Saturday, June 28, 2008

Now what?

Yesterday turned out to just be a busy day. We got going, finally did get the kids dressed :) They had lunch, went down for naps, then the exciting stuff started happening LOL. The med supplies guy came with an "oxygen compressor". Yep, it's this huge heavy box that is used to continuously produce O2 instead of having to use tanks that need refiling. He brought stickers for her face to keep the nasal cannula in her nose, a few more cannula- including 2 'infant' size ones since that's what we used at the hospital but they'd sent us home with 'pediatric' ones based on her age... He also brought two new leads for the monitor. They're the little sticky things that wrap around your finger or toe and glow. It plugs in and measures the heart rate and the oxygen level. Anyway, all stuff we needed, except no extra tanks. So Monday I'll call and have some more portable tanks delivered. After all, we live in FL and if the power goes out then we end up with no oxygen from this machine. Also, if we have any sort of evacuation I'm not sure that this huge machine would fit in our car, so we'd need tanks to bring with us. So... I'll call Monday for those things. It's nice we live in the US where we can pretty much count on having electricity for the most part, but in FL in thunderstorm season it does go out periodically for an hour here or there, and the fear of a hurricane taking it out for a few days is also a possibility!

Ok, about 20 min after he left I heard Emma beeping! I'd monitored her during nap but at the hospital she'd been OK during naps so I didn't immediately put the O2 on. Well, she was beeping from SATS, not HR. Weird. So I let it go a bit and she started alarming again. Her sats which are usually 93 and up even when sleeping were 87 and kept bouncing back down there. So I hauled the machine into the back room where she naps and I hooked her up, used an infant cannula, yay, and went back out to lay down myself. Then she alarmed again. I went in to check on her and the cannula was IN HER MOUTH and she'd CHEWED THROUGH IT! UGG! Aparently that wasn't working. So I grabbed the pediatric one again- didn't want to ruin both the infant ones in the first 20 minutes we have them! and I grabbed the stickers to keep the O2 on her face. I set her all up (amidst crying, poor thing) and went back to lay down. ALARM. She won't keep it on!

So... WHAT DO I DO??? How do you get a young child that just finds it irritating to keep the oxygen on?? I had it snug to her nose, pulled it farily tight with the stickers, wrapped it around the ears and under the chin and tightened it there. No matter what she pulled it down into her mouth and chewed on it! The pediatric cannula is a thicker material so I'll stick to that for a while until we figure this out, but I did try using the infant one she'd mssed up and cutting the prongs off it completely to just let it blow by her nose- a friend said they do this for their daughter. No luck, she still pulled it into her mouth to chew on. I gave her a bib, she likes to chew those, and another chewy toy and left her with those in her mouth. Ten minutes later I answered the alarm and found the tubing IN HER MOUTH. Any ideas??? There's no disciplining her, really. I told her no, put it back in her nose, tapped her mouth said "NO" firmly, but hey, that's about it! I don't want her feeling like she's in trouble and the O2 is a punnishment... I'm at a loss!

She fell asleep really late yesterday for her nap and even in her sleep would rake it down into her mouth. Covering her hand won't work, she either uncovers it or just does it with it covered. By the time we got her up from nap (it was almost 6pm!) I was going crazy with the O2, and she still was having low SATS which is not something she's had in the past very often. Yes, the pulse ox is working fine- we tried it on Mike and I! And we tried going back to the O2 tank instead of the compressor thingy and it was the same. So her SATS really are lower (maybe because she's more active at home??) and the O2 is NOT staying in her nose.

Any thoughts/suggestions? Does anyone else have a little one on O2 that's old enough to figure out how to get it out at all expense and yet young enough to not understand that they need to leave it alone???

I slept most of the night and kicked Mike out of bed ot answer the alarms. Then I slept on the couch until 10. Then I went back to bed until 11. Have I mentioned that I love my husband dearly and he's the most wonderful Daddy in the world? Ah... now it's 11:30, I really should get the kids dressed LOL.


  1. Have you tried putting the cannula/tubing on backwards?

    I'm not sure I can describe what I mean, but I'll try...

    Put it on her face with the little tubes in her nose like usual. When you get to her ears, don't loop it around and down to her neck, leave it behind where she can't get it.

    I don't know if that would even work because I've only seen it done on babies who aren't very strong, and the tubing at her nose will still be there. Even with the stickers it probably won't work but maybe it's worth a try...

  2. When Josiah needs O2, we have to tape (with medical tape, try a few different kinds, some are stonger than others, but some leave more irritation) the canual from the edges of his nose all the way to the ear, becasue if he can get even one finger under it, he pulls it off. We also put it around his head rather than around the ears and under the chin, and then tape the tubing to the back of his neck so that he can not get at it easily. Also run the tubing under the edge or the crib matress so that the shortest piece you can is the only thing in the crib. One night in March, he refused to have it on, but every time her went to sleep his Sats were in teh low 80's, so waht we did was technically a waste in some ways, but did help some. We got him to sleep, layed him on his side, and put the end of the tubing in front of his nose area, taped to the crib sheet and turned it on at double or tripple the rate that he would have had it if he was werign th cannula. His sats were not perfect but were above 92 , and he was so exhausted that he did not shift position for most of the night. So that might be a last ditch effort. His sats tend to run low when he is sick, so anythign above 95 is good for him. His alarm is set for 85, lower than most people, but he does run low a lot, so that is what his pulmonary doc wahts it set at.

    As for the montior, we are having a lot of trouble with that lately (we only use the O2 occassionally, but we monitor every night). We usually put the probe on his big toe, and then put an exta piece of medical tape from the end of the probe tape around the ball of his foot. Then we tape the wire in two more places on his foot, making sure the tape goes all the way around the foot and overlaps itself. Just make sure it is sung but not tight. Then put on a snug fitting sock. Winter works best with feety pajamas with a hole cut in the heel for the wire to go through, but in the summer, especially in FL I would imagine that you would not be puting her into any pajama suits. As it has been hot here in NY, we ahve been having issues with him taking it off at night as he has been sleeping in a onesy. We have had trouble with Josiah wrapping himself up in the cord lately, so we usualy wrap the cord around a couple of crib slats now so that we do not have a lot of slack. And lately I have been getting up in the middle of the night to put it back on becasuse he manages to get it off. But we have has some sucess with the above procedures.

    We are keeping Emma in our prayers, and hoping that she will find a way to tolerate the O2 and probe, and that you all will be able to get some sleep.

  3. Dom wouldn't leave his alone one hospital stay either and we ended up doing 'blow by' o2 for him and keeping his sats ok for him- he typically runs between 96-98 healthy, and when sick, 94-96. it was enough to keep his sats high enough- i can't remember Emma's range of normal right you think that would work?

    Still in our thoughts and prayers!

  4. I know it can be a huge pain and it's not healthy for her but I find it extremely cute how much spunk Ms Emma has. If she doesn't want to eat then she won't! and if she doesn't want something in her nose, well she is going to do everything in her power to make sure it isn't! That baby girl is a fighter, wait until her teenage years :)

    *praying for Emma and her Mommy*

  5. Ok, what about "No-No's". They're what kids wear after they've had facial surgeries so they don't mess with their wounds. It's a splint that you put on their arms so they can't bend their arms to their face. They're easy to take on-off. They're not the most pleasant thing, but at least she couldn't mess with the tubing! My friend's daughter had many surgeries to repair a cleft lip/palate, and she always had these on for several weeks after surgery, even while awake and running around.

  6. Ask the "Oxygen Man" (which is what our oldest called our o2 delivery guy) for lots of extras. (they'll give 'em to you, including the tanks) YOu can also call them over the weekend and they'll deliver if you have to have it.

    Use the tape. Check at CVS/Walgreens. They have really good stuff and tape it from her nose to her ears. You might could get it on her at nap and keep it on her (Just disconnected) so that you only have to tape it once a day. Also, try the infant socks on her hands so she cant get the fingers up under the hose.

    Definitely do get the extra tanks because our compressor burned out, plus like you said, with evacuations or power outages, it could be a problem.

    Also tell the cardio, since they may want to monitor it more or move surgery up or something like that.
    Good luck.


  7. I'd ask - does she absolutely need it? My son would always pull it out, and in retrospect I can see that he DIDN'T need it.

  8. I don't have a whole lot of experience with O2 and kids, but I know a lot of older adults who don't breathe in/out through their nose, and so they put the tube in their mouth so that they're actually getting the Oxygen. Any chance that's what she's doing? Good luck!