COming home on oxygen

[kazbino]

Hi. I am new to this thread but wanted some advise. My beautiful baby boy is finaly home from hospital still on his oxygen and just wondered if anyone else has been through this?
Kai was born 10th November 2010 and weighed 1lb 11ounce - 11 weeks early! Unfortunately after 1 night in hospital i had started with pre eclampsia and after a general scan at 11am they rushed me in for an emergency c section. At 1410 that day Kai had arrived. He had to be ventilated for a couple of days then went onto CPAP. His sats were always hovering late 80s and ended up spending nearly 6 weeks in intensive care. They also said his valve to his heart hadn't closed. Eventualy we moved to the next room, still in his incubator and gradually to the 3rd room. He was off and on his CPAP quite a few times. Even in the 3rd room he was still on up to 38% oxygen. One night Kai crashed with an infection and ended up back in the intensive care room, back on CPAP (very close to being ventilated again!) He had a lumber puncter that day. Poor thing had been through so much already! I forgot to mention he had already had two blood transfusions!!
Finally our little fighter got back to the 3rd room and was put in a cot!! YIPPEE!! They put him on low flow and varied from 0.05 - 0.08. Eventually Kai was in the final room!!! After 92 day we could finally bring him home still on his oxygen. He is now on 0.04. I was just wondering if anyone else had a baby home on oxygen and how long it took to ween off? Kai is so precious and we still can't belive our luck that he is home. He now weighs 6lb 2ounce!!! and is 14 weeks old.
Karen x x

 

[AP]

hi there

although we did not take alex home on oxygen, another mum did. she was on it for about 2-3 months when they started to wean to just nighttime. I think just under a month later it was gone!

im so in awe of u lot on oxygen, i dunno how i woud have coped, but u just have to i guess!

enjoy your time at home! xxxxxxx

 

[AP]

hi there

although we did not take alex home on oxygen, another mum did. she was on it for about 2-3 months when they started to wean to just nighttime. I think just under a month later it was gone!

im so in awe of u lot on oxygen, i dunno how i woud have coped, but u just have to i guess!

enjoy your time at home! xxxxxxx

 

[sherryberry79]

Hi

My daughter was born on Aug 3rd at 26+3 weighing 620g. She was ventilated in total for over two months although she did manage a week on C-pap before she had to be re-ventilated. Like Kai she had a PDA and it wasn't until she had ligation surgery that we finally said goodbye to the vent for good! Because she was ventilated for such a long time and there was no time prior to delivery to give me the steroid jabs, she has chronic lung disease, hence the oxygen.

Amelia is on more oxygen than Kai, she was discharged on 0.2 but contracted bronchiolitis just before Xmas and ended up back in hospital. When she was discharged she was on 0.4 which seemed at the time like a real set-back. She is currently back to 0.2 so we're back to where we started two months ago, but she seems to be saturating well, and I am hoping she will get tweaked down soon.....maybe even tomorrow...the community nurses are coming to see her so it's possible!

When we first found out that she would be discharged on 02 I was TOTALLY terrified, could not talk about it without crying and was obsessed with how long she would be on it for. Any medical person I came accross would be bombarded with lots of questions about when we could expect to see her 02 free, and when they would not commit to any time scale I would pester them to tell me on average "yes, but other babies that have been discharged on 0.2......were they still on it at 1 year old"?????!!!!!

I don't think anyone can tell you how long Kai will need the oxygen for, but 0.04 is a really tiny amount. I was warned that some babies can get a little bit attatched to a tiny amount, it may only be a snifter of oxygen, but they just don't wanna let it go! Others just lead the way with their weaning and can't wait to get rid of their 02!

I have come to accept now that Amelia will be on oxygen for as long as she needs it, no more, no less. Don't get me wrong, I can't wait to be rid of all the tubes, and it breaks my heart to see her trying to scratch the duaderm and tape off her skin because it's irritating her. The skin on her cheeks is really quite red and sore, but until she can go a few hours each day without any supplemental 02 I don't think it's gonna improve! Has Kai started pulling at the tape yet? We have to swaddle Millie when we put her down at night otherwise she would have her nasal cannulas out......it's not easy is it?!

But it sounds like you're doing just great and little Kai sounds like a brave littla man, I am sure Kai will be free of the tubes very soon, and all this will feel like a distant memory! Keep us updated on here, I will be thinking of 'lil Kai!

Sherry & Millie xxx



PS - I hope ur NNU advised you about DLA - whilst he is on oxygen he should be entitled to this, and a blue badge too as you will need to carry ur oxygen cannisters around in the car.......just in case no-one mentioned this, but they probably did!!

 

[Marleysgirl]

When I read the OP my mind immediately thought of Sherry & Millie, so I'm glad you've posted Sherry!

 

[Laura2919]

I dont have experience of this but I was watching a programme on discovery home and health and the women's boy came home with it and he was born at 20something weeks and was on it for seven months.

 

[kazbino]

Thank you so much for your replies, especially Sherry and Millie. It's so hard and like you say also heart breaking. We've just bathed Kai and changed his duoderm & cannister but it's such a pain with all the wires etc, it should be an enjoyable experience but I find it quite stressfull!! He has just discovered his tubes and sneakily puts his tiny fingers underneath to tug them out!! Trouble is he hates his arms being tucked in so would throw a tantrum if we swaddled him at night!! How long was Millie in hospital for? I really hope they have reduced her O2. Has she got over her bronchiolitis? They did say Kai was more prone to infections etc so we're are trying to be strict with visitors etc. It's so hard though as everyone has been so patient in meeting him and like any new mum we can't wait to show him off!!
He is definately holding on to the tiny amount of oxygen he's on, the nurses said he was just clinging on to it! I was like you and always asked how long he'd be on it but I think they're fed up of me now so I'm trying not to ask anymore. We've just got the forms for the DLA and blue badge but thank you for that.
Look forward to following everyones progress.

Karen & Kai x x x

 

[kazbino]

Only me again!!!! Can I just check, Kai is really bad with colic, especially in the middle of the night!! Typicall!! Any suggestions? He's already on gaviscon & Colief which doesn't seem to be doing much. We've already tried infacol and i put books under his moses basket. Nothing seems to help!!! I'm willing to try anything!!!
Thanks Karen & Kai x x x

 

[Josephs_Daddy]

Only me again!!!! i put books under his moses basket. Nothing seems to help!!! I'm willing to try anything!!!
Thanks Karen & Kai x x x

What you put them there for, he can't read them like that!!!

No, seriously. We are having the same problem but check its colic and not some sort of refulx??

 

[Dona]

My friends little boy came home on 02. He was on it for 5 months, 3 of them were only at night. He was on 0.2 though then 0.1 then none!

She got the blue badge too plus £70 a week. I would look into that one xx

 

[bumpsmum]

no experience of this myself hun but wanted to welcome you and Kai to the boards! Him tugging at his tubes is a sign as soon as he is ready to wean off it he will let you know just ask Marleysgirl about Andrew (sorry if im thinking of the wrong baby here there are a few of them now ) xx

 

[lizziedripping]

Hi there. Evie, born at 24wks gestation came home on 0.1 - and began to be weaned after 1 month. She was out of hospital early November, weaned fully by March. It really varies hugely from child to child - Evie had CLD, but no other complications.

Colds never bothered her chest - despite the fact that I freaked out when she had her first cold in February. Sometimes colds can set these babies back, and oxygen continues for a bit longer. The most any of the other babies were on oxygen for in my experience was up to a year after discharge.

As for colic - I have never found a cure, and until both my kids got onto solids, they had the "screaming ab dabs" in the evenings Can just be normal for any baby hun. Exhausting tho

Lots of love x

P.S. - It is unfair to have a new baby and all these complications, when it should be just a wonderful experience. Stay strong darlin', things do get easier, and the pain of prematurity eases. xxx

 

[embojet]

Molly was born at 29 weeks, and came home at 36 weeks on 0.03 o2. She wasgradually weanwed off and was using it just at night for a while and was off it by 3 months. Best of luck with it x

 

[kazbino]

Thanks everyone! Well, after just 10 days of being home, they reduced his oxygen on Friday to 0.03. The outreach nurse has been again today to monitor him and his sats were great for Kai, he was even up at 100% for 10 minutes which is unheard of from Kai!! She said hopefully we can reduce it again next week!! YIPPEEE!! He now weighs 6lb 9 ounce!! We must be feeding him well!!! Let's hope Kai is as good as Molly and is off it a quickly as she was!!
Lizziedripping.... I'm dreading Kai's 1st cold too!! I just know what it can do to them! We should have gone to my friends daughters 1st b'day party today but I cancelled just in case there were snotty/sniffly children there!!!
Poor little might now is struggling with his pooing! (Sorry for details!) and is filling his nappy with rabbit droppings! Again, any tips would be good!
Thanks
Karen & Kai x x x x

 

[bumpsmum]

fantastic weiht for Kai hun, you must be so pleased and sounds like he will wean quickly of the oxygen

Are you BF or FF? XX

 

[sleeping bubs]

wow congratulations Kai sounds like a little fighter hope he is off his O2 soon

 

[kazbino]

Just thought I'd keep you posted...... Yiippeee!!! The outreach nurse has been again today and they've reduced Kai again to 0.02!!!!! She said this is where is gets tricky to reduce them to 0.01 and air. As someone said previously these little ones hold on to the tiniest amount of oxygen! I'm so proud of my little man!!!

Karen & Kai
xxx

 

[bumpsmum]

thats fantastic news hun. I hear 0.02 is a tricky stage and some babies cling onto it but one day soon out the blue Kai will soon no longer need it x