OT: Mike & I have Pneumonia!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
McSleepy
Posts: 454
Joined: Fri Nov 26, 2010 10:32 pm
Location: USA

Re: OT: Mike & I have Pneumonia!

Post by McSleepy » Tue Apr 15, 2014 10:42 am

Dori,
I don't know if this is relevant at this time (anymore), but as far as SmartStart is concerned, it works a little different than mentioned above, at least on my S8, but it would be easy to test this on Mike's S9. I use SmartStart all the time, only for starting the machine, but I have experimented and I know that it does NOT stop when you stop breathing; it only stops when you remove the mask (as stated in the manual) and the way it senses it is the flow being unrestricted, in other words, no resistance - all air is "leaked". This means if you set Mike's machine to SmartStart, if it is stopped, it would start, as long as he tries to breathe, and it would never stop unless the mask is removed (or the tubing is disconnected, or anything like that). You can easily test that: set the machine to SmartStart, start the blower (you could disconnect the mask and just use the hose end) and then simply plug the hose with your hand and see how it would never stop. But if you were to release the hose open, it would stop in about 3 seconds.
This would be nice insurance, to know that the machine will always be on when his mask is on. Best luck to both of you, you're in my thoughts!
McSleepy

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Previous machine: ResMed S9 VPAP Auto 25 BiLevel. Mask: Breeze with dilator pillows. Software: ResScan ver. 5.1
ResMed AirCurve 10 VAuto; Puritan-Bennett Breeze nasal pillow mask; healthy, active, middle-aged man; tall, athletic build; stomach sleeper; on CPAP since 2003; lives @ 5000 ft; surgically-corrected deviated septum and turbinates; regular nasal washes

User avatar
jencat824
Posts: 1442
Joined: Sun Oct 14, 2012 5:06 pm
Location: Jeffersonville, Indiana

Re: OT: Mike & I have Pneumonia!

Post by jencat824 » Tue Apr 15, 2014 8:56 pm

ems wrote:
DoriC wrote:From what our Dr told me today in his opinion, these "facilities" are all the same.
Dori.. unfortunately your doctor is right! Looking forward to hearing that the doctor says he is ready to go home. That will be a wonderful day for you both!
I definitely agree!!! I'm going on the 5 month mark with my MIL & she is looking at many, many more months to heal the remaining leg, if she doesn't lose it too. These "facilities" are little better than "end of life" housing & no one should be left to their mercy. Without very vocal families participating in care, people get neglected easily. My MIL overhead the CNA on her wing telling another CNA that she had 32 patients that night! That's insane! The nurses & aids both at my MIL's facility are deathly afraid of me - they all know me by name & some actually run from me.

Dori - hang in there, I'm still praying for you & Mike. I know you are doing everything possible to get him the best care.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Pressure Auto 12-20cm CPAP compliant since 2000
Other masks I've tried: *=liked, #= no way
Piliaro, SleepWeaver Elan*, Swift FX w&w/o Bella Loops#, OpitLife#,Simplicity*, Mirage Vista*, Go Life for Her#, IQ (original hg only)*, Quattro FX (barely)###, Wisp*, Nuance#, Swift LT for her**

herefishy
Posts: 1012
Joined: Sun Oct 30, 2005 8:24 am

Re: OT: Mike & I have Pneumonia!

Post by herefishy » Fri Apr 18, 2014 6:58 pm

We need an update, Dori, how are things going?

_________________
Mask: Mirage Activa™ LT Nasal CPAP Mask with Headgear
Additional Comments: pressure 10-12

User avatar
DoriC
Posts: 5215
Joined: Sat Sep 13, 2008 9:28 pm
Location: NJ

Re: OT: Mike & I have Pneumonia!

Post by DoriC » Fri Apr 18, 2014 8:35 pm

Sorry, I've been too tired to even check my mail at night. The final decision was made to take the cpap home 3 days ago and just keep him on oxygen at night since even the Resp Therapist from the hospital who was called in to help me "train" the night staff didn't have any success. I can't blame them entirely because I did spend one night there and he was just too restless and semi-awake all night even with his own pillow from home. The whole setup there just seems to upset him. So far he's had 2 good days and nights and a bad one today sleeping almost all day and awake all night so far. He is making progress with physical therapy and getting stronger so even though I'm worried about not using his cpap I'm encouraged that he'll get strong enough to come home soon and I can get him back on schedule but he's still got a long way to go and I'm going to need help at home. I hope you're all doing well, as soon as I can keep my eyes open I'll be reading all your posts.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: HumidAire H4i™ Heated Humidifier
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

User avatar
chunkyfrog
Posts: 34377
Joined: Mon Jul 12, 2010 5:10 pm
Location: Nebraska--I am sworn to keep the secret of this paradise.

Re: OT: Mike & I have Pneumonia!

Post by chunkyfrog » Fri Apr 18, 2014 10:07 pm

Here's a big hug.
Now get some rest.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her

User avatar
Kiralynx
Posts: 2403
Joined: Wed Oct 08, 2008 5:42 am

Re: OT: Mike & I have Pneumonia!

Post by Kiralynx » Fri Apr 18, 2014 11:53 pm

Just catching up, Dori (taking care of my Dad, who came out of a rehab center with two huge pressure sores on his heels).

Sending all good thoughts to you and Mike.

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Additional Comments: Sleepyhead software, not listed. Currently using Dreamstation ASV, not listed
-- Kiralynx
Beastie, 2008-10-28. NEW Beastie, PRS1 960, 2014-05-14. NEWER Beastie, Dream Station ASV, 2017-10-17. PadaCheek Hosecover. Homemade Brandy Keg Chin Support. TapPap Mask.
Min PS = 4, Max PS = 8
Epap Range = 6 - 7.5

herefishy
Posts: 1012
Joined: Sun Oct 30, 2005 8:24 am

Re: OT: Mike & I have Pneumonia!

Post by herefishy » Sat Apr 19, 2014 7:26 am

You'd think the people that we leave our loved ones to would be smart enough to figure out CPAP. Maybe it is Rocket Science.

_________________
Mask: Mirage Activa™ LT Nasal CPAP Mask with Headgear
Additional Comments: pressure 10-12

User avatar
jencat824
Posts: 1442
Joined: Sun Oct 14, 2012 5:06 pm
Location: Jeffersonville, Indiana

Re: OT: Mike & I have Pneumonia!

Post by jencat824 » Sun Apr 20, 2014 5:29 pm

Dori: I'm sending hugs & many prayers your way. Once you get him home, I know Mike will benefit from your care. Most areas have home-health type of companies that send not just nurses by 'day attendants' to help with him, (bathing, PT, etc) and many who help with housework too, so your time can be spent healing with him. Hang in there, with all the prayers coming your way, he will be home with you soon.

herefishy: I've had too much recent experience with so-called "Rehab Facilities" and I've become disillusioned with them. Example, lunch served there at 11:50 am, 2:00 pm, 'new' kitchen staff still hadn't figured out how to fix a tray & take it to my MIL to replace the one they somehow 'forgot'. I got there & was hoppin mad, so nurse manager gets involved. By the time the CNA's, nurse's & nurse manager finally 'found' her lunch in the kitchen my hubby had been to White Castle & back with her order (2:45pm). White Castle was in next small town from the Rehab! Moral of that story is ALWAYS assume your loved ones in a care facility need for you to be their best advocate, you can't be there all the time, but give the facility the impression that you are. I visit at all hours so they never know when to expect me, that way I catch problems like this one & several others too. I know Dori is Mike's advocate, but I see people there everyday who have family that think they are being adequately cared for & they are NOT. It scares me to death to leave, the staff are afraid of me because they know I will call Kindred corporate if they don't fix a problem. I guess corporate will hear from me again tomorrow am.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Pressure Auto 12-20cm CPAP compliant since 2000
Other masks I've tried: *=liked, #= no way
Piliaro, SleepWeaver Elan*, Swift FX w&w/o Bella Loops#, OpitLife#,Simplicity*, Mirage Vista*, Go Life for Her#, IQ (original hg only)*, Quattro FX (barely)###, Wisp*, Nuance#, Swift LT for her**

frapilu
Posts: 394
Joined: Thu Jun 29, 2006 5:22 pm
Location: Ottawa, Ontario, Canada

Re: OT: Mike & I have Pneumonia!

Post by frapilu » Mon Apr 21, 2014 10:31 am

Dori, I haven't been around in ages but I've just read through this thread am I'm horrified. Prayers and hugs for you and Mike. I really hope he gets to the point soon that you can get him to home care.

Hubby went through 2 knee replacements, a year apart, and I'm so grateful that he doesn't have sleep apnea since that would have been even more of an issue. I had to be a constant advocate for his care the time he was in the hospital. Good thing 2nd knee replacement was only 2 days. It has decided me that no matter how bad my knees get, I will NOT get knee replacements because I do have apnea and hubby is not the type to manage well as an advocate.

Take care of yourself! Good luck.

Hugs
France

_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Also use Sleepyhead software; also use dental appliance for teeth grinding (& sleep apnea)

User avatar
DoriC
Posts: 5215
Joined: Sat Sep 13, 2008 9:28 pm
Location: NJ

Re: OT: Mike & I have Pneumonia!

Post by DoriC » Thu Apr 24, 2014 7:23 pm

Quick update, I had to transfer Mike to another facility Monday, we just wasted 4 weeks of rehab with no cpap and no real improvement. I'm still in the early days of getting things settled but at least he's on his bipap again but I'm still doing battle with the nursing staff on how to put on a mask properly. They called in a Resp.Therapist who also owns the company where they get there supplies(they wouldn't let me bring my own machine but they did supply the one we use) and he argued with me for 15minutes that bipaps don't have Pressure Support, "only the advanced ones do that help patients breathe". I had to show him in the settings that there is a PS and he was amazed that I knew the "secret code"! He also had the Ramp set at 4cm for 45mins, "I always set them that way so "patients can adjust to the pressure"! I also just found out that the other rehab was still using the orders from the hospital for breathing treatments every 4hrs around the clock even though our Dr wrote the rehab orders for 4x daily as necessary. So they were waking him up at 4AM, taking off his mask to give him a breathing treatment and complaining to me that Mike was taking his mask off himself never mentioning the breathing treatments. Are you all screaming yet?? I'll save the rest for another day, I'm really exhausted but not giving up. The supervisors at this rehab seem to be more receptive and want to get it right so I'm trying to be patient. He did have a somewhat better night last night, kept the mask on for almost 6hrs, AHI=8.0 and some of the time under the 24 leak line. Of course I stayed there until 9PM and watched the nurse put the mask on with my instructions. I was too tired to stay there tonight so I'm hoping for the best with the night supervisor going to put the mask on himself and will be monitoring. Hope all is well with you guys!

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: HumidAire H4i™ Heated Humidifier
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

Wulfman...

Re: OT: Mike & I have Pneumonia!

Post by Wulfman... » Thu Apr 24, 2014 7:37 pm

DoriC wrote:Quick update, I had to transfer Mike to another facility Monday, we just wasted 4 weeks of rehab with no cpap and no real improvement. I'm still in the early days of getting things settled but at least he's on his bipap again but I'm still doing battle with the nursing staff on how to put on a mask properly. They called in a Resp Therapist who also owns the company where they get there supplies(they wouldn't let me bring my own machine but they did supply the one we use) and he argued with me for 15minutes that bipaps don't have Pressure Support, "only the advanced ones do that help patients breathe". I had to show him in the settings that there is a PS and he was amazed that I knew the "secret code"! He also had the Ramp set at 4cm for 45mins, "I always set them that way so "patients can adjust to the pressure"! I also just found out that the other rehab was still using the orders from the hospital for breathing treatments every 4hrs around the clock even though our Dr wrote the rehab orders for 4x daily as necessary. So they were waking him up at 4AM, taking off his mask to give him a breathing treatment and complaining to me that Mike was taking his mask off himself never mentioning the breathing treatments. Are you all screaming yet?? :evil: I'll save the rest for another day, I'm really exhausted but not giving up. The supervisors at this rehab seem to be more receptive and want to get it right so I'm trying to be patient. He did have a somewhat better night last night, kept the mask on for almost 6hrs, AHI=8.0 and some of the time under the 24 leak line. Of course I stayed there until 9PM and watched the nurse put the mask on with my instructions. I was too tired to stay there tonight so I'm hoping for the best with the night supervisor going to put the mask on himself and will be monitoring. Hope all is well with you guys!
I was screaming by the time I reached that first statement I put in bold. WOW!

Good luck, girl. Try not to wear yourself out.


Den

.

User avatar
BlackSpinner
Posts: 9745
Joined: Sat Apr 25, 2009 5:44 pm
Location: Edmonton Alberta
Contact:

Re: OT: Mike & I have Pneumonia!

Post by BlackSpinner » Thu Apr 24, 2014 8:22 pm

{{{Hugs Dori}}}

I didn't want to add to your stress but the idea that the staff was incapable of learning how to put on a mask and turn on the cpap machine begs the question on how did they get certified enough to work there?
I am glad you found another place for him, hopefully it is good enough for YOU to recover properly from your pneumonia.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear
Additional Comments: Quatro mask for colds & flus S8 elite for back up
71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal

ems
Posts: 2757
Joined: Fri Jul 29, 2011 12:46 am

Re: OT: Mike & I have Pneumonia!

Post by ems » Thu Apr 24, 2014 8:57 pm

BlackSpinner wrote:
I didn't want to add to your stress but the idea that the staff was incapable of learning how to put on a mask and turn on the cpap machine begs the question on how did they get certified enough to work there?
I am glad you found another place for him, hopefully it is good enough for YOU to recover properly from your pneumonia.

It appears that Sleep Apnea (and the use of a machine and mask) is still in its infancy and seldom recorded when one enters such a facility, much less understood - hence no need to get certified. We have to make family members aware of this until finally it's as simple as taking one's temperature.

Dori... always thinking about you and Mike and praying this turns out to be an advanced facility.
If only the folks with sawdust for brains were as sweet and obliging and innocent as The Scarecrow! ~a friend~

HoseCrusher
Posts: 2744
Joined: Tue Oct 12, 2010 6:42 pm

Re: OT: Mike & I have Pneumonia!

Post by HoseCrusher » Thu Apr 24, 2014 9:03 pm

If Saturday Night Live ran this as a skit we would all sit back and laugh knowing that there is no way it could actually happen...

In spite of all the screw ups Mike is hanging in there. You are an inspiration for all of us. If I ever end up in the hospital I want you and people like you on my side.

My thoughts and prayers are with you daily and I hope Mike comes home soon so you can give him the care he needs.

_________________
Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine is an AirSense 10 AutoSet For Her with Heated Humidifier.
SpO2 96+% and holding...

User avatar
kaiasgram
Posts: 3568
Joined: Sat Jun 02, 2012 2:08 pm
Location: Northern California

Re: OT: Mike & I have Pneumonia!

Post by kaiasgram » Thu Apr 24, 2014 9:03 pm

ems wrote:Dori... always thinking about you and Mike and praying this turns out to be an advanced facility.
I second that. Dori, thank you for your updates, Your endurance is inspirational.

_________________
Machine: AirSense 10 AutoSet with Heated Humidifer + Aifit N30i Nasal Mask Bundle
Mask: Aloha Nasal Pillow CPAP Mask with Headgear
Additional Comments: SleepyHead-now-OSCAR software on Mac OSX Ventura