home oxygen

Lucy - posted on 10/24/2010 ( 10 moms have responded )

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my son is due to come home on oxygen next week am soo worried that i cant care for him like the nurses did, he will come home wiv an apnea machine so i no if he stops breathing but when will i no to turn it up or down? how do i get around when i dnt drive? i am a nervous wreck about the whole situation how did u cope??

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Julie - posted on 11/05/2010

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All the above moms had really great advice. The only think I could think to add is in regards to the medical responders for your area. I live in a fairly rural county and it was suggested to me to contact the local EMTs and let them know I'd be bringing home a premature infant on oxygen on such-and-such date. That way, they know if they get a call to your home, they know it is LIFE or DEATH and not something to dilly-dally on ...

It was great to talk to my local first responders(ambulance) and, luckily, we didn't need to call for any emergency medical services. I do, however, see him out an about the town and he's always impressed with how well my little man is doing these days:).

Oh, and I'm sure you'll get classes in infant CPR and what do do "just in case".

My son was a 26.5 weeker who came home on oxygen, a monitor and 11 medications (2 by nebulizer). If you have that many, maybe pharmacy will make you charts to help you keep track of it all. They also will make sure you are comfortable giving whatever medications your son will need.

Take everything one step at a time and don't be afraid to ask for clarification or help if you need it.

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Patty - posted on 11/20/2010

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my son was 28 1/2 weeks and 1 lb 14 oz. 14 weeks in the NICU he came home with a treach oxygen monitors it is a challenge but it does work out good it is hard to sleep much at first the doctor will tell you the numbers you need to know and it will tell you if he is getting to much or not enough they have portable oxygen tanks so you will be fine, we found my son who was on O2 for quit awhile we bought a bike trailer so he could get out and enjoy the weather he was older he could sit and walk we had him on one side and everything else on the other he is now 13 and doing quit well no O2 or treach he does have a feeding tube but we have learned to live with it you will do fine ask for help when you need it don't be afraid to ask best wishes and God Bless both of you

Cat - posted on 11/09/2010

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My DD also came home on oxygen. Yes, you will get an apnea monitor. It will have lots and lots of false alarms and you will spend weeks "just checking" when Baby stays a little too still a little too long. But you'll manage ;-) Make sure they give you a portable oxygen tank and a carrier for it.
If you don't drive, it's actually a bit easier than having Kiddo in the back where you can't see them while you drive. Try a Moby wrap - works great for Kangarooing as well as being pretty easy to get a baby into when they have tubes going on. If you have a stroller, you can get a tube that's long enough for the tank to be in the basket while you push Baby around.
You can do it, Mama! :)

Rachelle - posted on 11/06/2010

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my son(1now but born at 27weeks) came home on just an apnea monitor but needed an oxygen machine shortly after cos he has chronic lung disease...i was exactly da same as u...really worried about it like dat too...i dont think anyone else understands unless u've gone thru it...but i do promise u one thing it will be ok...da apnoea monitor is da best thing he cu actually have on him cos u can be assured against cot death...we discovered a method wen it sounded...it was to blow in his face gently wen it went off cos human reacion is to instantly take a breath in...he is one now and to dis day it has never failed us...the oxygen will be given in a machine for the home and a bottle for going out with a special bag to hold it dat u can attach to ur pram...i promise u after about 2weeks, u get so used to it that it will not phase u in da least...my email is rachelle301@live.ie if u wanna talk more...take care and best of luck...xxx

Joanne - posted on 11/04/2010

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Hi,
my son was born at 25 weeks and came home on his 100th day on oxygen and was on oxygen for a further 7 months. while it is not easy everything will be fine if you don't panic, after the first couple of weeks you will be as good at it (if not better) than the nurses who were looking after him. don't foget he's your son, you love him and you will know him and his needs best.
my son turns 2 in 2 weeks, looking at him now you would never know that he was a tiny tiny oxygen baby.
good luck!

Mia - posted on 11/04/2010

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Hi Lucy, I know how nerve racking it is. My son came home on oxygen also but with no apnea monitor, I was totally freaking out but the paed said he wouldn't be sending him home if he needed to have a grazby. Which didn't alay my fears at all! But we have a super oxygen and respiratory team that showed me what to to care for him and were there if I needed to call. I roomed in for two nights also so I got used to having him on the O2 by myself. I used public transport with the portable cylinder in the basket under the pram, I have a good size basket but the cylinder took most of it up and it's pretty heavy. Good luck with it all and email me if you've any questions, I'll send you a msg!

Sheila - posted on 10/30/2010

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Lucy, my little one came home on oxygen after 7 weeks (10 weeks prem). The Drs & nurses will only let your baby out if they believe he will be OK.
Admittedly, my little one did stop breathing and she went back to hospital due to a virus (all babies get virus). Now, she is 4 yrs old and a very sturdy girl!!
Our NICU had nurses to visit each day initially and always on the phone.
Take care and always remember the support is always there

Toni - posted on 10/29/2010

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hi my son was born at 23 weeks and he was on oxygen in hospital and came home on it aswell, it was hard to get around since i dont drive but i done it and 3 weeks after he was home i had him off oxygen and all his machines. you will have a stats moniter with your oxygen and when its high turn it down and you just have to keep trying i done an hour off his oxygen here and there. Its hard but he depends on you so you dont think about it when your doing it, it comes to you. if you need to know anything or just need to talk write to me xx

Chandra - posted on 10/24/2010

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My son was born 14 weeks early and came home on oxygen also. The nurses will tell you everything you need to know and I know with our NICU we could call at any time and ask any questions we had.

It is a handful to carry baby in the car seat, Apnea monitor, oxygen tank and diaper bag. One thing I will let you know is get a backpack thats big enough for the Apnea monitor, oxygen tank and diaper bag items. I was struggling so bad. I couldnt believe how many times I would get to a door and would have to open it up by myself when someone else was on the other side and would only step aside it was so frustrating. Having the backpack and car seat was so much easier. Im a single mom so I didnt have extra hands to help carry stuff so my mom and I sat down and brain stormed and this is what came of that.

I really hope this helps. You can message me if you need more info. Good luck itll be okay

Lisa - posted on 10/24/2010

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Hi, Lucy. I have had 2 preemies: one a 35 weeker who came home on an apnea monitor, and one a 24 weeker who came home with oxygen, an apnea monitor, a pulse ox, 6 meds, and reflux. It is challenging, but you will get through it. This phase won't last forever.

You may not have the medical training that the nurses have (neiither did I), but you have the love for and devotion to your son that no one else has. You'll also come to know him more intimately than anyone else--you'll notice little fluctuations in his breathing, you'll know if he seems uncomfortable, you'll discover all his little personality quirks.

You will also get instruction on how to work the apnea monitor--it's not difficult at all--and if there is a long pause in your son's breathing the alarm will sound and you can respond. I freaked out the first time this happened (and there may be false alarms too), but most likely all you'll need to do is call your son's name and give him a little rub. If he's awake and seems fine and the alarm goes off, then it's most likely a false alarm.

As for driving, is there someone who can help you take him to dr visits and so on?

Please feel free to ask any questions/talk about any concerns. I totally get what you're going through.

Lisa

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