Work in progress: CPAP mask for Baby

My daughter started CPAP last Thursday. This is a tough transition for kids, and she’s doing ok but it’s still a bumpy road. For many of her transitions with medical stuff, we have used her dolls or stuffed animals to help (her port in her chest for cancer tx, her urology surgeries, etc). Her mask kit had extra parts so I am making the straps to hold it on her doll (which is named “Baby” lol). She loves it and roleplays with Baby about wearing her mask, too. (I temporarily used a lanyard for the first few nights.)
Hopefully I’ll get it cut tomorrow. :slightly_smiling_face:

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Thank you for sharing this with us. I’m 75 and hate using my cpap. My prayers go out to your daughter. You are very innovative using her doll for a model.

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It’s awful that she has to deal with this on top of everything else she deals with, but how cool is it that you can help her in this way?

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What a great practical cut! Best wishes to your daughter. She has already faced many health challenges, and I hope this is a fairly easy transition. Your innovation and her strength make a great team.

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This is such a cool idea. Awesome her doll can go through things she goes through. It always amazes me how resilient kids are. No matter what comes their way, they just seem to cope and adapt. So much better than adults. It’s still so awful to see her go through these things. Hard as a parent. Prayers for you and your family.

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what a great way to help your daughter! I’ll bet the role-play has a positive effect on her health.

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Thank you, all!
I’m out of “likes” :smiley:

@nikonpro1 My husband and I also use CPAP - sorry to hear you hate using yours! I’ve gotten used to mine and it doesn’t really bother me, I just get annoyed at trying to keep up with cleaning it. lol (As if I don’t have enough else to remember to do LOL) Thank you for the kind words.
Also - tell me about your name. I shoot Canon but haven’t been doing anything (with my nice gear) for a long time now because of problems with my hands going numb holding my camera :sob:

@cynd11 she just rolls with most things! Never looks back and complains about the past. I don’ t know if that’s only related to her communication challenges (it could be, she struggles most with expressive communication) or what. (She remembers plenty, she retells stories about things we do, over and over and over…) I’m glad I can help her in any way, after all she’s been through!

@dklgood Thank you! I hope she transitions quickly because I really think it will help with school SO MUCH.

@rvogt Thanks! Yes, I’m endlessly amazed at how resilient she is, it’s unbelievable. Thank you!

She has been doing well with putting the mask on, but then when I go into her room at night, she has taken it off. I will have to keep working on things. They do have a desensitization clinic but I don’t know if that will help because I think she’s just taking it off in her sleep. I’m going to see if she will let me put her mask on her during the day so she just gets used to the way it feels with it on.

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I haven’t gotten used to my CPAP mask and totally dropped the ball in using it. To be fair, I went “out of compliance,” which I didn’t know was a thing past the first 90 days, and then they wouldn’t send supplies. Now they just keep calling and telling me to order supplies for my health and well-being, but then refuse to send them when I order. It’s a fun game.

Anyway, I love this idea. I do think that wearing it during the day would help. We used to bribe my son with his favorite shows when it was time for his nebulizer. I think it’s hard for us to deal with the medical stuff with kids, but they tend to just roll with things.

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Yeah… when she first had to be catheterized, that was a horrible nightmare for 3 months. Now it’s very manageable and easily bribed most of the time with a video on my phone. lol (And I’m thankful that she has the urological intervention so it’s not like a normal catheterization) At 3 mos she just hit this magic point when things had healed better. But for those first three months, I’m surprised no one thought there was something bad happening here with all of her screaming. :frowning: That was a really rough time.
In comparison, this is a piece of cake. Ha! But so far we haven’t made it more than like 3 hrs total per night.

I can’t sleep without my CPAP now.

Don’t even get me started on the whole fiasco of ordering supplies. ugh.
Thankfully we have a company to work with for her that makes it pretty easy.

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I do this too - with anything on my face when I’m asleep. It’s kinda hard to retrain something you only do when you’re unconscious :-/

I wonder, if you could handle the sleep deprivation, if you could put it back in each time they remove it whether eventually they’d give up.

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Yeah, I am thinking the better option is to just get her comfortable wearing it. So I think I’ll be working on that this week - trying to get her to wear it during the day. I tried yesterday but it was a no go, she was not in the right mood for that at all. :smiley: I’ll try again. And maybe I’ll wear mine. :laughing: (Mine is a full-face mask though, so that will be a labor of love I guess LOL Much harder to wear a full mask around the house than just the nose mask that she has!) :rofl:

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A wonderful idea to use “Baby”! I’m sorry she has had so much to deal with. Hope she is able to acclimate to wearing the CPAP quickly.

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No update today (the day just went differently than expected). Possibly tomorrow. She was extra tired today and tonight’s been rough with keeping mask on. I’ve done my last adjustment for tonight I think. Tomorrow’s a new day. lol

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My nose itches constantly. I tried to use the c-pap but there was no gadget that allowed you to scratch your nose while wearing it so I had to give it up.

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Oh wow. What about taking an antihistamine? I literally take Zyrtec every day of the year and have been using it for like 20 years… I can’t take the generic brand though, it is a real bummer but the brand name is the only one that works for my itchiness. (However I have severe allergies)

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It is not really an allergy, just itches. Voltron works better than antihistamine.

Edit: than not that

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about the CPAP supplies - there are some places where you can order them and they are very reasonably priced. Way cheaper than when it goes through insurance. We used HSA funds to pay for supplies a few times when we were having a hard time getting supplies.

Maybe just get the things you need to be considered in compliance and then you can go back to getting them through insurance? Just a thought.

Please don’t give up! My aunt died at Christmas from not using her CPAP when she was sick - it’s nothing to take lightly.
Ok that’s the end of my speech about that. Lol

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Thank you. I haven’t given up. I’m just frustrated that they have taken an experience which is already challenging and made it so much worse in an attempt to force me to use the equipment I want to use in the first place.

My doctor sent over the prescription so I can use it where I want without insurance involvement. If you have any places online where you had good experiences, please let me know! And I’m heading to see an ENT because I didn’t realize how poorly I breathe through my nose at night until I started with the CPAP. I am actually more motivated than most because I can feel the impact on my brain function and it’s driving me crazy.

All that said, I’m so sorry to hear about your aunt. :frowning:

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Change the headgear and go to a nasal cushion. You can scratch your nose all you like :rofl:

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tried that