Hello! I am Casie, mother of 2 boys. My oldest Skyler is 5 and my youngest Seth is 5months. Skyler was born with many medical complications that involved breathing issues. He was diagnosed with PRS (pierre Robin Sequence) and Stickler Syndrome. He was trached at 5 weeks of age until he was 3.5 years old. Just before his trach was removed he had a tonsil and adnoidectomy to help with any airway obstruction. He was doing well...so we thought until this past July. We were anticipating the closure of his stoma in his neck from the trach this summer but the ENT wantd a baseline sleep study to make sure everything was still going well. Turns out it wasnt.

Skyler was found to have OSA. He was having apnea episodes about one to two times a minute..for a total of 50-55 times an hour. He would desat to about 85-87% for short periods of time, he did self correct but obvioulsly this isnt safe.

He was put on Bi pap in July and has been using the mini me nasal mask since. This seemed to be workiing ok...except Hes a mouth breather...and it has caused HUGE sores on his nose.
He had a follow up study done in november. With increased pressures (he started out on 6 and 8) now on 8 and 12. and soon to be up to something and 16...maybe even 18 i cant remmeber. He had a better sleep study, but not yet "perfect" he was ablle to sleep a bit better , as good as expceted with a mask on and 20 wires...his numbers werer ok, no o2 needed. but his episodes were between 11-15 now. They want him tobe 0-5.

SO we are now to be using the MOJO mask. a full face mask (which makes more sence since hes a mouth breather right? ) and in April he will have another sleep study done to see if the increased pressures and new mask have done the trcik for now.

Heres the catch. Due to Skylers syndrome/ and facial structure...(very flat) the MOJO doesnt get a good seal. Its "moldable" but i can not for the life of me get it to be comptly sealed...unless i sit there and hold it. Which is silly....i need sleep, especeially with a busy 5 year old and a 5 month old.

ANyone else have to deal with small face and this? hs not a candidate for the pilloes and the nasal mask doesnt do the trick.

I am fearful if we cant get this to work in our favor, he will be re trached again and preped for facial/ jaw surgery.
Its been so nice to be trach free for 2 years now! We have adjusted to a somewhat normal life....even tho we have so much other !@#! to deal with....this just seems soo continuous with no end in sight.

I would love to hear some insight and idesa of what can i use or do...even if its to "jimmy rig" some sort of mask for him! Literally I am desperate! LOL

thanks for listenting.
~Casie mom to Skyler 8/21/2002 PRS SS former Trach and g tuber hypotonic ADHD, possible Autisim. and Seth 9/24/2007 One healthy little booger!!