want to second, third, and fourth everyone on bipap and in/exsuffalator settings... The cough machine settings
for Lily are 40/40 and we started at 30/30 and it certainly didn't hurt her at all and that was at 7 months of
age. She started cough machine at 7 months.
IN/EX: Dr. Bach recommends pressure of 40 over 40. In an Ambu bag, no matter what size, the Ambu
bag delivers a pressure of 40, for all ages, so that is why it is the "gold" number to shoot
for. With a pressure of 10 over 5, there is no way that the machine will have a chance to pull anything
out. Think of it this way, when we cough, we naturally take a deep breath and cough, but kids with SMA
can't get that deep breath, hence, the weak cough. So, we need to assist them, by giving them a deep
breath and then further assist them by applying pressure to help remove the air. The In/Ex is not a
suction machine, but it will bring stuff up into the throat or mouth that can then be suctioned
out. Because MJ is 15, she will use the In/Ex and cough stuff up and clear her throat and I just have to
suction it out of her mouth.
For In/ex tubing, the easiest way to set it up is to use a section of corrugated tubing. We use a six-foot section that is attached to the machine. We then attach a filter to the end closest to MJ, followed by the mouthpiece. We often put a small piece of tubing between the mouthpiece and the filter. This way, when the filter has caught stuff, we just throw the filter away and add a new one. Rarely do we have to clean the big length.
In/ex is +40/-40 anything less than 35/35 is really not effective. I think you will see great results. Start
at 30 then bump it up to 35 within a day. Almost all of us use the 40/40. http://www.doctorbach.com/op.htm
The in/ex does not 'suction' it is more like a vacuum in that it simulates a cough. It IS their cough. As our
kids are weak, they cannot cough effectively. I would not worry about what the doctors say, ask them if they
have any other patients on the in/ex and if they have any experience with it themselves, I guarantee they will
admit NO to both. As far as the exhale, this is the most important, this will bring the junk up, the mucous
etc. Our settings are 40/40 with 2 inhale 2.5 exhale and 0 Pause (some use the 1 pause). I'm afraid the 10/5
has done nothing but blow air at her. Turn up those settings and I'm sure you will see results:) I know they
may not be crazy about the in/ex or cooperate, but continue using it, even if they are trying to fight it.
Something is better than nothing, it still works even if they try to fight it and they cry during the coughing
We started out at 15/15 with the in/ex and increased over time to get up to 40/40. I notice a big difference
with 40/40. The reason we started with 15/15 was the hospital was freaking out with the machine and didn't
want us to go higher than that, but we went up gradually over a short period. We just thought it was best for
him to get comfortable with it.
We started with 20/20 and raised it to 30/30. For deep breathing, we go up even higher on the inhale. My
suggestion is to see what it feels like on you, and if it doesn't feel like it's doing anything, it's probably
not. When you go to change her settings, do it gradually, and she probably wont' even notice the difference!
Our rep told us that the in/ex tubing should last
a long time--that it really isn't "disposable" but they call it "reusable" and said it
should last for months. The Ambu/in/ex we like has an almost green/blue colored ring around the
middle-kind of it. It says Toddler King Systems and then on the other side is a 3. I think there are
different sizes in toddler. The ones we don't like are kind of the ones that deflate. We had an awful
time finding a good one after Colin moved out of infant.
We clean our equipment every 3 days or so more if needed but I have several sets of tubing so I wash and let
dry and use one of the other sets. As far as the mask, we use one from Vital Signs.
It is one they use on the Ambu bag. The number on ours is #6830 it is called a Toddler Face Mask with
adjustable air cushion. I got our original from the hospital Ambu bag back in march 2001 and it is the
same one that I am still using today but it is
starting to get hard around the air cushion so I am going to have to open my spare I am just so afraid that I won't be able to get another one. I got my spare from the RT at the hospital. He went into the stock room and
found it (hee hee) and gave it too me.
Carl Campbell-we use an in-exsufflator, he now cooperates with it completely and when using it can cough as loud and hard as any other kid. Without it, he has only a very week cough. We use it two times every day when he is well, if he has any congestion, sinus or cough we will use it several extra times per day. I can say that Aaron has never had a cold that caused any problems and didnít clear up in the usual week or so. He has had one ear infection and was on antibiotics for that but only once. I really believe in the benefit of the in-exsufflator, Aaronís therapist thinks that it has increased his blowing ability. Our first one was a loaner. They wanted it back in two weeks but said that if Aaron got sick even slightly, they wouldnít take it back. Then he got a small cough and we kept it for about 5 weeks it took for an approval. The only way ours was approved through medicaid was when I called the medicaid ombudsmanís office. They are lawyers that fight with medicaid. Once I called them we had an approval same day. If I were you I would call whoever you are purchasing it through for an emergency trial or loaner. We went through Clarence Smith Company. The rep there is great.
My long term, big picture advice would be to ASAP demand to be given a cough machine, also known as the
In/Exsufflator made by a company called Emerson. The newer version of this machine is called a Cough
Assist. Many of us here use the BiPAP machine and the cough machine with great results.
For instance, my granddaughter is a type one, will soon be three years old and is enjoying remarkable
good health. Praise the Lord. We with the weaker kids start using these machines really young now and there is
a new generation of Type 1 children not only surviving, but thriving beyond traditional prognosis mainly
because of this practice. Over two and a half years ago, when
Kalair was first diagnosed, I went to the 2000 FSMA conference where I heard the mother of a type 2 girl
(about 8 years old) talking about what a God send the In/Ex had been for her daughter. How it helped them
soooo much when she contracted a respiratory virus and kept her from developing pneumonia and needing
hospitalization. They had been using it for so long and she had
not had a pneumonia for many years that
when they decided to take a family trip out of the country for a couple of weeks, the mom thought "oh we
don't have to haul the In/Ex for just a couple of weeks". Well sure enough, no more than they were on the
other side of the globe than the little girl caught a bad cold and they ended up in a foreign emergency room.
She said that they would never again go anywhere with out the machine.
This mother was not the only one who testified to me at that first conference about the In/Ex but her
story really impressed me. After she told her story, she and the little girl demonstrated the In/Ex for us and
it was obvious that the little girl was also aware of how important to her health this machine is.
J.H. Emerson Co. is pleased to announce the release of their new Introduction and Training CD for the CoughAssist , a noninvasive airway clearance device. This interactive disc includes complete step-by-step instructions as well as a comprehensive clinical tips section. To receive a free CD please contact the J.H. Emerson Co. by phone at 1-800-252-1414 or by E-mail at firstname.lastname@example.org
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