it's quite obvious.
She's on so many drugs right now, and I despise them all. I feel bad for her and I worry.
I see how everything affects her.
They've started to wean her Diazoxide dose, at least. Arabella's sugars have been quite good this week, and hopefully they stay in a good range, otherwise we'll never get rid of this drug.
There are so many things going on with Arabella, and we still have a long road ahead of us. Instead of getting frustrated, we simply need to get comfortable.
We're in it for the long haul.
Today was another busy day filled with x-rays, glucometer pokes, blood samples, IV line switches, respiratory changes...and of course cuddles with mom and dad.
Bella loves her cuddles, and we love them too.
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