Leaks/restlessness post T&A (child)

My daughter has previously tolerated CPAP perfectly. Post T&A surgery, she does well the first part of the night, then gets restless and tosses in bed by about 4am and I'm fighting leaks and her restlessness until morning. We tried 2 different masks (nasal and pillows), she is also leaking from her mouth. Could it be because her anatomy changed? Her adenoids were 100% occlusive, her tonsils were enlarged but not obstructive. She has a bulky back of the tongue, so they don't expect to have her off CPAP.

Hi, it would be best if you could provide the fullest name and model # possible (rather than just brand) of the machine she uses. And then we can tell if you can download free software (Sleepyhead) to get a better idea of what happens overnight from many angles. We can help you get set up to do that.

She uses the Trilogy Ventilator to deliver CPAP. She would lose her airway before surgery and I wanted a battery back up for if the power went out of if she fell asleep in the car. It's a gigantic setup, but her having an airway is worth it.

There should be some knowledgable people around shortly.

She should really have a new sleep/titration study after surgery

How long post surgery?

One of the members here uses a Trilogy, but doesn't come onto the forum that often anymore. If you register as a member, however, you could send her a PM and see if she answers... we'll give you more info once you've signed in.

ENT doesn't want a repeat study until 6-8 weeks post op. Part of me things it's too long. She see's the pulmonologist to schedule it in a week.

ENT agreed to do a study early, but we got her into a full face mask last night and she slept like a baby. We are going to wait until April 21st for a repeat study.

MamaOf4 wrote:My daughter

How old is she?

She will be 5 in 2 weeks

mjmia3 wrote:ENT agreed to do a study early, but we got her into a full face mask last night and she slept like a baby. We are going to wait until April 21st for a repeat study.

Julie suggested I look at this thread. Sounds like the full face mask has helped. Which one is she using?

MamaOf4 wrote: She has a bulky back of the tongue, so they don't expect to have her off CPAP.

mjmia3 wrote:She will be 5 in 2 weeks

I encourage you to have your daughter evaluated now by an orthodontist who has as a specialty treating sleep apnea with orthodontics. If you live in an urban area, such an orthodontist should not be too hard to find.

There is a lot that can be done with jaw and palate expanders. Just one extra millimeter of clearance can sometimes cure a patient of sleep apnea for life. The orthodontist will determine if treatment is appropriate and will recommend the best age to start treatment. If not 100% confident in the proposal, a second opinion would be a good thing to pursue.

mjmia3 wrote:ENT agreed to do a study early, but we got her into a full face mask last night and she slept like a baby. We are going to wait until April 21st for a repeat study.

There needs to be time for the healing and for the swelling to go down for it to be a good study. In the mean time things might be worse until that happens. I am glad the new mask worked.

How do I post a picture. To get the good seal, the mask had to go over her eyes.