My Husband and Sleep Apnea....I need you help

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
frtwome
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Re: My Husband and Sleep Apnea....I need you help

Post by frtwome » Fri Dec 18, 2009 9:09 pm

The DME man is suppose to give me call at soon as he recieves it in his office, and I will ask him what the model is and any other information that he has. He might be giving me a good price on it, because I have to pay cash, I'm not sure. I intend to go online to compare the machine as soon as I know what it is. I think he told me what full face mask, but I'm not positive on that. I though that he said resmed gel, size small. But David has put on a lot of weight, so I don't know. I don't know if that is correct or not. But I will get that info from him.
Thank you all so much for your help. I can't help but feel excited.
Judy

dsm wrote:Judy

You seem to have struck it lucky re the Bipap at $800. That sounds like a good deal. If you can find out what model it is that will help us tell if it is as good a deal as it appears.

Goose hit the nail squarely on the head re the mask. I am still having frustration with my own (a F/F Quattro). Each time my weight fluctuates (is decling as we come into summer) it starts leaking again & I then mess with it for a few nights before it comes right.

But you and David are progressing & there are many here who will try to help you keep up the momentum.

Cheers

DSM

DreamOn
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Re: My Husband and Sleep Apnea....I need you help

Post by DreamOn » Fri Dec 18, 2009 9:45 pm

frtwome wrote:The DME man is suppose to give me call at soon as he recieves it in his office, and I will ask him what the model is and any other information that he has. He might be giving me a good price on it, because I have to pay cash, I'm not sure. I intend to go online to compare the machine as soon as I know what it is. I think he told me what full face mask, but I'm not positive on that. I though that he said resmed gel, size small. But David has put on a lot of weight, so I don't know. I don't know if that is correct or not. But I will get that info from him.
Thank you all so much for your help. I can't help but feel excited.
Judy
Hi Judy,

Yes, it'll help to get the information regarding both BiPAP machine and the mask. For the machine, I suggest that you get the model name and the model number. Many of the names sound similar, and some may have different features, so also having the model number will confirm what you'd actually be purchasing. It may also be a good idea to get the "blower hours" on the used BiPAP machine, which will tell you how many hours the machine was used. Some machines are used very little, as people do sometimes need to trade to a higher level of machine, but other machines can be near the end of their useful life. It'd just be good to know upfront.

If it is a full face mask, as you said earlier, then it must be the Respironics ComfortGel Full Face: https://www.cpap.com/productpage/comfor ... dgear.html. I am not aware of any ResMed full face masks with the word "Gel". ResMed does make a nasal mask called the Mirage SoftGel, however: https://www.cpap.com/productpage/resmed ... dgear.html. You need to clarify with the DME exactly which type and model of mask he's getting. The mask names can be very similar -- just like the machines. I think they're meant to confuse, so write everything down.

I'm happy to hear that things are moving in the right direction. Once you get that information, let us know and I'm sure someone here can explain more about the machine and if there may be a better option.

~ DreamOn

ADDED: While some of us are fortunate and have few challenges adjusting to xPAP, I would say that the majority have to work through numerous problems. As I mentioned earlier, you will want a hose cover, so your husband won't experience rainout (water condensation in the hose, which then travels into the nose). You can improvise a cover at first if needed (cut off arms of old sweatshirts and secure around hose, or wrap it with material). It can sometimes take a while to adjust to the pressure and breathing with the machine. And there are almost always "mask fit" issues once you're home. It takes a while to figure out how tight (or loose) the headgear straps need to be, and masks can leak. There's always the hose right there to deal with. There are many little excuses to quit.

Also, there can be an adjustment period emotionally. He has been having trouble accepting this. At some point, HE is going to need to take ownership of this situation and learn to manage his therapy. Be sensitive to that, as you may need to step back a bit. I hope that your husband will remember the serious consequences of NOT treating his sleep apnea. He does have a severe case, and he'll end up with more than just high blood pressure if he doesn't use his machine every night. I just hope that your husband can be patient through the whole process because if he sticks with it he should see great improvement in his energy and outlook. We're here to help each other through the challenges as they may arise!
Last edited by DreamOn on Fri Dec 18, 2009 10:22 pm, edited 2 times in total.

onesight1
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Re: My Husband and Sleep Apnea....I need you help

Post by onesight1 » Fri Dec 18, 2009 9:53 pm

frtwome wrote:I have to do something now, my husband has severe sleep apnea, he has had it for a couple of years, but was just diagnosed in August 2009. He went to the sleep study in July. They tried the cpap mask on him, he had a terrible time with it, and made the tech remove it. She then tried the nasal mask on him, and the tech said that he did sleep slightly better. But, he should be wearing the mask. He refuses.
He is getting worse, and I am getting more scared. I am going to get at least the nasal mask for him, and hope that it will help some. Where do I start?
Who do I purchase this nasal mask from? Do I need to get a prescription from his doctor? Does health insurance cover this, or do I need to just purchase it. I don't mean to sound so stupid, but I just need to know where to begin. I have to do something, and hope that it will help him. I would love to have my happy, sweet husband back.
Thank you,
Judy

im afraid its going to take a BIG SCARE to get through to him.

i feel very sorry for the patients i see, whom dont buy into the CPAP idea, and refuse treatment... i literally have to show them in depth their PSG findings, explain the effects of HYPOXEMIA and SLEEP FRAGMENTATION...

explain what he is doing in his sleep will eventually kill him... he is basically SNORKELING all night, ( literally , lol)

There are SEVERAL masks... there is a mask that is freakishly large... its called the Respironics Fit-Life... its suppose to be a hospital-orientated mask that fits on everyone. and helps people not feel so constricted ( although... i dont see how it would, its freaking huge.)

but yeah, theres SO MANY masks to choose from... i know how fustrated it can be, hearing someone slowly nail one more nail in their coffin as they sleep.... maybe if you dont sleep with him as punishment, im sure he'll try anything then lol

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DoriC
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Re: My Husband and Sleep Apnea....I need you help

Post by DoriC » Fri Dec 18, 2009 10:46 pm

The Resmed Quattro and the Resmed UltraMirageFF and the Hybrid seem to be very popular. My husband really tried but could never get the Quattro to seal but he finally does well with the UltraMirage now after lots of fiddling and learning about tips and tricks for getting a good seal. After awhile it just becomes routine but requires a mountain of patience and some sleepless nights especially for spouses with resistant husbands. I thought I was hearing things the other morning but after an unusually leaky night Mike jokingly told me that his "girlfriend wasn't very friendly last night". I can handle that kind of competition and hopefully so will you.

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"Do or Do Not-There Is No Try"-"Yoda"
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goose
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Re: My Husband and Sleep Apnea....I need you help

Post by goose » Sat Dec 19, 2009 12:31 am

frtwome wrote: When you say that it took you a year to get comfortable with the right mask, in that year that you were trying different ones, did you feel any better at all within that year? And David naps a lot during the daytime, usually sitting in his chair watching tv, should he be wearing the mask hooked up to the machine during this time also?
Yes, yes yes!!!!!!! I started out with a ComfortGel size medium and had seal problems with it as well as bridge of my nose issues. It took me a few weeks to figure that out -- Secret??? Don't strap it down so tight that the silicone can't inflate and create the seal. With that mask I also had the wrong size!!!! The medium was too large, so I went to a small and viola!! Seal, no big red "gouge" on the bridge of my nose....I was a happy camper......But alas, I'm a tweaker, so as soon as it started to work well, I looked for another challenge.... I used the IOMED Headrest for nearly a year with the factory headgear. It was tearing my hair out - I'm not balding or thinning, but where the forehead piece was for that year is very thin!! Rested Gal has posted a fix for that using Pantyhose tights (the legs) to replace the headgear.....Another service from the good folks here at cpaptalk.com......Mask modification ideas!!! She has awarded many "Lab Rat" awards to those innovative folks that have built a better mouse trap....

Then I found the Activa -- I'm stoked. They advertise a "Active cell" technology that has a different method of inflating than the single membrane masks....It really works!!!! Again, I had the wrong size for about 3 months, though I made it work eventually - by making the headgear very loose.
The idea for most headgear is to hold the mask in place so that the air pressure can inflate the seal. What people tend to do, especially in the beginning, is to crank that sucker down tight which does not allow the seal to inflate. It will also cause a big red mark on the bridge of the nose!! I think that if you get that red mark, the upper straps on the headgear are too tight.....Just my opinion!!!
With my Activa LT (upgraded Activa) I could almost do without the lower section of the headgear, but it does need to be held in place so I can't eliminate it. I also switched sizes to what they call a "Large/Wide", but it's quite small - much smaller than the Large (I think) that I had with the straight Activa....
I'm not sure if ResMed has a FF mask with the "Active Cell" technology, but if they do, I'll be getting one!!!!!! The only time I ever use a FF mask is when I have a cold or my allergies are kicking my butt and I can't breathe through my nose - period. In the 2.5 years I've been a hosehead, I think I've used it 3 or 4 nights.....But as I said in my other post - I have an HC431 (Fisher&Paykel) and I gotta tell you -- it is a crappy mask!!! For me!!! Others have used it very successfully!!!!

That's why there are 100's of different masks and sizes......We all have different faces, different shapes, different needs......
Your mission Judy is to help David find his......Simple stuff (tongue firmly in cheek!!!!)

But again, I tell you that you're doing super. David is a very lucky man to have a partner like you!!!!
take care
cheers
goose

PS -- and yes. When he's napping in the chair, he should be strapped to his machine (I call mine "My little buddy"....I can't imagine sleeping without my little buddy!!!!).

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Wars arise from a failure to understand one another's humanness. Instead of summit meetings, why not have families meet for a picnic and get to know each other while the children play together?

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Muse-Inc
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Re: My Husband and Sleep Apnea....I need you help

Post by Muse-Inc » Sat Dec 19, 2009 1:43 am

Judy, I don't know if $ is an issue, but you might also consider getting a recording oximeter. It records oxygen levels and some have alarms that can be set to go off if the oxygen level drops below a certain level, say 92 or 93%. Mars, if I remember correctly, naps in his recliner with his alarm set to go off if his oxygen level drops -- while I wouldn't recommend that, it might be helpful in helping your husband understand that oxygen deprivation has been occurring when he naps/falls asleep watching TV, etc. If he wears it while watching TV, etc. it might help him recognize how serious the condition is and he just might learn to recognize his symptoms just before the alarm goes off... so it might teach him to start recognizing when he needs to breathe deeper/more efficiently in the daytime or before he nods off. The oxygen deprivation (called desaturations or desats) are the same as what is experienced at certain high altitudes...not good.
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frtwome
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Re: My Husband and Sleep Apnea....I need you help

Post by frtwome » Sat Dec 19, 2009 9:29 am

Hi Dori,
What I am doing today is, I have a notebook and I am writing down all the information from everyone regarding the different information on the masks & machines, so maybe I'll have a little bit of a clue when the DME man comes here. I know that the mask is going to have to be David's decision, but I still want to know about each one that he brings with him. I believe that when we get the machine & equipment that I will understand it a whole lot more than I do right now.
And yes I could certainly handle that kind of girlfriend competition. Anything jokingly coming from David would be a welcome relief.
Take Care,
Judy

DoriC wrote:The Resmed Quattro and the Resmed UltraMirageFF and the Hybrid seem to be very popular. My husband really tried but could never get the Quattro to seal but he finally does well with the UltraMirage now after lots of fiddling and learning about tips and tricks for getting a good seal. After awhile it just becomes routine but requires a mountain of patience and some sleepless nights especially for spouses with resistant husbands. I thought I was hearing things the other morning but after an unusually leaky night Mike jokingly told me that his "girlfriend wasn't very friendly last night". I can handle that kind of competition and hopefully so will you.

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DoriC
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Re: My Husband and Sleep Apnea....I need you help

Post by DoriC » Sat Dec 19, 2009 10:06 am

Judy, Make sure he's fitted on his bed, turning from side to side with the machine on, and not at our kitchen chair like our DME tried to do. Luckily I had already been warned about that here. I also kept a journal every day when we started using cpap, pressures used, mask used(and any fitting tip I tried), ramp settings,flex setting(as I gradually made adjustments),AHI, 90%, Leak Rate, bathroom breaks and hrs slept. I also gave each night a rating(Bad,OK,Good,Excellent) and my own comments based on my observations and what Mike told me, and my plan for any changes the next night. I did this for about 6months even after I got the software, it looks like a lot of writing but it just took a few seconds and gave me some security when I wanted to check back to see in my own words what I tried before and what worked and what didn't. I looked back at it recently and got teary when I saw how far we'd come. I should say that mostly every adjustment I made came from suggestions by a few of the experts here so I wasn't really going it alone and having this forum made all the difference for us. Good luck. Dori

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Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Additional Comments: 14/8.4,PS=4, UMFF, 02@2L,
"Do or Do Not-There Is No Try"-"Yoda"
"We are what we repeatedly do,so excellence
is not an act but a habit"-"Aristotle"
DEAR HUBBY BEGAN CPAP 9/2/08

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goose
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Re: My Husband and Sleep Apnea....I need you help

Post by goose » Sat Dec 19, 2009 12:49 pm

Excellent suggestions Dori!!!! I'd forgotten about the laying down for fitting and the journal!!!
That's why we're all here!!!! We all have each others back!!!!

Judy, you may want to print this entire thread and put it in your folder - there are some good suggestions and information here....(just read through it again!!!).....Go through it with a highlighter, or different colors - yellow for this, orange for that, and hot pink for something else.....And write some of the "bullet points" in your journal to reinforce it!!!!
I think there will be some folks here doing a happy dance for you later in the week!!!!!
Go David!!!!
Go Judy!!!!

Take care
cheers
goose

_________________
Humidifier: HC150 Heated Humidifier With Hose, 2 Chambers and Stand
Additional Comments: Also Use ComfortGel (s); Headrest (XL) and a PAP-Cap.
Wars arise from a failure to understand one another's humanness. Instead of summit meetings, why not have families meet for a picnic and get to know each other while the children play together?

-the Dalai Lama

frtwome
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Re: My Husband and Sleep Apnea....I need you help

Post by frtwome » Sat Dec 19, 2009 4:02 pm

Hi Dori,
Thank you telling me this, Earlier I was wondering if where the best place was, I wasn't sure if David should be laying down, sitting up. So, thanks.
And I will keep up with this every single day. Great idea. And I am so happy that everything is better for you and your hubby. It's a wonderful relief isn't it?
I also am grateful to everyone on here, I have felt so alone for such a long time, it's so nice and comforting to have so many to talk to that understand the situation. I have very high hopes that in a few months our little home here will not be so lonely and quiet anymore. Full of laughter and good times and simple togetherness. And I am waiting for that sweet smile from my David.
Thank You,
Judy
DoriC wrote:Judy, Make sure he's fitted on his bed, turning from side to side with the machine on, and not at our kitchen chair like our DME tried to do. Luckily I had already been warned about that here. I also kept a journal every day when we started using cpap, pressures used, mask used(and any fitting tip I tried), ramp settings,flex setting(as I gradually made adjustments),AHI, 90%, Leak Rate, bathroom breaks and hrs slept. I also gave each night a rating(Bad,OK,Good,Excellent) and my own comments based on my observations and what Mike told me, and my plan for any changes the next night. I did this for about 6months even after I got the software, it looks like a lot of writing but it just took a few seconds and gave me some security when I wanted to check back to see in my own words what I tried before and what worked and what didn't. I looked back at it recently and got teary when I saw how far we'd come. I should say that mostly every adjustment I made came from suggestions by a few of the experts here so I wasn't really going it alone and having this forum made all the difference for us. Good luck. Dori

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gasp
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Re: My Husband and Sleep Apnea....I need you help

Post by gasp » Sat Dec 19, 2009 5:17 pm

goose wrote:Hi frtwome - your persistence will pay off in the end!!!! You've done extremely well!!!! This whole post has reduced me to tears as it has others, but we know how important this treatment is to continued life!!!! We feel your frustration!!!

Your next challenge is going to be the mask (it's extremely simplistic to say, but a blower is a blower, is a blower -- simplistic in that a BiPAP is a more complex machine than the standard CPAP - but a bipap is more comfortable to use!!!)
I have always said that the mask is the "holy grail" of xPAP. I went through 6 before I found one that I'm happy with - I am using a ResMed Activa LT with a large/wide interface. It is a nasal mask but I don't mouth breathe.
David is going to be fighting with the mask for a time, but gently let him know that you'll find one that will be comfortable and work that it'll just take some time. The big step has been taken, but there are still a lot of little steps ahead. I wanted this treatment so badly by the time I actually got my machine I could have screamed -- took me 6 months from diagnosis to machine. But, I was soooooooooo tired of being tired, I was willing to do anything to change it.....in the 2.5 years I've been on the hose I've only had one night that I wasn't compliant and that was due to a power outage with no backup (battery). That problem has been remedied!!!!
If possible, have him join here and let us work with him in the same way we have worked with you -- we're here to help, and as you said in one of your posts, we've been down the road, and know the importance of doing this.

I was ready to tell you to up your insurance on him to the max, and as others said, get yourself a nice dress, bathing suit and cruise literature - but it doesn't sound like that is necessary at this point.
You know him and his motivations better than anyone, so we can make suggestions based on our own experiences, but it's you that has to determine the game plan because you know what may work. Humans are very frustrating animals to work with!!
It sounds like the doc is totally on board. That is EXCELLENT!!!! So many docs write a prescription and say, "Next"....not worrying about the patient. You have a good one!!!

Someone posted 2 options earlier and option number 2 is the best path -- long term!!!! For the short term, do whatever you need to do.....option number 1 will work while you guys come up to speed.
Being more complex, the BiPAP machine is much more expensive than a standard xPAP - and having a BiPAP prescribed tells me how serious his problem truly is!!!! Expense is relative. How much is your/his health worth?? In accepting a used machine, ensure that it came from a non-smoking environment!!! It is impossible to get that "dirty ashtray" odor out.

You do need to get a copy of the prescription. That is a "requirement". Start an "Apnea folder" and put everything related to it in that folder. Mine is about an inch thick at this point and even contains some of the posts here.
Also you'll want to get copies of the study. Not only the summary that the doc receives with the interpretation, but the actual PSG and titration study (6-10 pages). It won't mean a lot to you yet, but if you immerse yourself in the issue as I have and many others here, those numbers will start to mean something and make sense.
I've always felt that if I have an affliction, it's my job/duty to learn EVERYTHING about it. The doc is a "generalist". He can't know everything about everything, so that's where your study comes in. My neurologist was very supportive of patients taking control and learning. She also told me that there were "some very smart people on this forum. Smarter than me".
By law you are entitled to those copies and the docs office may charge you by the page, but it's worth the couple bucks!!!! But get that prescription - you'll need it to order any machine, humidifier, mask etc. from a reputable online vendor. cpap.com will price match any legitimate price from any competitor!!! Since they sponsor this forum, I'm kind of inclined to give them my business if for no other reason than this forum has been so important to me in my understanding of my condition.....

Well. This has gone on long enough. I could write more, but others have covered pretty much anything I'd have to say.

You have done an excellent job Judy; David should be proud and thank you for your persistence and once he's not so tired he will -- hell, make him take you out to the best restaurant in town to celebrate his "not being so tired"......Go drinking and dancing -- 53 ain't that old!!!!!!

Take care - both of you
cheers
goose
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frtwome
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Re: My Husband and Sleep Apnea....I need you help

Post by frtwome » Tue Dec 22, 2009 10:07 am

Hi,
I called the David's doctors office yesterday, they have mailed out to us the copy of his sleep study and the doctors prescription for the BiPap machine, I should receive it in tomorrows mail. I haven't received any more calls fro the DME man, he had orignally told me that he would recive the used machine in his office on Monday or Tuesday this week. And that he was going test it out to make sure that everything was okay with it, and that he would give me a call and possibly be at our house to set it up for David. But he hasn't called yet. I put in a call to him a little earlier, but no return call so far. I know that I am being very impatient with the DME but I am wanted to start trying to help David.
If I have the prescription and results of the sleep study, if I have to go and purchase this equipment myself, is it possible for me to set it up for David or does it have to be set up by DME?
Thank you
Judy
Hawthorne wrote:That sounds like a good deal for a Bipap, especially if this DME is a good one. I'm sorry you have to wait until Wednesday!

Please do consider getting a copy of your prescription though, and your sleep study as well.

It won't be long until Wednesday!

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Re: My Husband and Sleep Apnea....I need you help

Post by Julie » Tue Dec 22, 2009 10:25 am

Well he'll need to try on different masks in different sizes, so unless your DME makes house calls (mine did without having been asked) he'll likely need to go, plus it'll be another step in the direction of owning his diagnosis and not being passive about the treatment. That's important.

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DoriC
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Re: My Husband and Sleep Apnea....I need you help

Post by DoriC » Tue Dec 22, 2009 6:30 pm

Judy, I know how anxious you are to get started and hopefully if the stars are in alignment by now you'll have something set up for tomorrow or the latest Thurs. I think it may be a good idea to stay with the DME for now if just for the mask exchanges if necessary(most have a 30day exchange policy) and any hands-on assistance you might get from them if you're lucky enough to get a knowledgeable RT. Once you actually have the equipment and start asking questions here you'll be on your way. Keep us posted, you're with you.

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Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Additional Comments: 14/8.4,PS=4, UMFF, 02@2L,
"Do or Do Not-There Is No Try"-"Yoda"
"We are what we repeatedly do,so excellence
is not an act but a habit"-"Aristotle"
DEAR HUBBY BEGAN CPAP 9/2/08

frtwome
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Re: My Husband and Sleep Apnea....I need you help

Post by frtwome » Wed Dec 23, 2009 5:12 pm

Hi Dori,
Guess what, DME was here at noon today very very nice man, He talked with us both, but the best part was that he listened to what David's fears were. He didn't give in to less then what David's doctor required, except for the mask. David told him just how much that he was really against wearing the full face mask. And the DME agreed that the full face is very hard to get use to. He fitted David with a Resmed Mirage Activa. But David & the DME agreed with one another that if this mask does not work good enough to bring the apnea events down quick enough, that David will use the full face.
Right now David is sleeping with the mask & machine on. Dori, I am so use to hearing so mush noise coming from David that I have to know. The first night that your husband used it, was he unusally quiet? I have been in there to check on David every ten minutes, because it's kind of scary not hearing the sounds that I am use to. He went in there to nap at 3:30pm today, and now at 6:08pm his is still sleeping with no interuptions, I don't know what to think of this. If this is real sleep that David is getting right now, he will be thrilled. This is so exciting, but yet a little scary, no knowing for sure.
Thanks,
Judy

DoriC wrote:Judy, I know how anxious you are to get started and hopefully if the stars are in alignment by now you'll have something set up for tomorrow or the latest Thurs. I think it may be a good idea to stay with the DME for now if just for the mask exchanges if necessary(most have a 30day exchange policy) and any hands-on assistance you might get from them if you're lucky enough to get a knowledgeable RT. Once you actually have the equipment and start asking questions here you'll be on your way. Keep us posted, you're with you.