sleep apnea

[suemp]

anyone had a baby with this? my son is 10 months and has this due to laryngomalacia and tracheomalacia. how do you get them to sleep thru? do i just have to wait till his older before i get sleep lol. his condition is "moderate" and he wakes about 5 times. it drops the worst (his stats) just as he is dozing off

[Nowhere]

hey
mikenzee also has both laryngoad traceomalacia, she is 17 months old and has actauly had to operations to corect it but its still a problem, we also have issues with her sleeping and also waking up tired even is she does sleep due to low oxygen when sleeping she bases at around 92 to 95 whilst sleeping so not low enough to require oxygen on a regular basis as her her cut of is 92

Im no expert on it but i wil tell you what we do with her to rey and help the situation i make sure her cot is elevated and i position on her tummy with her head to the side and and slightly up to keep her air ways as open as we can,

She stil wakes up alot and has the ocasional apnea she isnt on a hospital moniter any more just a mat as she was getting way to tangled to many lines KWIM, so i dont really know of any thing that wil help I know its hard but

Is your son on oygen or c pap at night or just room air, is he on a pulse ox moniter at home, and what is he dropping to, and does her go tacacardic or brady with the de sats or just the o2 drops, have they ever looked at surgery to help it

hope you dont mind all the questions, just trying to think of stuff and the more info the better

hope he has a good night

[suemp]

thanks for the info. kane drops to 89 which they say is safe. he is on no machines and they are considering surgery but want to delay it as long as possible to try and avoid it. he is a wriggle bum and moves around alot but we are both so tired.he had the sleep study at the mater brisbane sleep clinic so i know its accurate.
wat annoyed me is they told me he was fine , no apnea so i tried being tougher and lettin him cry it out more but it wasnt workin too well. wen i saw his anethesist yesterday about being put under for mri he refused to do that for another 6 months due to the malacia being as bad as it is plus apnea it makes it hard to pull tube out and would need to be in HDU which they want to avoid. i asked to see the sleep clinic report and i was shocked at what i read. i wish they wwere honest with me to start with. why tell me one thing and the paeds something else?

[Nowhere]

General anastetic is risky with these kids i know with my DD she needs to be on vent post op and then requires oxygen for a veiw day while it all settles down angain but then if somethings gota be done its gota be done so its a hard decision

IS 89 his base line o2 when sleeping or is that just momentary drops if it just momentary than i agree thats okay Kenzee drops to low 80 as well but self recoveres to her base line which is a borderline base anyway, but 89 as a base is from what i know pretty low

It is frustrating when you get a test one and think its all good til you see your own pead and they tell you the truth, we get that alot,

I understand the avoiding the laryngomalacia operation or any op for that mater we had mikis fisrt air way op and 8 months old ( as her life was in danger) then again at 11 months she was still really bad and needed a second go, we are still under the ENT and went back a few weeks ago and he was still questioning about doing another one but we decided against it a she has already had a lot of work done and any more the risk of a trac and constant aspiration are alot higher, if she is stil destatsing in a few years and it continuos so afect her he is going to take out her tonsils and adernoids before operating on the airways again

Good luck with your son, would the pead consider letting your son be on a pulse oxymeter at home so that you can try the sleep training with out the added stress of wondering about is levals

[suemp]

89 is his drop from what i can remeber them saying. they said nothing about his base level. and that he has hyponapea (sp?) when first going to sleep...which is apparantly the struggle to breath or something. its all so confusing.
the mri is to see why he has seizures so they are trying to get paeds to postpone that one as it isnt life threatening.
i have done sleep training. and it works for a while but he keeps waking up still. its not me being paranoid, its him physically not being able to sleep straight thru.
i have resorted to seein a naturapath. can you tell im desperate lol

[Nowhere]

hugs darl i know your not paranoid sweet my 17 month old stil never sleeps through, and wil not let her cry either as she wil de stat like you boy does nut fun i know

Has he has a EEG done kenzee had hers yesturday to check for seizures ir abnormal brain activity, the MRI will be the next one but if that need t be done im hopeing they will piggy back it to her J tube surgery (if we go there ) rather then doing a GA just for a test kwim

Big hugs to you i hope he improves soon, i can imagine its driving you nuts,

Does his laryngotraceomalacia affect his eating at all or is he all good in that way

Why are sick kids such hard work ???????

[Jeffy]

Oh, Sue - I can completely understand why you don't feel like talking now! You must be absolutely exhausted. We're all there in October bubs when you feel like having a vent. As a matter of fact, I'm off there now to have a mini-whinge...:kiss:

[suemp]

jeffy, thanks mate
m/mum.. thanks so much, kane had an eeg which was very abnormal hence the reason they want an mri but the anethesisist wants to delay it
im lucky with the food intake. kanes a pig. he has trouble if it is different textures mixed to gether..ie puree and lumps he gags. but most finger food he will have a go at.
i know wat you mean about sick kids. i went thru hell with ds1... different medical conditions all together, i thought that gave me immunity from having another sick kid lol
the last week kane has been screamin all thru the night. im so hoping its teeth and will resolve soon

[suemp]

ps good luck with mikenzees eeg...atleast thats one easy test they get to go thru lol...although i dont know how still a 17 month old will sit so exttra :hugs: for that 1

[Nowhere]

no worries

How did i get 17 monthsold to stay stil for EEG, i am so nevver having that test done again, it was a night mare she was stil for a bit then sceremed her head of for some time then we finaly got her too sleep, it was so hard never again

we stil waiting on reslults, i am a bit concerned, the part where she slept they used the white lights to flash at her and she started twitching in her sleep, not sure why but the test lady was saying she wil be pointing it out to the neuro, i hope its nothing wer really do not want another diagnosis