Leaks/restlessness post T&A (child)

MamaOf4 · Post by **MamaOf4** » Sun Mar 20, 2016 12:17 am

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.

Julie · Post by **Julie** » Sun Mar 20, 2016 6:04 am

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.

MamaOf4 · Post by **MamaOf4** » Sun Mar 20, 2016 8:57 am

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.

Julie · Post by **Julie** » Sun Mar 20, 2016 9:00 am

There should be some knowledgable people around shortly.

BlackSpinner · Post by **BlackSpinner** » Sun Mar 20, 2016 10:26 am

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

Janknitz · Post by **Janknitz** » Sun Mar 20, 2016 12:58 pm

How long post surgery?

Julie · Post by **Julie** » Sun Mar 20, 2016 1:19 pm

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.

mjmia3 · Post by **mjmia3** » Sun Mar 20, 2016 11:44 pm

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.

mjmia3 · Post by **mjmia3** » Wed Mar 23, 2016 8:45 am

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.

ChicagoGranny · Post by **ChicagoGranny** » Wed Mar 23, 2016 9:14 am

MamaOf4 wrote:My daughter

How old is she?

mjmia3 · Post by **mjmia3** » Wed Mar 23, 2016 10:18 am

She will be 5 in 2 weeks

Madalot · Post by **Madalot** » Wed Mar 23, 2016 10:29 am

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?

ChicagoGranny · Post by **ChicagoGranny** » Wed Mar 23, 2016 10:50 am

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.

BlackSpinner · Post by **BlackSpinner** » Wed Mar 23, 2016 11:31 am

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.

mjmia3 · Post by **mjmia3** » Wed Mar 23, 2016 6:58 pm

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

Leaks/restlessness post T&A (child)

Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)

Re: Leaks/restlessness post T&A (child)