BiPAP

Amy Barnett- I want to second, third, and fourth everyone on bipap and inexsufflator settings...Lily's bipap settings are IPAP of 20 and EPAP of 2... She started bipap at 6 months. We have those same heated humidifiers for bipap (I have 2..one for here and a back up)....as far as the settings...it is different for different days.  When it is moist here, rainy and such I have to turn my settings down to avoid water in the tubing, and when it is dry here (like NOW.. especially with winter, heat, etc.) I have to turn it up quite high.  As far as tubing goes, you can use the same tubing you use for the bipap.  We did the no humidifier thing for a while and Lily got REALLY dried out from that, now I can keep good moist air going through the bipap..... I usually wash mine everyday because it gets so crusty and yucky then I wash the mask about every 3 days as well and I change the headgear as needed (if she is really blowing out the secretions every night but if she doesn't get it wet every other day).  The tubing I clean every 3 days or so BUT right now since she is dealing with a cold I am washing it everyday (or changing it out and putting fresh tubing on it) and of course the humidifier I wash everyday too.

I get my Lanolin at WalMart in the nursing mothers section.  It is great and I keep Lily's face slathered in it at night too.  In addition, another trick that I do is to get the DuoDerm stuff (the expensive stuff) and put it on her spacer that goes on her forehead and that keeps the marks off from that too.  I have been really very blessed with the bipap "bites" because Lily really doesn't get them much at all but when she does it seems to be right on the corner of her nose...not sure how the mask contributes to that since it doesn’t touch that part at all but somehow she gets the red nose stuff going on.

Brenda- Regarding the BiPAP:  yes, the epap pressure should be as low as possible otherwise, it makes it harder to exhale...that is why CPAP machines don't work well with SMA kids.  The mouth opening is very common too.  MJ's lip is sucked into the mask, but sometimes, MJ puts her lip inside because she likes it there now.  You will get more mucus/drooling while on the BiPAP because the air pressure will tend to "blow" stuff out easier.

Kenya- Make sure it is not a c-pap, because all that does, is blow air in continuously and that is not what he needs. It will make his breathing harder. He needs the BI-pap. The kind I have is the st/d and it is wonderful.

Dr. Bach’s site- EPAP should only be a minimum of 2 or 3, and IPAP should be at least 14-15 up to 20. http://www.doctorbach.com/op.htm

Nadine-The difference in the number of IPAP and EPAP is the actual span. 13 is a good span. It will help her to keep open and take those deep breaths.

When Jarred is sick we will turn up the IPAP. Right now, he is happy on 18/3. In the beginning, we had to turn it up slowly so he would tolerate it. Bipap helps to give the kids a break and help with chest expansion. IPAP is the inspiratory pressure, breathing in, EPAP is the expiratory pressure, going out. Our kids have a problem with co2 buildup and not apnea or o2 problems. CPAP works for people with sleep apnea.

Sallie-Don't be afraid to start making sure that the mask is adjusted as comfortably as possible. Dr.s and RTs often are not experts at fitting a mask comfortably and may put them on in a way that digs into the face at
some point.  A big tip is that it is a whole lot easier to fit a mask comfortably with a cap rather than a strap. Respironics makes a stretchy cap. Ask for a couple to go home with. The small child's Respironics mask with the comfort flap is what many of our children first used. The comfort flap is important for the seal as well comfort. Some doctors and RTs have the attitude that BiPAP is just going to tear up their face and that is the nature of the beast. It is up to the mommy's and daddy's to not accept that and to fiddle with the mask and cap until you can get it as comfortable as possible. It will get easier with practice. With no respiratory problems, it will be easier because you don't have to fight with the hospital to use the best settings. They often don't. However, it will be easier for him to adjust to the BiPAP if they are reasonable settings. Many doctors (among those who even recognize these methods of management) only recommend nightly BiPAP for the Type 1 children and BiPAP for Type 2s only when sick. However, there are many families who have seen remarkable results from putting their child on nocturnal BiPAP when they are not sick. If nothing else, then the child is used to it when they really need it, but many families believe that it affords their child a better quality of sleep and they are more rested and stronger because of it.  Everyone that I know who uses the BiPAP at night will automatically keep the child on it as much as possible when they are sick. In addition, they believe that it keeps them from getting as sick and helps them get well faster.

They all get “BiPAP bites” now and then. The product that we use is called Hydrous Lanolin and the brand we use is Fougera. We get it at our Target. It comes in a tube. We find it on a display right by the Pharmacy.  Ask at a Pharmacy.  It is used for nursing mother's nipples. But, when Liz was nursing, I found that many places are using a much coarser product that does not work as well. The hydrous lanolin should be a creamy white color. Not tan or brown. Back when I was nursing, I got a high quality directly from a pharmacy and it came in a little tub. We put a thick dollop on first thing in the morning and keep it thick throughout the day (usually have to replace after using the In/Ex). At night before putting her to bed, I think Liz wipes it off and replaces it with some antibiotic ointment and a little piece of cotton flannel. The Lanolin is too sticky to use with the mask. Then we do the same thing every day until it is healed.  It seems to be the best thing we have tried to get her healed up quickly with minimal scarring.  We have found that you have to be careful on the face about using Band-Aids because they sometimes cause a sore of their own when you take the sticky part off. We kind of play it by ear according to where it is. We sort of treat these BiPAP bites like burns. The burn experts tell you not to let a burn get dried out because it will crack around the edges and cause more scarring. (also more likely to get infected)

Jeni-Annah has had her BI-pap for 2 1/2 years and we got it during a MAJOR illness. I had been asking for it for over a year, but was told no because she didn't de-sat at night. Annah HATED it at first, for about an hour she asked to take it off, but after that she realized how much easier it was for her to breath and wouldn't let me take it off. Now her BI-pap is like my white noise machine. When she's at my Mom's house I have a hard time sleeping because it's not on!!! It's been a wonderful addition to our arsenal of tools to fight with, and I'd bite the first hand that reached in to take it! As for the masks -- ask for the gel mask that you mold to shape the face. That has been the only one that didn't bite Annah instantly. She has very sensitive skin, and even tape causes a bite within hours. I know it's rough to see them fight something like that, but remember that you are Mom, and MOM knows best!!! I make my kids cry all the time over less important things (candy before dinner, playing at quiet time etc.) so I won't feel guilty over something as important as that!!!

Sue- We clean our tubing about 3 times a week and PRN.  Sometimes Colin has so many goobers in the morning that it gets into the mask, adapter, and tubing!  Then we always clean it.  We rotate our masks, and tubing. Yes, yes, yes, use the humidifier!!!  I don't like Colin to go too long without his.  When we travel in the car, he's on bipap without the humidifier, but i don't like him to go more than two hours.  I know that they can be a pain...one more thing to clean and tip over and carry around, but I'll bet it will help.  In my brain, I think of the little alveoli all dried up without it!! We usually keep our humidifier at about 3.  I haven't had too much trouble with rain out but I know some people do.  The short tubing goes from the bipap to the port on the "outer" side.  (It's the one that is half blocked, usually)  The long tubing goes from the middle port of the chamber to the child.  If you look closer there are arrows on the chamber that tell you which way things go...but I can never figure out what they mean!  Oh yeah, use the distilled water.  Don't overfill.  Make sure you clean it several times a week, tubing, too.  Last week I noticed Colin was breathing somewhat funny on the bipap...he has been so good with it.  This was the S/T that was loaned to us from the DME for supposedly a week.  They have let us keep it.  Anyway, I never got a book, or filters, or any instructions--it's very different from our other one.  All of a sudden I thought, hmm, how often should we change the filter???  Our other one lasts for 6 months with blowing it out, but I usually let it go 3.  I opened up the front where the filter is and, OH  MY
GOD, black, thick, cruddy dirt!!!  This is the bipap that stays up in our bedroom or his crib room and never goes outside!  I do not think I ever wrote it on Colin's medical journal.  I will have to check back.  Anyway, it has supposed to be changed monthly.  Gene went to the supply company and got some.  They did tell us we could run it without the paper filter (it has a cushy foam one) but we wanted to have him use both.  Anyway, he has been working and doing better now that the new filter is in.  I shudder to think of him having to breathe thru that crap!

We use bag balm, especially with Casey.  He tends to get a little break down on one of his ears (he has a favorite side to lay on).  We slather that on at night and it's been working well.  It's a little greasy but we like it!

Kristal- We use 2 spacers and a baby washcloth with carmex on it. Brett hardly ever gets “Bi-pap bites” anymore.

Corby- I actually got this from someone at the bipap manufacturing co. at the bach conf. in San Diego. If you take a receiving blanket and rap it around the tube nice and snug, then tape it; no more condensation will build up. We use two to cover the whole tube. There will be no more "rain" build up as they call it. We used to wake up and empty his tubing out twice a night. Now there is no more build up at all. In addition, it keeps the humidification warmer. With the heater that goes with our bipap, it doesn't turn up high enough, so by the time the air got to him it was a few degrees lower then what he should get. Try it, it works great. Also thanks for the tip on the bipap height thing. Ruthie and I were kinda upset after it was posted. We never even thought about it
tipping over. That would have been a total disaster!!!!!!!

Wanda- On the care of the bipap, ever since Samantha got the staph infection last year and I was told it could have been from her equipment not being cleaned enough I have been a cleaning fanatic.  I change out the paper filter every week sooner if needed and then the bacterial filter once every two weeks.  I change out the hoses every 3 days and the humidifier I clean daily.  The mask I wipe out after each use and the head gear I clean as needed.

Tracy- Comfort flaps go over the nosepiece to avoid air leakage. Depending on what kind of mask you have, some have built in ones and others have to be ordered.

Monica English- IPPV is what is achieved with Bipap.  Just make sure that the settings are right for a child with SMA.  Usually they start somewhere around 2/10 and work up to about 2/18.  If the child is sick they would want to start much higher than 2/10 but if they're well I think it's good to get them started gradually.

Krystal (Ryan’s Grandma)- The one thing I forgot to say about the night feedings, Ryan has had problems 3 or 4 times so far with vomiting during the night.  It is air from the BI-pap, usually causing the problem. It is possible to vent them if one wants to stay up at night or get up every hour or so to check the tummy for air.  We are not very good about that.  Nevertheless, usually it is not a problem.  The thing is, you never know.  He can sleep fine with BI-pap and the tube for 30 nights, then suddenly there is a venting problem...his tummy fills with air about 1/2 way through the night and he vomits all over everything.

Care of the equipment:
Everyone, check your bipap/vent filters!  Most of you probably do, regularly, but you know how it goes sometimes! 

Last week I noticed Colin was breathing somewhat funny on the bipap...he has been so good with it.  This was the S/T that was loaned to us from the DME for supposedly a week.  They have let us keep it.  Anyway, I never got a book, or filters, or any instructions--it's very different from our other one.  All of a sudden I thought, hmm, how often should we change the
filter???  Our other one lasts for 6 months with blowing it out, but I usually let it go 3.  I opened up the front where the filter is and, OH  MY GOD, black, thick, cruddy dirt!!!  This is the bipap that stays up in our
bedroom or his crib room and never goes outside!  I don't even know if it was fresh when they gave it to me, but ugh!  I can't even remember how long we've had it now, maybe 2 months??  I do not think I ever wrote it on Colin's medical journal.  I will have to check back.  Anyway, it has supposed to be changed monthly.  Gene went to the supply company and got some.  They did tell us we could run it without the paper filter (it has a cushy foam one) but we wanted to have him use both.  Anyway, he has been working and doing better now that the new filter is in.  I shudder to think of him having to breathe thru that crap!
Ugh!
So go double check your filters!!
Sue

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