For those w/ pulse ox at home...

mcdev

...how do you survive the day???  We just got ours today and it is impossible to keep  on her foot.  We only need to use it during eating/sleeping, but it has me in tears of frustration.  I am forecasting no sleep tonight at this rate.  Any advice?

Also, does your dc ever desat while on oxygen?  We've been home for almost 3 months now without a pulse ox, just oxygen and apnea monitor and she has been doing GREAT.  Oxygen was weaned by our pediatrician to only eating/sleeping.  We FINALLY got our appointment with the pulmonologist and they ordered a pulse ox as a precaution.  I was so shocked to see that she is desating while on her oxygen.  I am scared that she is taking steps back.  What do you do when your dc desats while already on oxygen?

preemieparent

My daughter has had a pulse ox for over a year.    These are some of the things I have learned:

To keep it on her foot I use 3M Coban tape.  It's a brown stretchy tape that sticks only to itself.   You can order it online.  Wrap the probe so that the wire is running up the top of her foot.   Once it's on her toe, wrap the tape around her foot so that it holds the wire in place.  I usually just wrap it 2-3 times and that's enough.  Once you wrap her foot, put a sock on.   The tighter the better so she can't pull it off (if she does that yet).   That will usually keep the pulse ox on.

For desating I would look at these questions -  

• what is she doing when she desats?  If she is overexerting herself that could cause the desat
• Is she moving around a lot?  Is her foot moving around a lot?    Our daughter used to set her pulse ox off all the time just by kicking her foot around.   If she is moving around than wait a bit and see if it goes back up when she settles down.
• How low is her number?   Does she bring herself back up?   If she only drops for a couple of seconds than brings herself back up than it's probably okay
• Make sure the pulse ox is reading correctly.  If it's not wrapped around her toe enough or she has made it loose than it will show a desat even though it's not really a desat.
• Make a note of the desats and what she is doing and show the pulminologist so he/she can decide what to do.
• If she desats for awhile, turn the oxygen up a little bit and see if she goes up.

I hope that helps!!  If you have any other questions or need more info just let me know.

pumpkinbug

DS is on a pulse ox all day every day. We only use it as a precaution which is why pulmonology ordered it for you...

Basically the pulse ox will give you DC base line. It also helps to notice when and what DC is doing when they desat.

DS is trached and I use a trach tie or posey patch around his pulse ox probe, or like suggested tape. The best way for us to get an accurate read is to put the probe on the outside of the little foot by the little toe. A simple sock may help too. The probes can be sensitive to light or movement.

I always look at DS pulse ox as a guide, but I have trained myself to look at his color, demeanor as real guides of trouble. I am sorry that you are in pulse ox hell, the first few days can be just that. If desating when on oxygen try bumping it up, if it is continual I would bring it to pulmonology, this is usually the first sign that DS is in respitory distress with no symptoms showing externally.

Good luck with your new friend...and please feel free to contact me if I can help. I can send you a few trach ties if interested.