Friday, February 26, 2010

Umm…what are those big tubes?

Is a question I have received from several people after posting pictures of Gavin sitting in his little chair doing his breathing treatments.


So here it goes, I am going to attempt to explain how this machine works & what it does. Do not expect any exciting medical terms, just expect some “Jen-isms”

These are all the pieces needed to perform Gavin’s two 1/2 hour breathing treatments we perform daily.


  • Nebulizer machine: that little noisy machine that runs his inhaled medications
  • Bubbles: his nebulizer contraption that contains his medications and is as kid like as possible, trying to make things as “fun” as possible
  • The Big White Thing: the machine that helps us run the desired programs for his treatment sessions & controls the air intake/vibrations the vest performs
  • Big Tube Things: these tubes connect to the “Big White Thing” & to his Vest, and blow air into the Vest making it vibrate/shake
  • The Vest: Inflates with air and vibrates at such a rate that it shakes the sticky mucus (a result of CF) free so he can breathe more easily
  • That Gray Wire: What powers up the “Big White Thing” and what Gavin consistently tries to unplug & plug in & unplug & plug in…

So every morning and evening, we unpack the handy dandy bag that was provided to us by Hill-Rom (remember this?), and get set up for his treatments. Often I give Gavin “that gray wire” and watch him attempt to plug it into the back of the machine (not an outlet!) while I prepare his Bubbles nebulizer. Can never start teaching him how to do his own treatments too early right?!?! :)

What goes into the nebulizer you ask? Well, it’s a combination of two medications.

  1. Albuterol
  2. Mucomyst (which we lovingly call the sh*tty smelling stuff)

The Albuterol comes in a box filled with individual vials, this part is s.i.m.p.l.e. Twist off the top and dump it into the neb container (Bubbles).


The Mucomyst is a bit different. We get it in 4 mL vials and use 2 mLs of it each session.


Out comes the handy dandy syringe…


where I carefully measure out the amount needed (2 mL)


And add it to the 3 mLs of Albuterol.


**Side note…do NOT spill this or let Gavin dump it out on the floor. It will make your living room stink for a day or two…or more…not that I would know this from personal experience… :)

Now we’re ready to go. At this point I have to balance the nebs so they don’t tip over and spill…

nebs nebs 2

Get Gavin snapped into his Vest…

Attach the hoses to their designated spots on the Vest (this would never result in me swearing when I can’t get them to connect)


And then remember that I forgot to crack open the patio door & start up the ceiling fan to try to prevent the smell of the Mucomyst from sticking around.

Now, (again, I would never swear in this circumstance), I have to put Gavin down, cross my fingers that he doesn’t try to run away while everything is connected correctly, grab the nebs so they don’t get spilled (or dumped), run & open the door, start the fan and sit back down to get ready to go.

At this point, I never realize that the tv remote is on the other side of the room. Again, no swearing occurs…


Ok, ok, ok so those events don’t happen every time but they do happen often enough that I get really mad at myself for not remembering to correct my previous mistakes!

Now we’re settled…everything is connected, the door is cracked open, the ceiling fan is whirring away, the tv is in my hand…I start the machines…


Wait a minute…NORMAL or OPTIONS? Umm, I’ll take the ‘Normal’ life for $500, Alex.

You know that made you laugh. Ok, moving on… :)

We start the machine


The vibrating begins

We turn on this

Jacks or this…

yo gabba Thank goodness for Cable On Demand…my lifesaver.

And then…we sit and hang out for a half hour. The Vest shakes at different Hz levels and intensities for six, five minute intervals (each interval is a different Hz level) for a total of 30 minutes each treatment session. CF results in the build up of sticky mucus that lines the lungs, along with other important organs, and the purpose of the vest is to shake the sticky mucus free. This tries to prevent bacteria from sticking around (resulting in infections) and allows him to breathe more freely.

Sometimes it puts him to sleep, more often it doesn’t. But each and every time I find myself surprised that my extremely active one year old calmly sits for a half hour and patiently watches his favorite television shows.

**Side note: the people that created Yo Gabba Gabba had to have been on something. Seriously.

Sometimes he’s even calm enough to sit in his own chair by himself.


But more often he’s not…


It really isn’t a difficult process. In fact, it’s easy compared to the manual CPTs we used to perform. Not that performing CPTs is a difficult task…but try to convince a baby/toddler to remain still and allow you to pound away on their chest for 15-20 minutes…? Right after they had to sit still during a 20 minute nebulizer breathing treatment…? Right.

In other words…WE.LOVE.THE.VEST!!!!

Any questions? :)

p.s. Today is pretty much the greatest day ever. It’s my birthday!

p.p.s. I changed the setting on my blog, so even if you’re not a “blogger” you can still comment, just choose “anonymous” from the pull down list & don’t forget to mention your name so I know who is commenting!


  1. Thank you for sharing this, Jen. Gave me a nice glimpse into the life of a very hard-working Mommy, and very brave (and incredibly patient for his age) little man!

  2. Jen - you and your family are rock stars. I did not understand the "vest" or treatment until today. Your little man is the best!

  3. Very nice explanation..Everything looks oh so familiar with the exception of the mucomyst. I am glad we don't have to use the shitty smelling stuff. lol

  4. I'm so glad that they give vests to toddlers now. They used to be only for older kids. But I bet its so much easier than pounding on him!

  5. Wow thanks for sharing Jen. I was curious how that worked. Amazing that he sits for that long. Such a good boy!

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  7. Lol, that's pretty funny. Great way to describe the daily "process" ... with pictures too! Our vest is from Electromed, and it only has one hose connected to the "big white machine". My son has always seemed to sit still during treatments as well. But then again, we start them early don't we? ;)

  8. Thanks for sharing, Jen. I had to laugh when Gavin was making the funny noise. Kids love to do that even when they are bounced on a knee. Hang in there, my friend. You and hubby are doing great with Gavin and will continue to keep you all in my prayers. Happy Birthday, as well, even though a day late! Just 2 weeks after mine!:0)

  9. You're an a.m.a.z.i.n.g mother! One of the many reason's I love blogging is being able to see what other parents go through and the challenges they face. Thanks for posting this, it opened my eyes to this disease.

    You're son's precious!

  10. Hi
    Your family is beautiful and inspiring! I have been a respiratory Therapist for 27 yrs. I work at UCSD Medical Center in San Diego. Early in my carreer I worked with children with CF. I loved going to CF camp and providing therapy by hand to the kids in the cabins. I have wathed these kids become adults, marry and even have their own children!
    I am wondering if you have been informed about DNAse(Pulmozyme) If is a better med than Mucomyst(and not stinky)for treating the sticky secretions (although it only works on infected secretions) So if Gavin does not have infected sputum it may not be indicated) we have not used Mucomyst for 20+ yrs at our hospital. Hypertonic Saline is also a newer therapy to help aid in secretion clearance. I am guessing you have already seen these recommendation on the CF foundation site. Love your photos and thanks for sharing your life with us!