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Hi everyone,
This is my first time posting, but have spent the last few months lurking while waiting for approval as a foster parent. I have found everyone's experience so helpful during the looong wait but now have a question of my own.:banana:
I got my first phone call on Friday, a little 13 month old boy who has very poor muscle tone and is the size of a 6month old. The worker said he was on a CPAP machine but he keeps pulling it off. I wasn't sure if he needs it 24/7 or just when asleep. I said no as I am single and am not comfortable taking children on ventilators. But now I am second guessing myself and thinking if it is just when he is asleep it is doable. I am just open for respite or crisis care. I was thinking of ringing the worker back on Monday to see if they are looking for respite.
My question would be anyone with previous experience with this type of thing? Do you need to be up all night to check on them?
Thanks for reading and thank you for all the help and advice I've gotten from this board already :thanks:
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You can put on the alarm so if there is a large leak (and pulling it off would result in that) you would know. My son's alarm is turned off as he rarely takes it off while sleeping.
are you talking about an apnea monitor? if so, we had a fs with one, it was a huge pain in the butt. He was too little to pull it off, but I could imagine how annoying it must have been. Once we figured out how to use it and what to do if he stopped breathing, it wasnt too bad. Luckily our little guy was only on it for 3 months, and he never stopped breathing for more than 15-20 seconds. I think the worst part was the alarm going off when the battery got low (same alarm as if baby is not breathing) it was stressful.
It's usually for sleep apnea but it sounds like your little guy has more problems than that. My husband has a CPAP. He would just stop breathing in his sleep and then his whole body would start jerking until I hit him and he would start breathing again. It would drive me crazy and I couldn't get any rest either:) Anyway, CPAP machines force air into the mouth/nose while a person is sleeping. I can see why an infant wouldn't like it and try to pull it off. There are different types of mouth/nose pieces and straps so you can always talk to his ENT specialist or whoever ordered to get a different breathing piece. Some have more features than others...like alarms, humidifiers, and ability to change the settings. The machines are a bit noisey but very easy to use. It's not like a ventilator at all! It comes all pre-set so you just plug it in, put the plastic piece over his nose/face and turn the machine on. Nothing else to it. The plastic piece and hose should be cleaned periodically.
ost people I know consider CPAP machines to be machinations from hell. However, for those of us who cannot sleep without them, they're a godsend.
My dentist has sleep apnea and one day when I was there I was telling him about my experiences and referred him to my doctor and showed him that article . I also told him not to get a plastic face mask, but to get the Sleep Weave (fabric) mask. He did go, had the sleep test, and the next time I went he ran up to give me a giant bear hug and thanked me profusely for lecturing him and literally changing his life. He said, not only is he now sleeping through the night, but his blood pressure is down, his cholesterol is down, and he's lost some weight. His regular doctor is thrilled.
I find the sleep apnea thing relative to wearing glasses, a hearing aid, taking medications for your health. Many people are just in denial and won't do it, even if it will improve their health and wellbeing. But I think the type of mask you get makes all the difference in the world. Good luck convincing your loved one.
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