When I first arrived home I started to get milk coming out of my nose, this would make me panic and every time I would try to inhale, I'd just get more milk blocking my wind pipes. I really don't like this and I cry and scream lots and lots, my face turns really puffy and goes a darker red/purple colour. Usually, with varying methods, my parents can get me to settle down after about 10 minutes, but when this first happened they took me straight to hospital. The doctors checked me over, said I seemed fine, said it shouldn't happen, then sent me home. Two weeks later, my parents and me, to some extend, have gotten used to this daily ritual. My Dad puts me in the choking position and gives me a few hard back slaps to push things along. These do hurt, but they do help and it only really happens once a day. Over the last few days however, it's started to get worse. Probably every two hours from midnight I would block up and scream. My Dad would give me the old back slaps, Mum would lie me in the recovery position and they'd both try and fish out some of the gunk in my mouth. At 4:00am on Sunday I started again, making it the third time in a night, so my parents got me dressed and sent me back to hospital. Not surprisingly, by the time we arrived on Sunday morning, I was pretty much better. The doctors gave me a quick check over and sent me on my way again.
It happened twice again on Monday night. Milk out of the nose, scream and tears. It could be because I am taking nine different types of medication, some of which are very thick or sticky. Perhaps it's because I am on Oxygen and my airways are always dry because of it? Perhaps I drink too much? Or perhaps there isn't really a reason and that's just life?
Either way it's not fair.
Felix
x
It happened twice again on Monday night. Milk out of the nose, scream and tears. It could be because I am taking nine different types of medication, some of which are very thick or sticky. Perhaps it's because I am on Oxygen and my airways are always dry because of it? Perhaps I drink too much? Or perhaps there isn't really a reason and that's just life?
Either way it's not fair.
Felix
x
I'm not happy. Has a doctor watched Felix feed? Does it only happen at certain times? Have you got a neonatal outreach worker who can observe and advise? Has he a diagnosis of reflux?
ReplyDeleteMy gut feeling is its acid reflux, he's getting a burning sensation and then reacting by expelling the milk, but i am just a mummy not a doctor.
We had a few issues with Joseph and looking back I should have pushed it further as I am now quite sure it was silent reflux I kept saying there was something wrong with his belly, but didn't know anything about reflux at the time.
Keep asking for answers, it doesn't sound right to me
Cheers Kylie, he was on Gaviscon for a while whilst he was in hospital to try and relieve some of his stretching and straining, which we hoped would improve his O2 levels. It was eventually stopped because we didn't any difference and he hated the stuff, which made him choke! He is now on Infacol, which seems better for him.
ReplyDeleteHe does appear to be feeding well, when he has bad nights he feeds much more which probabbly doesnt help. As for the nurses? We ask them everyday when they come to visit - they just say "oh dear" and no one really has any suggestions.
A bit frustrating to say the least. It never happened when he was in hosptial (to our knowledge) and only really happens at night. Mum is careful to sit upright when feeding and tries hard to burp him after each feed.
After his episodes he's very tired and sleeps, when he wakes up he looks fine.
I don't think we have a Neonatal outreach worker, just nurses at home and all they do is take his SATs.
Thanks Kylie :) We might try Gavison again to see if anything changes. Or perhaps try bottle feeding him EBM at night?
Sounds a lot like reflux. But whatever it is... scary! Poor Felix. Hope you all can get to the bottom of is ASAP.
ReplyDeleteJust to give an update, spoke to a consultant today and we're trying a two week dose of Ranitidine. We've also got the Saturation monitor for a 12 hour review. He's sitting around 92% at the moment, not good enough Mr Felix!
ReplyDeleteJack was on Rantidine for about 3 months. Also Zantac and Prevacid. Those last two work together quite well. I'm glad they are monitoring him and getting to the bottom of it!
ReplyDeleteForgot to say that we just recently stopped the Zantac prescription. They say it oftentimes takes up to two years to grow out of reflux.
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