Home on oxygen and NG tube, any experiences?

[raquel1980]

After 6 weeks in NICU there's now talk of Hannah coming home soon but it would be with oxygen and the NG tube - she's currently having 0.03 and needs to continue with tube feeding for now due to her cleft palate, we have been trying her with bottles but they think some of the milk is going into her lungs so this has been stopped for now and the likelihood is that she'll stay tube fed for the next few months, until her breathing improves.

Does anyone have any experience of going home with one or both? I'm feeling a bit overwhelmed with it as I have Max at home now too but absolutely cantwait to have hannah home with us!

 

[bob2331]

Hi,

My little man came home on oxgyen, ask away.

I remember how scary it was when they first told us but honestly, its not as scary as you think, i promise.

Any questions, please ask xxx

 

[25weeker]

No experience but wanted to send you

I hope she comes home soon xx

 

[nineena]

No experience of oxygen but ellas had ng insitu for 2months now. Its not that bad atall actually just need to make sure hands r wrapped up at night then they dont pull tube out. The complex needs team wud support you at home and theyre really good. The hosp shud give u full.ng training and even how to pass an ng tube if u wanted to learn. Oh and we havent noticed anyone looking at ella. There was a lil girl in a toy shop that sed look mummy that babys got a sore nose and the mum said no she just needs medicine and that how she gets it which i thought was cute. Doesnt really affect us from doing anything and can actually make feeding when out easier.....less messy with no need for bibs. If u want to ask anything just pm.me hugs and hope ur lo is home soon xxx

 

[embojet]

Molly came home on 0.03 oxygen. It was just fine. Feel free to ask away x

 

[mumof2kids]

I got my baby on home o2 few days back. It's not really a problem very simple, just make sure where u walk as u have alot of tubing around the house. At the beginning it was very daunting but I got used to it straight away. No experience on NG. Just wanted to mention 0.03 is a very very tiny amount which is a very good thing.

 

[raquel1980]

Thanks guys, just a few questions...

How long did your LO stay on the oxygen? Did the hospital tell you to give your LO time off for any periods? Just wondering how we will wean her off.

Do they install the tubing in every room or are you restricted?

Does anyone come and check saturations/blood gasses at any point to see how she's coping? And was it obvious if your LO was struggling with their breathing and were you told what to do, did it work?

On the NG tube, did you learn to pass the tube? I'm reallynot sure that I'd be able to do that although might get shown.

 

[JoeandHarry]

My baby came home on oxygen but mainly only needed it for feeds, overnight, in the car and when outside. He also wore a sats monitor all the time so we could monitor his sats and just use the o2 when needed.

Noone told us when or who to wean, we just did it ourselves. We gradually noticed he needed it less and less and just stopped using it, but kept the sats monitor on to check how he was doing.

We didn't have tubing everywhere. We had one oxygen canister in the bedroom and one in the front room and just kept baby near the oxygen canister. For out of the house we had smaller portable ones to use.

 

[embojet]

Thanks guys, just a few questions...

How long did your LO stay on the oxygen? Did the hospital tell you to give your LO time off for any periods? Just wondering how we will wean her off.

Do they install the tubing in every room or are you restricted?

Does anyone come and check saturations/blood gasses at any point to see how she's coping? And was it obvious if your LO was struggling with their breathing and were you told what to do, did it work?

On the NG tube, did you learn to pass the tube? I'm reallynot sure that I'd be able to do that although might get shown.

Molly was on oxygen until she was 3 months old, but by that time it was mainly just overnight. The hospital will tell you how long she nees it for, and we had a community nurse visit us regularly to help guide us to wean her off, she was brilliant. The nurse did stats etc, and also left us a sats monitor, but we were under strict instructions to only use it once or twice a day to check her when not on oxygen. 0.03 is a very small amount, and the same amount Molly was on. She won't have trouble breathing if she's on 0.03. When they are on such a small amount it'smore to do with them using their energy for growing rather than working harder to breathe. They wouldn't send her home if they weren't confident she would be ok. With Molly, they gave us a choice whether to 'plumb' the oxygen in to the walls, or just have a really long tube coming off the concentrator (which was long enough to reach every room in the house). We chose this option as it was only goin gto be a short term thins as she as only on 0.03. A little tip, choose where you put the concentrator carefully as they are really nosiy! We put it in Molly's bedroom, (as she would be sleeping in our room for a few months). If it was downstairs it would have driven me crazy! Upstairs it was out of the way, and didn't bother us too much at night, as it was a constant noise we just kind of got used to it! Good luck with everything

 

[bob2331]

Hey,

Harry was on oxygen for 4 months, he came home on 0.1 and each week without fail, the community nurse came round to check his saturations and after a month, he has a sleep study (the monitors nearly ended up out the window) and we wrote down why it alarmed if he went below 95 (mainly straining and trying to poo bless him, his hernia's used to give him lots of problems. After his sleep study he was put down to 0.5 for 2 weeks, however, once this had gone through all the tubing, he wasnt really getting alot and he used to put on his canula's, we had another study and then he was taken off and we havent looked back. He was on it 24 hours a day.

We were not allowed to give him time off his oxygen, even though somethimes he wanted to) i never noticed him struggling once he got home, in hospital, i would notice it, but im not sure if that because of the surroundings.

xxx

The concentrator was noisy but we had it put in the corner of our dining room and we soon got used to it.