Sleep study tonight

[EmSmith1980]

Anya has been off oxygen during the day for 6 weeks now, so one of the community nurses came out with a sats monitor yesterday, and tonight I've to do a sleep study on Anya. Omg I feel like a bag of nerves. I feel like I'll be awake worrying all night and up checking her every 2 minutes. I usually get up every 2 hours to check her nasal cannula anyway, but think I'm going to end up mega tired tomorrow (not the best when tomorrow is a school holiday and I'll have all 4 kids to occupy). xx

 

[clairec81]

Hope you dont mind me asking but i wondered why your LO was on home o2 and how its been going? Erin had rsv a few months ago and after an x-ray they felt her lungs were still measuring small so we're on o2, it was meant to be just at night but its 24hrs at the moment as she has had a few colds and they have said it will give her a boost. She is v small and has always had weight gain issues which they feel is related to lungs and i must say that she has been pretty healthy and gaining well since being on it. I gather the sleep study indicates she may be coming off the o2 soon? Is the study tonught with or without the o2 on - i've heard they can do it both ways? Anyway Good Luck and let us know how it goes

 

[katy1310]

Oh no, not the dreaded sleep study! I was a bag of nerves when Sophie had hers, and that was in neonatal! I'm sure Anya will do fine - thinking of you tonight!!

So....was it Diana, Jill or Sandra? (assuming they are all still there!)

xxx

 

[AP]

Good luck with the sleep study! (Diane done ours )

 

[Agiboma]

best of luck

 

[katy1310]

Good luck with the sleep study! (Diane done ours )

I keep thinking of what you used to call her when Sophie was in

She did our first 2 and then I think Jill did the 3rd one!

 

[EmSmith1980]

All went well. Anya never alarmed once. She was between 98-100% most of the night.

It's Gill we have coming out, lol. She should be here between 10-10.30am. Yeah her, Diana and Sandra are all still there.

Anya's on oxygen because of her chronic lung disease. She was ventilated for 5 and a half weeks then cpap till she was about 13 weeks old. She only came set at 0.1, so even though the consultant said her CLD was severe, she's done amazing. xx

 

[katy1310]

Aww well done Anya!! xx

 

[EmSmith1980]

Gill has just been out to get the monitor, and from my readings she thought it looked quite good, so she's just away to the neonatal unit to get the readings. She's going to call me later on. xx

 

[AP]

Oooooooooooooh!!!! Go anya!

 

[EmSmith1980]

Got to wait till tomorrow for the full detailed results. Gill wants to have a good, proper look. So oxygen is back on tonight. xx

 

[clairec81]

Sounds really positive! If you wouldn't mind i'd love to chat and see how the experience has been for you, not spoken to many people on home oxygen and its all still quite new for us.

 

[EmSmith1980]

Yeah sure, I'm on here most days. How long have you had oxygen at home? It's quite daunting isn't it? xx

 

[clairec81]

Thanks! Been home on it for nearly 2 months. It sounded worse than it actually has been, i think that the worst thing is that Erin is walking and regularly gets tied up in her long green wire! We get lots of 'ah that poor baby' looks which bothered me at first but when they see her roaming around and behaving like any other toddler it seems to stop. We think it will be only night o2 after a while so that'll be easier. Are you 24hrs or just night? It sounds like the wee one has done so well!

 

[EmSmith1980]

We have been home since 12th March after 136 days in neonatal. Anya started off on 24hour oxygen set at 0.1. About 6 weeks ago, she came off day time oxygen. It took a few days to get her to have 12hours off. I was worried sick. Popped her back o2 for feeds etc, but she does really well now. I hated the stares. After all she had been thru those looks of pity turned me into a crazy woman, these strangers had no idea why she was o2 or what she had been thru, we were just glad she was alive. Especially since most of the looks came from fully grown women. I don't think I would have minded so much if they had just asked, insead of staring and nudging each other.

Does your wee girl mind being on o2? Anya is always tring to pull it off. I get up every couple of hours to check on her, and almost every time, she's pulled the nasal cannula off and it's sitting on her forehead, lol. xx

 

[clairec81]

I know what you mean about th stares instead of asking - my DH is worse than me, i start to explain her condition when people skirt around the issue saying things like, how old is she? My husband completely refuses to give any details unless people ask - he makes them work v hard!
Erin is getting better att not pulling out o2, she does occasionally, mainly in the car when she know there's nothing i can do!
The thing that i cant get over is just how well she's been since being on it - maybe just coincidence but she does seem to be thriving - something she wasn't doing previously!
Whats the plan if Anya comes off altogether? - she has done so well!

 

[EmSmith1980]

Lol, your hubby sounds like me. I refuse to give strangers any info, my hubby will quite happily tell anyone all about Anya, but I think that is because he's so proud of her.

That's great that you can see a difference in Erin on the o2. Do you have nurses come out to check her sats? We never had a sats monitor to keep at the house, so really had to judge if Anya needed more just by looking at her.

I don't think there is a plan if Anya comes off it altogether. If the results come back that she's coped well, I think the nurses just say keep her off. But I felt she was really tired yesterday having been off oxygen the whole night. She was VERY grump and aggitated last night, I popped her back on o2 and she settled down and fell asleep. So I'm going to mention this to the community nurse today.

How much o2 is Erin on? have they given you any indication how long she'll be on it? xx

 

[dawnmc]

All went well. Anya never alarmed once. She was between 98-100% most of the night.

It's Gill we have coming out, lol. She should be here between 10-10.30am. Yeah her, Diana and Sandra are all still there.

Anya's on oxygen because of her chronic lung disease. She was ventilated for 5 and a half weeks then cpap till she was about 13 weeks old. She only came set at 0.1, so even though the consultant said her CLD was severe, she's done amazing. xx

oh I remember those 3!!! So glad to hear the sleep study went well I think Diane did Elsie's sleep study, but we were lucky enough to have it in the unit.... hope everythings continuing to go well!

 

[EmSmith1980]

Gill phoned earlier. Anya has to stay on oxygen and have another sleep study done in 3-4 weeks. I felt she was really tired last night having been off o2 for 36 hours, she was really aggitated, and settled down after about an hour of going back on oxygen. So I'm kind of glad she's keeping it at night, it gives her a wee rest, and a chance to grow and hopefully gain some weight. xx

 

[clairec81]

It sounds as though they are happy with Anya's results though! Erin is on 1.0 its way too mush for her needs (she required 0.02 when in hospital after rsv) but they have said the plan is to 'over oxygenate' her - i panicked when they first told us but her paed is great and she explained it was to kind of flush through Erin and open out all her tubes. They suspect she may have pulmonary hypertension which is high blood pressures in the lungs and one of the treatments is oxygen therapy so she explained their kind of jumping a few steps ahead. We got a monitor but its not much use as it runs at 100% constantly! The wire is probably what gets in her way the most and i feel that its a real pain when we are with other kids as she gets tangled or they trip! Her face is sore looking at the moment too - pads on and off all the time! We've been told her levels are fine during the day off o2 but a sleep study showed that off o2 she sat about 90 - 95% when sleeping so they think she will be on it more long term at night.