I have a 14 months old boy that was diagnosed with severe OSA when he was 7 months old. His overall apnea/hypopnea index was increased to 23.8 per hour. His lowest oxygen saturation was 80%.

We have him on oxygen for which he tolerates a nose cannula. He was evaluated by an ENT but his adenoids and tonsils were normal, then we went to a craniofacial specialist to check a possible midface hypoplasia. The CT scan shows a mild degree of flatness on his bone structure but they weren’t so sure that it was severe to create the OSA and no surgery was advised.

We started on a bipap machine two weeks ago but he only has been able to tolerate it for 1 hour and 4 hours the first night. He wakes in up every hour and found the way to remove the mask. The only way he is wearing the mask is when he sleep on my lap but as soon as I put him on bed he wakes up and start crying. I’ve tried one every other night and rest on weekends just to do it slow and leave him sleep with the oxygen.
 
I feel tired and afraid because the doctor told me that if he does not tolerate the Bipap machine we need to discuss a tracheotomy (opening a hole in his trachea and insert a tube). I’m not sure if that will be the right thing to do because a tracheotomy will create risks of infection, intense caring and other inconveniences

Has any one going to this procedure or have been advise for a doctor about this?

Janneth,

What a horrible decision to have to make!!  You are right about all of the complications which come with a trach.  Have you seen this study?

http://www.apneasupport.org/viewtopic.php?t=11194

I am sure some of the other great parents here will respond to your post.

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Hi Janneth,
I know that it is scarey to think about a trache.  I am wondering, how much of the time is his oxygen below 85?  how long is it down to 80?  Does it stay low, or just go down for a few seconds and come back up and then go down again?  (My son's goes down to 77 but it is for such a brief time the doctors are not concerned about it....which is good because my son won't tolerate the oxygen cannula longer than 1 minute!).

Has the dr. discussed the pros & cons of leaving him on the oxygen w/out cpap or trache?  Is he having any other health problems now? (with his heart, lungs, kidneys?)  If not, maybe it will be ok to continue to work on the cpap on a gradual basis.  I think it is common to tolerate it for only 1-2 hours at a time when first getting used to it.  Don't give up hope yet.

H;,
Thanks for your response.
It is a good question to make to the sleep Dr. I have the appt for Nov 09.

The only thing I can interpret from the sleep report is that: "He spent about 1 minute with O2 saturations below 90% but I don't know how many times. he has 53 episodes of desturations on a total sleep time of 453 minutes.

With the O2 on 0.75 LPM the lowest oxigen saturation was 95% but he continued to have obstructive sleep apnea and hypopneas even with O2.

He had a Cardilogy evaluation and was normal. He is currently with pulmicort to reduce the swelling in the arways due that he was aspiraring liquid to his lungs but that is being taking care since he was 8 months ( I thick the liquids) and he doesn't wheeze any more only when he got colds.

Does your son have an OSA? and for how long?

Thanks

Janneth

Hi there,

Sorry to hear that your son is having such a hard time.

Have you tried having him fall asleep in a car seat or carrier that mimics that feeling of being held on your lap?  

Also, what kind of mask are you using or are using cannulas?  Maybe the mask is too tight on him or doesn't fit him right.  My three year old is wearing a mask that doesn't fit great and she's not thrilled about it.  She is wearing it though.  

Is the machine really noisy?  Could that be bothering him?

Don't give up on trying different things with the CPAP system.  Its so frustrating, but it might take some time to find the right fit for you.  

I have not been able to find any small masks on the American market (or the Canadian or European markets for that matter).   We need to get these manufacturers to make the right size masks for our little ones!  

Keep us posted.

-Michelle

MY GRAN.DAUGHTER WEARS A CPAP CONNECTED TO HER TRACH. AS SHE NEEDED THE TRACH FOR SUCTIOING HER LUNGS AS SHE WAS ASPERATING HER FOOD INTO HER LUNGS-WE HAVE SINCE GROWN AWAY FROM ASPERATING BUT FIND OUT SHE HAS APNEA AND WILL NOT ADJUST TO A FACE MASK SO WE USE THE TRACH OPENING FOR HER HOOKUP AT NITE.WORKS GREAT FOR HER BUT WOULD LOVE TO GRADUATE HER TO A FACE MASK AND LET THE TRACH HEAL SHUT BUT SHE WILL NOT TOLERATE THE FACE MASK.
MAY I MENTION SHE HAS DOWNS SO GETTING HER TO COOPERATE IS NOT EASY.
WE ARE THANKFUL THOUGH THAT THIS WORKS FOR HER.THANKS FOR LISTENING.
CONNIE

I used to do home care and set up and manage people on BiPAP machines at home. Right now I work in a pediatric sleep lab, in fact that's where I am right now. :) So, here's my two cent's worth.

14 months is a really tough age to have to get used to a BiPAP machine. If he doesn't hate the machine too badly, maybe you could let him wear it during to day . You could even make a game out of it, like put it over your nose and then his and play "see who can wear it the longest," or something like that. It won't harm him to wear the machine while he's awake. The more he's exposed to it, the sooner it will become more familiar, and therefore less scary to him. Even adults often have trouble the first month or so. I tell my patients to just be persistent. Put the machine on him every night. If it's off when you go to check on him, put it back on. It's best if he wears it all night, but even a few hours is better than nothing. Sometimes they are taking it off in their sleep (even adults often do this), and after they've become used to it they stop pulling it off so often. Some people with apneas take to BiPAP like a duck to water, but the vast majority (both kids and adults) have to get used to it. In my experience it seems to take 3-4 weeks for the average adult to get used to the machine, and even longer for kids. That you use his oxygen when you're unable to get him to wear the BiPAP is great! Even with severe obstructions, oxygen helps a lot.

Tracheostomy is a scary word! If he were totally unable to get used to the BiPAP, I'd be tempted to ask my ENT if it wouldn't be worth at least trying to take out his tonsils and adenoids. Sometimes they can be normally sized, but if the child has a smaller than average airway getting rid of them helps. If he refused, I'd get a second ENT opinion. Unless they are very overweight, or have a neuromuscular disorder, it's been my experience that taking out the tonsils works about 99% of the time. That's just my opinion. Hope this helps. You can send me a private message anytime if you need to talk.  

Donna