Weaning from O2

OneLady

I was wondering what has your experience been having your LO weaned from O2 if he/she came home on it? One of my boys is on the lowest setting (0.1) and I'm curious to know the process of getting kids off. We have our first appt. with the pulmonary doc tomorrow--are there any questions I should ask? (besides the obvious--

mcdev

Keira has Chronic Lung Disease and was on O2 for her first year.  She was on 1/8 liter the entire time she was home.  Her pulmonary docs looked for the following criteria...

*consistent weight gain

*pulse ox reading 98 or higher when on O2

*pulse ox reading 95 or higher when off O2

*ablility to "correct" herself when her sats dipped lower than 92.

*We did a few trial runs without O2 all together (she was initially on 24 hours a day then weaned to just at night with monitoring) even when sleeping.

*final determining factor was a sleep study.  It was a pretty horrible experience, but proved she could do it (which I knew for months before!)

Keira is now 17 months old and we still have O2 and a pulse ox in the house although I haven't used it since June.  Her docs are fearful that with the predicted outbreaks of H1N1 she could be at risk without it nearby in the event she `needs it.    

CoCoBean

Ben was on the lowest setting for about 2 months after coming home (we lived at a very high altitude which had a lot to do with him needing it). Every week, the oxygen company would come out and test him with the oxygen and without it. Once he started to show that he had high numbers for the 10 minutes or so he was off of it, the doctor ordered a 24 hour test to be done. During the test, Ben was off of the oxygen and hooked up to the pulse-ox. The first time he did this, he was having a hard time keeping his levels high so after an hour or so, we put the oxygen back on him. A few weeks later, he did much better and came off the oxygen for good. It was a great feeling and so nice to not have the 50 foot long tube going through the house or having to take the portable tank whenever we left the house, which thankfully wasn't too often.

mommamorris

my little bird is a cld baby too... she's now about 5 weeks adjusted, 4 months chronological...

she came home about a month ago on .16 liter. she's now weaned to about .06... they told me not to wean her myself until after her final ROP exam. (they wanted her eyes to "mature".) that was last week.she had been sating consistantly (as consistant as those stupid monitors pick up anyway) at 100% the whole time she'd been home on .25. she's still sating at 100 on .06, i think we'll go down again soon. they said that it's not bad for her to be at a higher rate than she "needs". that her lungs will still grow and her requirement will lessen, even if she's on a higher amount. (which is why she was on 1/4 liter for a month and can all of a sudden be still sating 100 on 1/16)

that said, you can tell they just sort of left it up to me to wean her. i still have to have the ok of the pediatric pulmonologist before she comes off, but it's up to me pretty much to wean her. after 98 days in the nicu i'm ok with that... i thought it would be overwhelming but i've got it down pretty much. her oxygen company, apria healthcare, is really pretty hands off. (also pretty crappy truth be told.) her regulators go all the way down to 1/32 liter (.03 i think.. though my middle school math is really rusty.) so we've got a ways to go.

questions to ask (they may already be addressed):

reflux meds? i was suprised to learn from my daughter's pulmonologist the link between acid reflux and the need for oxygen. apparently the spit up can spill over into the airway, and if it's acidic, cause inflammation.

humidification? her o2 company didn't offer, and our nicu didn't request that her home tank be humidified. insurance should cover it, and it makes it much easier for the little babes. (the pulmonologist was aghast that she wasn't humidified. it finally got done today.)

diuretics? they told me my daughter will still be on them for a while. that basically they didn't want to change her dosage. but they still have to watch her electrolytes with blood tests since they cause her to "waste" extra.

monitor? our orders when we came home were 24/7 pulse ox monitor. ugh. when we saw the doc last week she said we could just spot check, leave it on when we felt like we needed to.. sleeping or whatnot... and when we wean her. what a blessing that has been!! but my daughter doesn't have desats anymore, so we've not felt uncomfortable with that. if you're comfortable with just looking at him and telling by his color it's great to not have all those false alarms!

(i guess some of those were obvious.

OneLady

mcdev:

Keira has Chronic Lung Disease and was on O2 for her first year.  She was on 1/8 liter the entire time she was home.  Her pulmonary docs looked for the following criteria...

*consistent weight gain

*pulse ox reading 98 or higher when on O2

*pulse ox reading 95 or higher when off O2

*ablility to "correct" herself when her sats dipped lower than 92.

*We did a few trial runs without O2 all together (she was initially on 24 hours a day then weaned to just at night with monitoring) even when sleeping.

*final determining factor was a sleep study.  It was a pretty horrible experience, but proved she could do it (which I knew for months before!)

Keira is now 17 months old and we still have O2 and a pulse ox in the house although I haven't used it since June.  Her docs are fearful that with the predicted outbreaks of H1N1 she could be at risk without it nearby in the event she `needs it.    

 

Thanks a lot for responding!

OneLady

CoCoBean:

Ben was on the lowest setting for about 2 months after coming home (we lived at a very high altitude which had a lot to do with him needing it). Every week, the oxygen company would come out and test him with the oxygen and without it. Once he started to show that he had high numbers for the 10 minutes or so he was off of it, the doctor ordered a 24 hour test to be done. During the test, Ben was off of the oxygen and hooked up to the pulse-ox. The first time he did this, he was having a hard time keeping his levels high so after an hour or so, we put the oxygen back on him. A few weeks later, he did much better and came off the oxygen for good. It was a great feeling and so nice to not have the 50 foot long tube going through the house or having to take the portable tank whenever we left the house, which thankfully wasn't too often.

Thanks a lot! The doc mentioned doing a sleep study, but we're not there yet.

OneLady

mommamorris:

my little bird is a cld baby too... she's now about 5 weeks adjusted, 4 months chronological...

she came home about a month ago on .16 liter. she's now weaned to about .06... they told me not to wean her myself until after her final ROP exam. (they wanted her eyes to "mature".) that was last week.she had been sating consistantly (as consistant as those stupid monitors pick up anyway) at 100% the whole time she'd been home on .25. she's still sating at 100 on .06, i think we'll go down again soon. they said that it's not bad for her to be at a higher rate than she "needs". that her lungs will still grow and her requirement will lessen, even if she's on a higher amount. (which is why she was on 1/4 liter for a month and can all of a sudden be still sating 100 on 1/16)

that said, you can tell they just sort of left it up to me to wean her. i still have to have the ok of the pediatric pulmonologist before she comes off, but it's up to me pretty much to wean her. after 98 days in the nicu i'm ok with that... i thought it would be overwhelming but i've got it down pretty much. her oxygen company, apria healthcare, is really pretty hands off. (also pretty crappy truth be told.) her regulators go all the way down to 1/32 liter (.03 i think.. though my middle school math is really rusty.) so we've got a ways to go.

questions to ask (they may already be addressed):

reflux meds? i was suprised to learn from my daughter's pulmonologist the link between acid reflux and the need for oxygen. apparently the spit up can spill over into the airway, and if it's acidic, cause inflammation.

humidification? her o2 company didn't offer, and our nicu didn't request that her home tank be humidified. insurance should cover it, and it makes it much easier for the little babes. (the pulmonologist was aghast that she wasn't humidified. it finally got done today.)

diuretics? they told me my daughter will still be on them for a while. that basically they didn't want to change her dosage. but they still have to watch her electrolytes with blood tests since they cause her to "waste" extra.

monitor? our orders when we came home were 24/7 pulse ox monitor. ugh. when we saw the doc last week she said we could just spot check, leave it on when we felt like we needed to.. sleeping or whatnot... and when we wean her. what a blessing that has been!! but my daughter doesn't have desats anymore, so we've not felt uncomfortable with that. if you're comfortable with just looking at him and telling by his color it's great to not have all those false alarms!

(i guess some of those were obvious.

Wow! Great questions--I wish I had read your post earlier today! LOL Thanks a lot!