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emma wasn't on o2 at home but I can tell you her nasal canula was only changed about once a weel of that. Mostly if the prongs looked nasty then it got changed, or if it got kinked and it looked like there might be a leak...
 

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My 36 weeker child was one and a half months old when we were on oxygen at home (very bad case of rsv) and I was told to change the cannula once a week unless there was gunk or a kink. We still use oxygen at times and I follow the same rules.
 

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I changed it if the prongs were gunky or it got really beaten up. Definitely no more than once a week. I had to re-secure it more often than that, though.

Do you need those neonatal cannulas/duoderm or is she using the pediatric ones? I may also have extra pulse-ox probes, if you happen to be using a
Massimo monitor.

Also I am curious if they have given you any guidelines as far as weaning her down. My NICU didn't, and our ped (who is also a neo, albeit not practicing as one these days) deferred to the pulmo, who I didn't get to see until a month after she came home.
 

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Discussion Starter · #6 ·
Elaina - our computer that will upload pictures is in a part of the house that's really hard to get to with the oxygen and every time she's let me put her down and then actually fallen enough asleep that I've been comfortable leaving her alone, I've had more important things to do like laundry
I really need to upload those pictures though!

Betsy - they didn't give us any guidelines at all. She was supposed to come home on 0.2 flow (although she was only on 0.05 in the NICU) but the regulator they gave us was in fractions (Respira is trying to hunt down one in decimals for our gas O2 tanks...long story) and they told us to put her on 1/4. She's been on 1/8 the past few days though because every time I put her at 1/4 she continuously high-sats. Right now she's sitting at a O2 saturation of 98 while on 1/8 and she's asleep and she usually doesn't breathe deeply when she's asleep so I think I could probably wean her again but I'm going to hold off on doing so until we talk to the pulmonologist.

I haven't made the pulmonologist appointment yet. I need to go look at our discharge papers and find out when they want me to go see him and then call and make the appointment but unfortunately I can't reach the papers from where I am currently tethered by her O2
 

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Quote:

Originally Posted by ksera05 View Post
Betsy - they didn't give us any guidelines at all. She was supposed to come home on 0.2 flow (although she was only on 0.05 in the NICU) but the regulator they gave us was in fractions (Respira is trying to hunt down one in decimals for our gas O2 tanks...long story) and they told us to put her on 1/4. She's been on 1/8 the past few days though because every time I put her at 1/4 she continuously high-sats. Right now she's sitting at a O2 saturation of 98 while on 1/8 and she's asleep and she usually doesn't breathe deeply when she's asleep so I think I could probably wean her again but I'm going to hold off on doing so until we talk to the pulmonologist.

I haven't made the pulmonologist appointment yet. I need to go look at our discharge papers and find out when they want me to go see him and then call and make the appointment but unfortunately I can't reach the papers from where I am currently tethered by her O2


Ah, the NICU made my pulmo appointment for me, thank goodness. It takes like a month to get in if he's NOT busy.

When they first brought my concentrator (are you using a concentrator or a tank as the main O2 source?) they forgot to bring a pediatric flow meter. The lowest that thing went was like 2.0 lpm. Yipes! They sent the peds meter over later that day, thank goodness. I had the decimal/fraction issue when I switched from the concentrator to the portable tanks to go anywhere - all the portable regulators were in fractions. Math was beyond me a lot of days but luckily my Dad was a math major so when I was too groggy to figure it out he did. :)

Hang in there. It's such a royal PITA to not be able to travel around the house at will, but it sounds like she's doing great and won't need it for long at all.

And you're checking your connectors every day, right?
 

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Maggie was on the 1/36 (I think? it was like a puff) but make sure you are checking the connctors etc every few hours. We found out on her amount it was like 11 hours w the small tank so I started bringing that around unless she was sleeping because like said, its such a pain to drag that around or be grounded to one area.

I changed the cannualas every week or so. Do you have a neo or infant size?? We also would take off the O2 when she bathed to give her face a break. About 3 weeks into it, she yanked it out a few times. So I left it off for a few hours w the monitor and nothing happened. We tried to put it back in and she fought us. So left the monitor on, nothing happened. Took it off for good the next day and she never looked back. I hope you have the same deal!
 

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Discussion Starter · #10 ·
By "checking the connectors" do y'all mean checking to make sure the tube/cannula is still connected to the O2 source?

So the fact that I had to change her cannula 5 days in wasn't too bad


We have a concentrator in our bedroom (which is where she sleeps too right now) but that flowmeter only goes down to 1/8lpm. Right now we have it on "about" 0.2 lpm. Then on the tanks, which we use in the rest of the house, we have her at 1/8th. They sent us home on 1/4 but she was constantly at 100% O2 saturation and so I turned her down. She's desatted maybe once a day since we got her home and every time it was because she was eating too eagerly and choked
Otherwise while on 1/8th she hangs out in the 90's (usually 97-99%) about 95% of the time.

We're moving into a two bedroom apartment December 8th. I think I'll probably put the concentrator in her bedroom beside the crib for naps/if she starts sleeping in there, one larger tank in our living room, and one larger tank in our bedroom.

She did her own little room air test the other day and did great...she pulled the prongs off her face during a nap and because she was high satting we left her alone. They stayed off for over a half hour and she was fine.


Our pulmonologist appt is next Friday. I'm hoping he'll suggest turning her down again. I cannot wait to get her off of O2...
 

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I hope you don't mind me jumping in. Ds was on O2 for six months at home and then on and off for the next couple years during colds although he was not a preemie. We changed his cannula every two to four weeks depending on whether he had a cold or not. We had a concentrator and we put it smack dab in the middle of the house and requested an extension for it. I believe, but I'd have to double check, that we had a 25 ft cord attached to another 25 foot cord which attached to his cannula. We could go anywhere in our house. We also requested and got one concentrator for each floor of our house (two stories) and then we only did the one 25 foot cord and his cannula. Our biggest issue was keeping him attached to the monitor as that didn't have an extension.

As far as weaning, we did it ourselves as we saw fit. When he hit 100% for more than a few days and his heartrate was within his "comfort zone", we lowered him. We were just told to keep him above 94% the majority of the time.

I have some cannulas here at home. I think they are pediatric sized. If anyone needs a spare, PM me.
 

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Quote:

Originally Posted by ksera05 View Post
By "checking the connectors" do y'all mean checking to make sure the tube/cannula is still connected to the O2 source?

Yes! Check all the connections to make sure nothing has come loose. No one ever told me that and I lost 10 years off my life back when Kate truly needed the O2 and one of them just slipped out. Basically, the alarms went off while she napped and when I went in she was quite dusky. I immediately cranked up the flowmeter but it was at zero and didn't move. I thought the concentrator had broken so I hooked her up to the backup tank in a flash. Then I saw that the hose had just popped off the flowmeter. Worst few moments of my life (but also a good demonstration to myself that I was prepared for an emergency!). Given what you just said about her 30 minute self-administered room air test
you probably would not find yourself in a similar situation, but better to be safe and methodical about it.
 

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We had the connectors or the gauge pop out occasionally. Just to give you an idea how little Maggie was on, it didnt matter. We only would know when we noticed the cannula had moisture in it. By then it was the last few days she was on O2 anyhow. But for the kids who truly need O2 it could be a nightmare.
 

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Discussion Starter · #14 ·
No one told us about checking the connectors. Thank you for the warning.

Betsy - my heart would have stopped too!! Good thing you had a backup tank in there...

I'm just hoping she does that well when we go in for the pulmonologist's administered room test this Friday
 

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I will definitely keep my fingers crossed for her appointment!

And I had to share this with you. At some point when they were in the NICU, Ryan and I watched "Walk The Line" - the Johnny Cash movie. That song really gets stuck in your head. When Kate came home on O2 I used to sing to her:

I keep a pulse-ox on this girl of mine.
I keep her door wide open all the time.
I keep a close watch on her vital signs.
Because she's mine, I watch her signs.


It always made me chuckle, so I figured I'd pass it on. To this day that song makes me think of my little muffin and smile at how far she has come.
 

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Discussion Starter · #16 ·
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Originally Posted by OGirlieMama View Post
I will definitely keep my fingers crossed for her appointment!

And I had to share this with you. At some point when they were in the NICU, Ryan and I watched "Walk The Line" - the Johnny Cash movie. That song really gets stuck in your head. When Kate came home on O2 I used to sing to her:

I keep a pulse-ox on this girl of mine.
I keep her door wide open all the time.
I keep a close watch on her vital signs.
Because she's mine, I watch her signs.


It always made me chuckle, so I figured I'd pass it on. To this day that song makes me think of my little muffin and smile at how far she has come.
Walk the Line is actually next on our Netflix list. I'm now going to have that going through my head when we watch it. hehehe.
 
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