Sorry havent' been around much lately but life has been rough.  We did get Will's BiPAP finally about 10 days ago.  We are using a Petite comfort Gel Nasal mask, and have a Respironics Mseries Auto BiPAP w/ heated humidifier (but he doesn't tolerate the humidity so just leave it at 0).  For now we are set at 8 inspir and 4 expir, with the Auto turned off for now.  As soon as we get a week that doesn't have something going every night we will go in for a titration with the machine and get our real settings.  
The first few nights Will slept better than he has in years, made it through most of the night with only one really long awakening and a lot less restless.  Since then we are back to the up consistently through the night, begging for tylenol, talking, flopping and waking at 3-4 and not settling back to sleep.  Some nights are better and we just have our 1130 - 1 awake, and then sometimes he sleeps till 7ish.  
We are getting consistently about 9.2 hrs on the machine, and averaging around 2.9-3.2 for the AHI (which is actually higher than his sleep study i think).  His big issue is with CO2 and we can't measure that at home so not sure, what we'll see there.  We have not been able to take him of his O2 either at night or during the day yet like the Drs had hoped, but may take some time too.
The question i had was even though we will go in for a titration study and set numbers for this machine, what would the pros and cons be of just setting the ranges and letting the Auto kind of dial things in for Will.  He has extremely variable days with breathing effort, muscle strength, levels of pain, and general fatigue wouldn't it make sense to set the machine to Auto and let it figure out where he needs to be for the night?  i know you set a high and a low with that so there is some control.  Just wondering what the thoughts were.
Also i know from reading some of the posts on the adult side that it's not uncommon to have a few fairly good nights and then see a decline for awhile.  Does anyone know why that happens? and how long it might last?  I would love to get Will sleeping better just starting to think that the BiPAP is not going to be the final answer like we thought it would be.
Sorry this is so long Thanks for any help
Sarah

Hi Sarah,

I wish Will was doing better on the bi-pap.  Chris is on cpap also at 8.  I have also noticed a big difference in how she sleep from night to night. I have also noticed quite a difference in how she sleeps from night to night.  The first few nights she was very calm, but is now as lively as before treatment.  I would like to give you answers, but I am in the same boat.  Chris's machine is cpap with apap ability.  I wish they would use the apap and solve these problems.  Make them listen to you about the differences in Will's tolerances from day to day.  If the machine will adapt to him that would be wonderful.

Hang in there,

Susanne