Another night of watching her breathe, of watching her chest rise and fall and having to make that judgment call. What has caused E1’s nose to run and M’s throat to feel a bit scratchy has attacked E2 ferociously. She is wheezing and rasping… and I know those sounds so well.
She spent the day trying to be her lively self. But she kept crashing and coming over to me, heavy-limbed and whinging, and we’d feed or just sit and cuddle, until she’d regained herself again and would scramble down to join her sister. But it wouldn’t be long before she’d be back again, asking for milk, or to be held, or just crying because she felt miserable.
The holding and the feeding I didn’t mind — not even the crying, really — but the breathing was worrying me. When it turned raspy and I saw the first hint of that collapsing at the base of her neck, I pulled out the nebuliser and gave her a breathing treatment — remembering the doctor’s words that I was not to follow my instinct and hold off, but use it as soon and as long as she was wheezing. Her breath quietened for a while. And then began to grow noisy again as she played. I watched nervously… looked a the clock… thought about the drive to ER…
Dinner was coaxed into her, and then another breathing treatment, her face hidden behind the mist rising from the mask. I should have put her to bed — she was so ready, exhausted at the end of her long day — but I held her in my arms and kept her up for another hour, just to watch that her breathing was stable.
M came and sat with us. She seemed fine, but the rattle was on the edge of each breath. M looked at me, his mouth pressed tight with concern. Silent, but our fears the same. I checked the clock again.
I carried her upstairs and fed her again, and laid in the dark listening to her breathe, feeling healing milk flow out of me. Her nose was blocked and so she kept having to stop and come off to take air in through her mouth — a frustrating way to nurse. Eventually, I realised she’d fallen fast asleep, peaceful and safe in her mother’s arms, her mouth open and her breath warm on my skin. I stayed where I was for a little while, holding her, watching her. Still and resting at last, her chest rose and fell easier now, the wheezing barely noticeable. I stood up carefully and carried her to her bed, my apprehension calmed just enough. She hardly noticed when I laid her on her mattress and gently, gently pulled my arms away.
A few days ago, I was writing a letter a friend in the UK — a real letter, with a pen and paper, as my friend doesn’t really do the the internet that much. This friend is so dear to me and, yet, it’s so rare that I get the chance to sit and write that I hadn’t done it in nearly a year. So much to tell… I was trying to summerise E2’s condition, to explain everything without drowning her details… the allergies diagnosed, and then more of them, choice between child and cat, the tininess of her, the breathing troubles, the trips to ER, the way she succumbs to every little thing… Compared to so many dread diseases that she could have, what we face with her is nothing really. And yet, it’s constant, never-ending… It touches everything. It’s changed our lives.
I searched for a word, a way to describe her, to describe her condition… A nightmare? No, that wasn’t not right — cancer is a nightmare, not this. A misery? No! She’s such a joy! Even with all there is to contend with, misery wasn’t right either
And then I got it. I knew how to express it — all the frustration, all the worry and the fear, the tests, the disappointments, the way she ends up so close to the edge with every little thing… She is an exasperation. My daughter is a medical exasperation.
But tonight, she is upstairs in the dark, breathing peacefully. And that is everything.
Post-script: I stayed up a bit too late writing this, and then realised I had to stay up a bit later to finish loading the dishwasher and get it running. So it was very late by the time I finally laid down in bed… A few minutes later, E2 was crying for me, alarmingly weakly. As I lifted her out of her bed, I could see how she was struggling, the base of her neck collapsing in that grotesque way. I’ve just given her another treatment and she is breathing freely again (though coughing a lot and hoarse) and running around the room like a lunatic, completely hyped up from the stimulant in the drug. It will be awhile yet before I can see if this will hold, and feed her down again. It is 4am and I have had no sleep. ER may still be on the cards.