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Permalink Reply by Karen Barnett on January 11, 2010 at 1:45pm

My son is starting this at night also. PFT's are normal as well. He has high CO2 at night Just waiting on the it now from the DME supplier. I'll let you know what we go with. How old is your son Cheri?

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Permalink Reply by Cheri Gunvalson on January 11, 2010 at 1:58pm

Jacob is 18....the nose pillows dry out his nose even with a humidifier...and he just can't find a comfortable mask so please let me know what works for you.

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Permalink Reply by Ann Avery on January 11, 2010 at 10:11pm

My son has tried many masks, which your vendor RT will bring when they come to set up. Your son should be able to pick 2 or 3 to try. My son loves his nose mask "Mirage Vista" by Res-med. Unfortunately I hear they are going to discontinue it, so hopefully the replacement will be just as comfortable. My son usually starts the night with nasal pillows and switches to Mirage about 3 a.m. Your vendor RT is the person to ask about any bi-pap supplies. Ask him/her how many you will be allowed. Medicaid is very generous. Also ask about bi- versus v-pap. Actually it is better to ask your pulmonologist. It is also good to find out what your pulmonologist thinks of non-invasive ventilation. Here is a video link for that: http://www.uwtv.org/programs/displayevent.aspx?rID=4123
Karen, the bi- or volume pap will help exchange of gases so your son doesn't build up to a dangerous CO2 level. Too many of our guys have also been given straight oxygen, and as they cannot breathe out well after a certain age(different for each) their CO2 levels rise. High CO2 signals the brain not to breathe.
We are just getting our second v-pap, as my son is 29. He uses a "sip vent" during the day. Bless whoever invented these machines!

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Permalink Reply by Cheri Gunvalson on January 12, 2010 at 7:41am

We have tried a few...his nose gets dried out (even with the humidifier on) with the nose one and the mask is not comfortable with th mask...whats the difference between bi pap and vi pap?

Ann Avery said:

My son has tried many masks, which your vendor RT will bring when they come to set up. Your son should be able to pick 2 or 3 to try. My son loves his nose mask "Mirage Vista" by Res-med. Unfortunately I hear they are going to discontinue it, so hopefully the replacement will be just as comfortable. My son usually starts the night with nasal pillows and switches to Mirage about 3 a.m. Your vendor RT is the person to ask about any bi-pap supplies. Ask him/her how many you will be allowed. Medicaid is very generous. Also ask about bi- versus v-pap. Actually it is better to ask your pulmonologist. It is also good to find out what your pulmonologist thinks of non-invasive ventilation. Here is a video link for that: http://www.uwtv.org/programs/displayevent.aspx?rID=4123
Karen, the bi- or volume pap will help exchange of gases so your son doesn't build up to a dangerous CO2 level. Too many of our guys have also been given straight oxygen, and as they cannot breathe out well after a certain age(different for each) their CO2 levels rise. High CO2 signals the brain not to breathe.
We are just getting our second v-pap, as my son is 29. He uses a "sip vent" during the day. Bless whoever invented these machines!

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Permalink Reply by Ann Avery on January 12, 2010 at 12:23pm

Here is a link to a volume vent explanation:

http://www.mdaquest-digital.com/mdaquest/20070910/?pg=42>;

Have you tried saline spray or vaseline for dry nose lining? Do you have the older machine with separate humidifier canister, or the new one with built-in humidifier? We are in the process of getting the newer one but will be concerned if it dries out his nasal passages more than our older model.

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