Friday, September 11, 2009

Endless Beeping

The beeping is driving us crazy. Back when Penny went on oxygen she couldn't roll or crawl - she slept on her back and pretty much left the nasal cannula alone. Fast forward two months and we have a very different and determined little girl...who "desats" all night long - starting when we sit down for dinner. As her pulminologist understated "oxygen can be challenging in kids her age". It is much worse dealing with the damn beeping than the 2x a night crying/feeding I did when they were infants.


My blog has a limited audience but I think if anyone else has to deal with this (I'm starting to feel like we are the only parents in this situation) they might be happy to have our "experiments" to help them.
  • Mask. We started using a mask instead of a nasal cannula because it was easier to readjust it in the middle of the night (instead of taping the nasal cannula). If you up the O2 level it can function a bit like a "blow-by". But Penny is a stomach sleeper and turns her head a lot so we had to go in to adjust it all the time. We have now pretty much abandoned the mask.
  • Duaderm on her cheeks (near nose), one tegaderm on top, then cannula, then another tegaderm to secure it. The nurse advised this but Penny still pulls them off.
  • Pediatric arm restraints. Husband hates them but I think they do work. Last night after our 15th trip into the room I put them on her, then taped the nasal cannula in place. I didn't have to go in there again. By the time we went in (at 7:30 am!) she had managed to remove one restraint. When the other came off she sat up and pulled the tape/cannula off before I even had the chance to do so.

  • Cannula behind the head. We are supposed to secure it under her chin. Making it a million times easier to pull off. I guess there is a chocking risk about having it behind her head (because when she pulls it off it goes around her neck) but since she is on a heart/O2 monitor it is hard to get really exercised about that risk.
  • Cutting the nasal cannula. We cut off the prongs. Her nose is runny (has been for 3 months) and she was always rubbing at her nose when the prongs were in. Instead the nasal cannula "holes" are just under her nose. Since she is also a mouth breather some O2 could also make its way into her mouth. Husband is going to try to take a tube and glue it to a pacifier to see if she'll keep it in that way.
  • Trading "shifts". We keep thinking this is a "temporary" situation and have been dealing with it on an ad-hoc basis. Lots of sighing and "can you go in this time" conversations. We need to be better about "assigning" nights so the other parent can get some rest (maybe in the guest room so he/she isn't subject to the endless beeping?).

Our pulmonologist is trying to move up her surgery (not looking likely) and offered to check her into the hospital if we need a break. I think that is a waste of medical resources and would be tough on us as a family. I'd love to have an oxygen tent but they aren't used any more because of fire risk.

The crazy thing is that I know I'm going to miss the monitor when it hopefully (God, please) is gone. It's a constant reassurance that my baby girl is alive. I suspect once it is gone I'll be getting out of bed to check on them both more often like I did before Penny went on oxygen.

6 comments:

ABS said...

She's such a determined little girl. I wonder where she gets that?? Hopefully this will all soon be a distant memory and there will be sleep in the Esq household once more!!

Nicole S. said...

I am sure there is someon e out there googling "how to keep nasal cannula on" and hopefully they are finding you here! And hopefully this will be over soon and Mommy, Daddy and Penny can get a good nights sleep.

LauraC said...

I get blog hits every single day for helmets. So worth it to write about.

I hope you have a big celebration planned for when this is over!!!

Helen said...

Beep

she's definitely got your stubborn side, my friend:)

Counting down with you till my goddaughter is adnoidless

almostima said...

Also, have you considered hiring back the baby nurse for a night or two and both you guys getting some much needed sleep (maybe in a hotel?)

Einat

ElizabethEK said...

Good luck. This is tough.