Home oxygen

[jandksmommy]

For those of you whos LO came home on oxygen, how long did you need it? Reese came home on oxygen (just a tiny bubble, almost can't even feel the flow coming through the canula) but after 3 months, her lung specialists assessment shows we still need the extra air. Just wondering what others have experienced.

 

[DonnaBallona]

Hi!

my baby boy jude came home on oxygen. He has chronic lung disease.

Jude was on .05 of oxygen for 3 months, then got bronchitis twice (something he suffers terribly with-he has it at least once every 6 weeks) and then Unfortunately his lung collapsed. The consultant put his oxygen requirement up to 1.0 for a month and then reduced it again to .03.

we had a sleep study done at 5 months old when we found he could cope without it and they took it away. I was really pleased and mega proud

HOWEVER- now they've taken it away I feel abandoned by all his carers.... he had 3 days in HDU last week because he had a lung infection and I feel like he could do with some extra help breathing- but nobody seems interested in helping us. I worry constantly about him now; his breathing isn't right and is now having bradys during sleep because his breathing rate is so erratic.

I wanted the oxygen gone and now; I wish I'd asked to keep it a little longer!

how has your LO been doing on it? xx

 

[Sam182]

Alexander was on 0.03l until the day before he turned six months x

 

[jandksmommy]

Thank you ladies!

Reese is doing ok... surprisingy well for for being a 23 weeker. She has chronic lung disease too. She is almost 8 months old now and we have been given the 'ok' to reduce her oxygen from .05 to .03 but I have to admit that I am nervous. The specialist talked to us about watching for signs of distress but would not lend us an oximeter as we live almost 3 hours away and wouldn't be able to return it quickly if another patient needed one more than Reese. I have twin toddlers as well so can't be watching her all the time.

So far, she seems to be handling it alright. I am quick to turn it up at the first signs of indrawing though

Donna, I am so glad you mentioned that you would have liked to have kept it (just in case he needed it). The specialist strongly recommended that even if Reese comes of the oxygen soon, she would like us to keep paying for the equipment throughout Reese's first winter as a simple cold will likely cause her to need the extra support. Reading how you felt sort of validates my desire to keep it for as long as we can even after Reese comes off of it.

Were you provided with any sort of monitering equipment when your baby came home?

 

[Dinah93]

Our DD came home at 15 weeks actual, 3 adjusted, and was on 0.1L until she was 27 weeks actual 15 adjusted. From 27/15 for the next 6 weeks we gradually increased the amount of time off oxygen until she was off completely. She was never weaned down past 0.1L, they just started doing 5 mins off oxygen, then 15, then 30, then an hour, until one day she was at 6 hours at a time and they said to stop completely. We kept the tanks at home for another 6 months, but luckily she never needed to go back on it. Our DD had a rougher time with the o2 than most 28 weekers as the vent pressure caused repeated pneumothorax, so they had to operate to remove half her left lung as it was so badly damaged, which is why they didn't wean like they normally do.