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New and need help
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Florist Offline

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Post: #1
New and need help
Husband had trach put in because of damage to throat from vents. He has central sleep apnea and his oxygen level is 93-94 when he goes to sleep but drops to low 80's when he go into REM. He must have warm air moisture because he gets no air through his nose or mouth (totally blocked)

When we first came home, the medical rental company said the rehab hospital said to just set up the DeVilBliss machine and let it run. They did not tell them what pressure or anything. So the machine was set on 70.

We live in an area where home health does not have respiratory and I have had to read as much as possible to try to understand care. This machine has cause more problems than you can imagine and even now his lungs become very dry.

Anyway, I would like to know if there is a machine that works for trach patients and can dispense heat moisture measuring when to add oxygen or air when he goes into the deep sleep.
01-21-2015 09:21 AM
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Florist Offline

Members

Posts: 4
Joined: Jan 2015

Machine: unsure
Mask Type: Other
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CPAP Software: Not using software

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Sex: Male
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Post: #2
RE: New and need help
I reduced the pressure to 30 and just add oxygen tube taped onto tube when I know he falls asleep.
01-21-2015 09:57 AM
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me50 Offline

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Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

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Sex: Undisclosed
Location: USA

Post: #3
RE: New and need help
Have you called your husband's doctor? I am not experienced or qualified to answer your question. I think there are some members here that have to use oxygen but not sure any have a trach.

I think it is really important that you contact your husband's doctor and tell him/her what is going on.
01-21-2015 09:59 AM
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trish6hundred Online

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Posts: 6,452
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: New and need help
Hi Florist,
WELCOME! to the forum.!
I'm sorry you and your husband are having such a rough time with his CPAP therapy.
I'm not familiar with the situation your husband is in. Hang in there for suggestions and answers to your questions and much success to you and your husband and hopefully, you can get this straightened out.

trish6hundred
01-21-2015 03:24 PM
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PaulaO2 Offline
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Posts: 8,067
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #5
RE: New and need help
Does he use this machine so it can breathe for him (which would mean it is a ventilator) or does he only use it at night to take care of the CSA events?

For them to not properly teach you how to use it is just inexcusable. Call his doctor and demand you be taught, especially if this is a ventilator. Have them explain every little thing to you, from where the filter is and how often to change it to where the oxygen tube goes. It shouldn't be "taped" on. It should have a port. If you put it in the wrong place, oxygen could pool up in the machine and cause a fire.

As far as humidity, there should be a humidifier attachment. Our CPAPs have these.

PaulaO2
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www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-21-2015 04:32 PM
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Florist Offline

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Posts: 4
Joined: Jan 2015

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Post: #6
RE: New and need help
No This has been a nightmare. Oklahoma Heart Hospital doctors refused to take care of him when he went home as they wanted him to go to rehab and his regular doctor moved to Wichita and refused to work with home health when we got home saying we needed to go to another doctor locally. Anyway, we could not get another doctor because at the time he wasn't well enough to travel.

We did real good for 21 days but no one told us about the meds causing potassium troubles. His lungs filled with fluid and we rushed him to a local hospital saying poassium seriously low. They gave him potassium and he was like a new person other than when he laid down so we went to Wichita to Glacia Heart Hospital.

The P.A. at the hospital showed where his lung collasped explaining why he couldn't breath when he laid down. But to be on the safe side, they put in a trach which now has been a bigger nightmare.

At home he puts on weight and improves but I have him on all organic through the feeding tube because corn, soy and Canola which is what hospitals feed people shod in University Medical reports to cause lung inflammation.

I could certainly go on but what it all boils down to is that once you move out of a hospital, the doctors do not follow and you have to start all over unless you have a local doctor willing to take over.

In order for the ear, nose and throat doctor to do the trach, we had to move to Wesley and when it went in he had to go to a rehab caled Select that was suppose to train us. We told them that the doctor said not to reduce the trach but they did anyway down to a 6 andwhen his throut did not open, they sent us home. Within a few weeks of recouping from the Rehab (diareha terrible) the ear nose and throat doctor put back in the #8 trach but the rehab refused to work with home health too saying we checked ourselves out. The home health said we should call because all the paperwork did not indicate anything but that we were released. I about fell off my chair when they told me.

It probably just boils down to people figuring out how to best take care of themselves because the doctors are so overwhelmed. Goodness, people in the rehab were dieing and even 5 died in one night according to the nurse. My husband just seemed too well for them because he was eating on his own and able to walk the halls.

We did get a great heart doctor out of the ordeal and really both lung doctors were good. We also have an appointment at KU first of february and seems everyone is waiting to hear what they decide. Even we found a local doctor now to take him and he too wants to hear what is said but none seem to know anything about taking care of trach people or if they do, they don't say.
01-23-2015 08:15 AM
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Florist Offline

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Posts: 4
Joined: Jan 2015

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CPAP Software: Not using software

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Sex: Male
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Post: #7
RE: New and need help
Thank you for the help. I did find someone knowledgeable and it has been like day and night better. In fact, last night was the first night he needed no oxygen while laying down. Also, when we returned from KU, I noticed the machine had black mold in the water container. Great advise and thanks again.
02-06-2015 08:03 AM
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OpalRose Offline

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Posts: 3,181
Joined: Nov 2014

Machine: PR System One REMstar Auto 560 with A Flex
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10 For Her
Humidifier: REMStar heated humidifier with heated hose
CPAP Pressure: Auto Cpap 10-13 AFLEX 1
CPAP Software: SleepyHead EncoreBasic

Other Comments: Started CPAP Therapy October 23, 2014

Sex: Female
Location: Northeast Ohio, USA

Post: #8
RE: New and need help
Florist,
I really get angry when I hear stories like yours. Our health care system needs much improvement.
The bottom line is that you are the one that has to be proactive and demand answers otherwise you may not get the help you need. I'm glad that your husband is doing better. Be well!
:grin:

OpalRose
02-06-2015 08:33 AM
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