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On reflection.. or is it hindsight?

Posted by permagrin on March 18, 2003 at 19:46:10:

Looking back over the posts I've made recently, I am shocked by how much of it was probably caused by the problem I encountered yesterday with the Oasis. This was a huge lesson to me about correct pressure and lack of progress. To recap, after Mike had had great compliance with his mask, and taping his mouth, he still hadn't improved nearly as much as it seemed he should have. I became suspicious of his delivered pressure and I can't say why I was except it was some sort of instinct, which so far has served me well. (That must be God's special gift to Mike and me as we trudge along on this journey.) I made a special plea to this forum for instructions for determining whether the pressure coming from the CPAP machine was actually what it was supposed to be, and several good souls jumped in to give me great ideas for checking it out. It turned out that the Oasis had a bad gasket that leaked that was preventing the pressure from arriving in the mask! With my very crude method of measurement, it seems it was only delivering approximately half of the flow it should have been. This goes a long way toward explaining a lot of the strange things I have posted about. In particular, if the mask was only delivering half the flow, then in the FF Spectrum mask, he may very well have been failing to clear the CO2, and that would explain his craziness the other night. His failure to improve, and his mood swings recently are surely connected to his inability to get the therapy he desperately needs. Because he has had these issues with exhaling, I am bringing his pressure up gradually, and today, with less pressure than he actually needed last night (at this point, he might as well take his time getting up to his prescribed pressure) but more than he had been getting, I am seeing some signs of the 'old' Mike returning. As I write, he is still out in the garage sorting tools in his toolbox. He's been out there most of the day, and although he needs to be in an office chair with wheels in order to get around, he has also climbed down onto the floor and sat there sorting stuff as well, and then gotten himself back up into the chair, all without my assistance. This represents a real milestone for him in that it is the first day in thirteen and a half months that he has wanted to be out of my sight, or more importantly, earshot. It is the first time in that long that he has not simply sat on the couch watching TV for want of energy to do anything else (on his own). It is the first sign of independence I have seen in so long that I am completely overjoyed, although convincing him of that has been difficult. How do you tell a guy you're thrilled that he is away from you and doing what HE wants to do for a change? I don't want him to think I am glad to be rid of him. I am just so happy that he feels he can handle himself, that he has the confidence and apparent energy to do these things without relying on me. It must feel so good for him!

So herewith are the lessons learned: When symptoms don’t seem to be improving, check, check, and check again. It may not be any one thing, or the thing you suspect that is not working properly, so keep looking. Check everything: the machine itself (which, according to a DME I spoke with today should be checked annually with a manometer), the hoses that can crack and leak so check them under some kind of pressure (I just held one end and blew through the other end), the mask itself, and the humidifier. Don’t just inspect them, check everything under pressure. When I ran a test through the humidifier, the pressure didn’t seem right, so make sure when you test, that you test the setup exactly the way you use it. It doesn’t make any difference what the machine tells you it’s sending; what matters is the **delivered** pressure at your end, and that means through all the devices you may have in line before you actually breathe the air!

My heartfelt thanks again to all who responded yesterday to help me sort out the problem. You have no idea how very much you are all appreciated! :)

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