There have been some questions on my sons NIV setup, We thought the answers should go in a more public area of the PPMD Community, so here is a description of our setup.

The gray hose used is a product used industrially called Snap-Loc http://www.cedarberg.com/snaploc.htm or Lock Line http://www.modularhose.com We have the Snap-Loc on this setup. It pops together like pop beads (get the pliers, they're worth their weight in gold when beads break). It is available in ¼", ½", and ¾" inside diameter. There is a starter piece that has a threaded end and globe end, The threaded end is in standard pipe thread. we mount that to a custom built bracket that is clamped to the chair. Before it was on a flat piece of aluminum and wedged between the seat pan and frame of the wheel chair to bring the tubing up front. Some people fasten it to the head rest of the seat back, that is how we got it from our RT, mounting is all personal preference.



You don't want to breathe directly through the Snap-Loc, it's not food grade and hard to clean. A piece of food grade clear plastic tubing, found at any hardware store, with a vent fitting on 1 end through the Snap-Loc is best, it is replaceable and cheaper then new beads. A piece of wooden dowel shoved through the Snap-Loc makes it straight to better thread the food grade tubing through the beads. We use the ¾" with a ½" plastic tube inside. The Outside diameter of the ½ plastic tube is about 5/8".

Here are the Snap-Loc pliers, extra beads, the clear tubing with fitting, and the custom mount.

We mounted the LTV on the back of his chair by bolting on a piece of 1/8" x 1½" metal strap from the hardware store, and riveting the pole mount to it. That keeps it from swinging about and makes a nice neat package. We get power through a voltage reducer, they are available for about $125 to $150. It converts the chairs 25vdc to 13vdc and removes the burden of separate chargers and extra batteries. I just glued it to the bottom of the seat pan.

Vent bracket angle #1

Vent bracket angle #2

Feel free to share your setup or ask any questions you may have about our setup.

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For more information about NIV, non-invasive ventilation, go to My Page by clicking on the photo of my son at the top of this page.
Ann,

I have been trying to set up a NIV system through my Wheelchair vendor and getting nowhere. Pulmonary doc. suggested mounting Pat's bi-pap on the back of his chair. Bi-pap has a humidification chamber that has to be horizontal. Vendor says he can get us power for bi-pap but can't mount with humidification and has no clue how to position mouthpiece. Seems all families must be putting together systems on their own [at least in the Massachusetts area]. Does your son use humidification with his system? What kind of system is it? We have a Respironics bi-pap. Perhaps we need a separate system for the chair?
Thanks for all your info so far.
Claire
Forgot to say my son has a Pulmonetics LTV 800
Ann Avery said:
The point of NIV is to use the bi-pap at night and the LTV during the day. The LTV is made to mount on the back of the wc and does not use humidity. . If your vendor is no help. and the pulmonologist does not know what to order, it is time for a new vendor AND new pulmonologist. You need to fight for what you need sometimes, as I am sure you well know by now. I know one Mom in your situation that called the Pulmonetics company directly for a unit when her doctor was not on the NIV bandwagon, then made her doc write a perscription for it.. Make sure you see the video on my home page here, and CALL pulmonologists on this list who are supposed to know about dmd and NIV: http://www.pitt.edu/~finder/respdocMD.html My hubby has changed how our son's NIV is positioned several times. He would be glad to help you as he can from such a long way away.

Claire Albertson said:
Ann,

I have been trying to set up a NIV system through my Wheelchair vendor and getting nowhere. Pulmonary doc. suggested mounting Pat's bi-pap on the back of his chair. Bi-pap has a humidification chamber that has to be horizontal. Vendor says he can get us power for bi-pap but can't mount with humidification and has no clue how to position mouthpiece. Seems all families must be putting together systems on their own [at least in the Massachusetts area]. Does your son use humidification with his system? What kind of system is it? We have a Respironics bi-pap. Perhaps we need a separate system for the chair?
Thanks for all your info so far.
Claire
Claire--how are things going toward Pat's laptop vent?? Here is a technical article by my son's RT who is seen on the UW video I linked you to on My Page: http://www.rcjournal.com/contents/11.05/11.05.1457.pdf

We are looking at diurnal NIV soon. I saw a black cover for this snap-loc. Do you have any suggestions for the material to use to cover the bendy part in black material? Looks like your son's is mounted under the arm rest rather than under the seat? Thanks for feedback.

Yes, my husband mounted this sip-vent. It came installed over the shoulder and my son wanted it moved. My hubby made a little video but since it was not made public I will have to ask him for it. He is "home" so I will message him I want the link. We do not have a fabric tube covering the snaplock, but think that is a good suggestion. I did buy a wild print wide tie at the Goodwill, and opened it up to slide over the tube, but he refused to leave the house with it on.It should not be hard to sew a simple cloth tube--I will have to get hubby to make one. (he does all the sewing/mending) I might get some stretchy black material.

The video would be very handy thank you as it would save length if if didn't have to be mounted under the seat. Interesting to compare your method.  Thanks.

Ann Avery said:

Yes, my husband mounted this sip-vent. It came installed over the shoulder and my son wanted it moved. My hubby made a little video but since it was not made public I will have to ask him for it. He is "home" so I will message him I want the link. We do not have a fabric tube covering the snaplock, but think that is a good suggestion. I did buy a wild print wide tie at the Goodwill, and opened it up to slide over the tube, but he refused to leave the house with it on.It should not be hard to sew a simple cloth tube--I will have to get hubby to make one. (he does all the sewing/mending) I might get some stretchy black material.

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