Rose is having a 24 Hour Esophageal pH Test (or Impedance test) at the moment, involves a nasal tube inserted to the end of her esophagus and her nurse or I record when she does things like vomit, gag, stop breathing (hasn’t happened since her last “event”), sleep, wake, eat, finish eating. This will show how acute her reflux is and if it’s life threatening.. I don’t think it is but we’ll see. If it is then the case for a fundo will be more compelling. The results will be collected on Monday and a doctor should compile a report by mid to late next week.
I’m a bit worried [I could start every post like that!] that 2x 6mm tubes down her throat won’t leave her much room to vomit, breathe etc. given her first LBO (when her throat was very swollen from intubation, op etc) showed her narrowest point was 4mm… but I guess time will tell. [hmmm.. I just said this to Rose’s ENT surgeon and she pointed out that the LBO was on Rose’s trachea and the impedance study is on her oesophagus so little to worry about there… makes me realise how inaccurate a lot of my assumptions and therefore this blog is but hey.. emotional mum rather than reporter here].
I have little emotional energy or presence of mind left for many more procedures of this kind. I am so sick of her being hurt for her own good and this one was my fault.. tho’ the lesser evil hopefully… if they find a fundoplication is not required I guess I can feel less guilty about it!
She’s off her high-flow therapy while they complete the pH test.
Breastfeeding is still very slow… my guesstimate is that she gets between 10-20mls in a breastfeed so we top her up with about 50mls each feed… hard to imagine we’ll ever get there but I think it’s safe to say we are both pretty determined to. Main issue is she doesn’t have the strength / stamina. Her energy is used breathing and trying not to vomit I imagine. If only she could get strong enough overnight… I’m being impatient I know!