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.
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.
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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.
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.
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!