Oximeter readings and sip & puff

[JohnHMich]

It is clear that my PALS blood oxygen level is starting to drop. I have been getting readings around 92 the last week or so. It is commonly right before her nap and again near bedtime. She has been using her Trilogy for naps for awhile. She has started using her sip & puff tube in the evenings. The main question is on some sort of mount so she can just turn her head to use the tube. I was thinking something like a gorilla pod with a clamp at each end would work.

Any other things that we can try to slow the drop in blood oxygen? Talking is definitely getting harder and she gets out of breath. The eye gaze is still not being used very much. We switched her over to extended wear contacts to eliminate some of the problems with eye tracking from her progressive lenses.

 

[lgelb]

Yes, anything that keeps the mouthpiece and tube where she can reach it, without pinching off the tube, is fine. Setups differ, so whatever works. There are rigid top sections that fit the hose, that you can attach the mouthpiece to.

Using the Trilogy more may improve sats, but CO2 retention should not affect sats till late in the disease. So I would be focusing more on hours of use, esp. since you say the drops are right before she gets on the Trilogy. Settings might need adjustment as well.

Best,
Laurie