3rd emergency trip in as many months:(

[fairydreams]

Hi hope it's ok to post in here, my dd was born at 36wks-normal pregnancy my waters broke and there was just no stopping her. She had to stay in whilst she learnt to regulate her temp, had other issues too, mainly asthma and acid reflux, she's 5 now and recently had a stay in hospital when her sats wouldn't go back up after her 2nd neb. One min the docs were talking of x-rays etc but when she eventually responded to the oxygen they decided not. bff thinks i'm not being assertive enough with them?

 

[fairydreams]

No advice then? not sure if it came across in the last post but what my bff meant was she don't think i've pushed them to investigate further but not sure who i'm meant to be talking to to get the wheels in motion iyswim? Surely it's not normal to keep having so many chest infections etc and to them just to treat them without finding out why? Fairydreams

 

[RedString]

sad to hear your daughter is doing so poorly. As to why they're not investigating, I have no idea. I'd demand answers if i were in your position. Demand that they find out why she keeps having these infections.

hope she's feeling better soon.

 

[AP]

(do u mean 5 years old? Or months? Weeks?)

I have to say with everything for our preemie we basically have to scream and shout for help. It's pathetic. We have suffered horrific reflux for two years and no-one gives a damn

 

[fairydreams]

Thanks for your replies Redstring & Sb22.. Sorry yes she's 5years now, always had one of those chests where if she gets a cold it turns into a full blown chest infection; the doc in A&E couldn't work out why her sats were dropping every time they took her oxygen off (she had had 3nebs by then!). Sorry you're lo suffers with reflux-mine still does. I'm going to make an app with the gp to discuss things and my mum's going to come with me. Will let you all know how i get on. Thanks again x

 

[RedString]

hope it goes well, and you get some answers!
Doctors can be such arses sometimes.

 

[clairec81]

Hi there, not sure if this is relevant but my daughter who is 19 months was put on o2 a few months ago. She was a 33 wk-er and did very well with regards to ventilation etc but has always struggled gaining weight. They discovered an undiagnosed pda which was v large at 1yr old and she had surgery. Since then she has had some bad cold (although never chesty) and when admitted her sats have been low. She is now going in for investigation to check the pressures in her heart and lungs. Her paed thinks it may be a simple as her lungs still being small (my waters broke at 24 wks so she had a real struggle to get her lungs ready for delivery). Anyway probably no help but i thought id post. Can i ask do you know what your daughters sats dropped to? Also they can do a sleep study as everyones o2 drops at night and they can measure if your LO's drops more than most.

 

[fairydreams]

thanks Redstring-tell me about it, Will only ever see 1 as he's the only 1 that listens. my mum's a human bulldog when it comes to GP's so i'll be fine! lol. Thanks Clairec, when the paramedic arrived. her sats were 88/89 & kept going to 90 everytime they took the O2 off in A&E, i'm not sure what they're meant to be but the docs did look concerned (love to be enlightened) dd slept rather well in the end tbh but think that was down to the amount of meds she had had pumped into her that night bless her

 

[fairydreams]

Hi there, just thought I'd update as she's had more chest infections since then, most recent one was 2 weeks ago where the asthma nurse put her on more ab's, her hv wanted her referring but the GP's still refusing to do so, said no need yet and put her on another different inhaler again. Apparently there's 5stages for a referral and she's only on stage 3, would like to know what stage 4 and 5 were?! will remember to keep you updated. Fairydreams x

 

[xxClaire_24xx]

Ellie is 13 month was born at 31 weeks and was in NICU for 10 weeks and she done great in there only needed help with her body temp and she had a nasty infection on day 3 that nearly killed her but she pulled through she came home at 4lbs 3oz but she is still so poorly and for diagnosis we have had to fight for them all so yeah def fight for what you think is wrong with her xx

 

[rory83coyotes]

I would definately say refer to a pulmonologist. What is stage 4 and 5? a ventilator? Those people are being silly. I say go with your bff and be more pushy. Who cares if they don't liek you. Your baby needs to breathe. Hope things get better.