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Archive for December 2015

Merry Christmas!

Friday, December 25, 2015

Merry Christmas from our family to yours!

As I prepare for bed this Christmas eve, I can't help but reflect on this advent season and feel thankful for all of the blessings I have been given.  

As I brush my teeth in the bathroom and reflect, I find myself fully aware that there are things I can't even be possibly thankful for, for there are some things I don't even realize in this moment that I have been given.  

(pictures taken by our dear friend Khimberly Caton, Snaptastic Shots Photography)

But one thing I do find myself acutely aware of, tonight, is that this holiday has been one in which we have not had to worry about Bennett's health.  This Christmas eve, treatments were given and medicines were dispersed, as always.  But that's all we had to think about in regards to Cystic Fibrosis.

Tonight, Bennett fell into a slumber, full of joy over Santa's midnight arrival and of great anticipation that he would wake to find his favorite toys laid out for him in a corner of the living room. Bennett went to sleep thinking about magical non-important things, the way I think all children should. 



Not having to worry about Cystic Fibrosis this Christmas season has brought with it a greater awareness of the significance and blessing peace can bring.  CF can be such a disruptor in our family's life.  So, the absence of it's disruption feels incredibly peaceful.

As turn off my light and lay my head to the pillow, I rejoice in this small gift of Peace - for Peace is what Christmas is about.  Peace is a body working as it should, a child who is able to focus on joy and a mother and father who can rest knowing that worry can be felt on another day.

Peace is making the world right. 

"Glory to God in the highest, and on earth peace, good will towards men." Luke 2:14

Goodnight and Merry Christmas,

Visit with Santa 2015

Wednesday, December 23, 2015

Yesterday, we were able to get pictures of the kids with Santa.  We love visiting Santa at Bass Pro Shop (always such a pleasant experience).  We visit him there ever year, no matter what state we are in for the holidays.

Here's a picture of our latest Santa visit as well as pictures from our visit to Santa over the last 6 years (the one thing I notice across these pictures is how long my children's legs are getting - ha!):

2015 - The year we finally got smiles from all three kiddos!


2014 - The year when Avonlea wanted none of it!



2013 - The year when Avonlea didn't know what was happening.


2012 - The year I somehow didn't get a very clear picture closeup picture with Santa but still captured the moment anyway.

2011 - The year Bennett was just about to go in to surgery right before Christmas so we had to visit the mall Santa instead (no clue why the boys look like they are sunburned, thanks Mall Santa).



2010 - The year Bennett wanted out of this old man's lap now!


2009 - The first year the Gamel children began visiting Santa Claus.

Making life with CF easier, Part 2: the eRapid

Thursday, December 17, 2015

Edit: I heard a lot of excitement from families in our CF community who are highly interested in the Afflovest but have been hesitant.  I decided to go back to the blogpost and write my personal thoughts on this particular issue.  Feel free to read if you're interested.  I hope it will help others trying to figure out the right decision for their family.)

In the last blog post, I shared about how Bennett is now using an AffloVest, a new portable vest technology that helps Bennett treat his CF while also living more life (aka not having to be "plugged" in to the wall twice daily).  In this blog post, I wanted to share about a new portable compressor we have been using called an eRapid.  

Most all CF patients must inhale medications through a machine called a compressor.  (Many asthmatics also use a compressor.)  A compressor is a machine that aerates inhaled medications.  

Most standard air compressors work like our plug-in Pari Vios: they have a motor and forces air through a plastic tube connected to a nebulizer cup filled with the liquid medication.  The compressor works to turn the liquid medication into a mist in which the patient can inhale deep in to their lungs.  Many pediatric CF patients use a mask to breathe in this medication through their nose and mouth.  Adult CF patients typically prefer using a mouth piece so they can take deeper breathes of the inhaled medication and move away the nebulizer cup from their mouths when they cough.

While these air compressors are great, they often take a long time to aerate the medications - often 10-15 minutes per med.  If you have 3 meds to take twice daily, that's potentially over 1.5 hours a day inhaling medication.

Thankfully, in the last few years, more and more companies have started coming out with a new electronic compressors that work differently than just forcing air through a plastic tube to the nebulizer cup.  
One of these new compressor is called the Pari eRapid.  It an electronic portable compressor (much like the Trio and Altera) that uses electricity and a mesh that acts as a micropump to create the aerosol. 


The eRapid is just that - it is SO fast!  This baby can dispense meds in less than 2 minutes!  That saves us SO much time!  In addition, we love that the eRapid is portable.  It runs on batteries so it can be done in the car, while walking around or out in the woods.  It's SO nice (even though we have still tended to sit in the same place on the couch to do his meds - old habits are hard to change)!



So, here's how the eRapid works:  First, you must put all of your pieces together (which can first feel a little daunting but turns out to be pretty easy).  The parts include (starting clockwise from the top piece): the medicine reservoir, the mouth piece, the aerosal head, the medication cap and the inhalation valve.  



Secondly, after putting those pieces together, you hook it up to the eBase.  See the plug prongs in the top of the picture above?  You just slip the eBase plug onto those prongs to create an electrical current.

Thirdly, you place the medication in the nebulizer cup (see the eRapid telling me to remember to do so?) and turn on.  The medicine will begin to aerating immediately.  The eRapid should run for only the amount of time necessary to aerate the medicine (there is often residue medicine in the bottom of the nebulizer cup but it's because the eRapid uses only what is necessary, no more).  

To clean, directions suggest that taking apart the nebulizer cup pieces and soaking them in dish soap for 5 minutes.  Then they must be rinsed and sterilized.  Again, I was first intimidated by this process but I realized it's not much different than the way we typically do it.


One very common problem we have had with our eRapid and have heard others have had as well is that the eBase "medicine-done" sensor works only 50% of the time. 

The eRapid aerates the medication for the lungs quickly and efficiently.  This part is always working correctly.  

But, after the medication is appropriately aerated, it is supposed to provide a signal via the eBase that it is done. The problem is that the eBase doesn't always signal that it's done when it's done.  Instead the base stays on but the mist stops flowing.  

When I called Pari about this, I was told this was a typical problem they know about and that the "work around" is to simply turn off the machine when the mist stops.  

I would hope that Pari would be trying to improve this feature of their product but the man who answered the phone said he didn't know if that was happening.

After thinking more about this problem, I realized that our air compressor works similarly - we turn it off when we hear/see the mist has stopped flowing.  There is no indicator.  So, while I wish Pari would just take off the eBase notification (since they know is doesn't work), it isn't much different than what we already do - listen/watch and turn off when the medication is done.

Despite this known issue, we still like the eRapid.  It is smaller, quieter and more portable than our air compressor, which is wonderful - especially when traveling.

It's worth noting that the eRapid is expensive and can't be purchased without first qualifying as using an eligible medication.  Since Bennett is on Pulmozyme daily, we qualified for it and were able to get insurance coverage.  We are thankful to IV Solutions of Lubbock for all of their help to get the eRapid's approval.  But I am hopeful that as new technology becomes available and as patients ask for things that improve their quality of life, items like the eRapid and Afflovest will become more easily available to everyone.





Making life with CF easier, Part 1: the Afflovest

Friday, December 11, 2015

When you're dealing with a chronic disease, receiving new medical equipment that will make your life easier feels a bit like Christmas.

There are two new relatively items on the market that Bennett was able to be approved to access through insurance that we believe will improve the amount of time we spend on treating cystic fibrosis and how we go about it.  The first item is an AffloVest.  The second item is an eRapid.

I'll share about the eRapid in the next blog post.  But I wanted to first share about our new AffloVest and how it's going to improve the way we care for Bennett:

Bennett wears his AffloVest at school for the first time.
Cystic Fibrosis causes thick mucus to build up in the lungs.  Therefore, it's imperative for those with Cystic Fibrosis to regularly participate in some type of percussion therapy.

When babies are born with CF, they must be pounded on in order to help move the mucus in their lungs.  The difficult part of hand percussion therapy is that it can be overwhelming to have to "beat" on your child's body multiple times a day.  Your arms get tired.  And as babies begin to crawl, they don't want to have to lay down and let you beat on them.

When Bennett was 10 months old, he was able to get The Vest, a machine that blows up with air to move the mucus around.  This is a fantastic invention, for which I am forever thankful for.  It has allowed Bennett to do his percussion therapy independently while watching TV or playing the ipad.  The issue that we run in to with the Hill-Rom Vest is that it has to be plugged in.  And, although the Vest itself is just a bladder filled with air that vibrates with hoses connected to a machine, the machine weighs about 30 lbs and can be very bulky to move.  We have had to buy living room furniture specifically to keep and hide this machine.

But, not too long ago, we learned about a new company who has created a portable vest that runs on batteries.  This vest, called the AffloVest, allows Bennett to do his vest without having to be plugged in to a wall.  The AffloVest is smaller (about 5 lbs) and is easier to carry when traveling.

This morning, a medical equipment company representative, met me at Bennett's school to demonstrate how the AffloVest works and to make sure it fit correctly.

Since it was Bennett's first time on the AffloVest, we didn't pull it up very tight on him.  Ultimately, once we use it for real, it will sit more snug across his chest (there shouldn't be more than 5" opening across the chest).  Bennett was doing his vest in this picture but you would never know because it moves softly and is very quiet.



The AffloVest works so simply that it's easy for Bennett can do himself.  Easy for a kid to run means easy for a babysitter to learn and run as well, which is something CF moms have to think about!


The way that the AffloVest works is that it is kinda like a giant massage chair in a vest.  Bennett's CF doctor wrote the prescription for the "standard" therapy so there are three methods of vibrating:

The first vibration (called P3) causes the upper body with a regular percussion rhythm.  The second vibration (called P2) provides deep oscillation of the thoracic activity.  The third vibration (called P1) activates individual zones in the vest in succession with the oscillation traveling up and down the thoracic cavity.  Each vibration stage lasts about 8 minutes.  So an entire percussion treatment on the Vest is 24 minutes long.

The one design flaw I recognized almost before we got started was that there is no button to run all 3 of these vibrations. Therefore, the machine will go for only 8 minutes at a time.  For a 6 year old, that means that even though he may be swinging outside, either he has to remember to push the next button and run the machine for the next 8 minutes (not likely going to happen if he's enjoying his play) or I have to remember and go find him and tell him to push the button.  My hope is that AffloVest will soon fix this flaw so that the "standard treatment" can run automatically for 24 minutes.

Here's the breakdown of the AffloVest:  There are two pockets on the front of the AffloVest.  The front left pocket holds battery.  The battery lasts about 4-6 treatments and needs to be plugged in to recharged.  One of the things I was delighted to learn is there is a car charger!!  Whoo-hoo for doing treatments in the car!

The front right pocket holds the attached "remote control."  Both the battery and remote control are hidden in pockets that, turned up, attach to the front of the Vest.  It's nice they are hidden so there are no cords to be caught when Bennett is playing while doing his vest treatment.


I love how easy with which the AffloVest is to travel.  It comes with a travel bag and an over-the-shoulder strap.  (Unfortunately, our current Hill-Rom Vest is so heavy it has to be on rollers, which makes it easy to carry but difficult to make room for on the airplane or in the truck of our car.)

I had an opportunity to try on an AffloVest when I was at NACFC this past year (I highly recommend all CF parents do this when evaluating a vest - request to try on an adult vest - medical equipment reps are happy to provide one for adults to try).  There is a natural tendency to be leary that the AffloVest might not work as well as other vests on the market since it's battery-powered and feels "weaker."  Trying it on showed me that it's not really comparable to other vests because it works differently.  It doesn't force air into a blatter to shake.  It uses a different kind of vibration.

At this point in our family, we plan to keep our Hill-Rom Vest (and the subsequent living room furniture we bought specifically to house it) and use it most of the time.  But we plan to use our AffloVest in other situations which will improve Bennett's quality of life (like when traveling on a plane, when in the car and late for school, when he's fallen asleep in his bed before we did the vest, when he's at a sleepover, etc).

As Bennett grows, he will be able to articulate which vest is a better therapy for his lungs.  But, until now, we're are thankful to have a new way of caring for Bennett that doesn't involve him having to be sitting on the couch for 20 minutes every day and every night.

Now, Bennett can do his vest while he's in his room, while he's riding his scooter or while he's swinging in the backyard.  Bennett may still have to treat his Cystic Fibrosis but now Bennett can live life even more while doing so!

***Edit on 12/15/15: I have heard a great response from the CF community.  I have also heard healthy suspicion.  I wanted to post my thoughts concerning some hesitation from some clinicians that the Afflovest isn't "as good." Please note that I have not been paid by Afflovest and do not represent them in any way.  Here is my personal evaluation on the Afflovest:

1.) I have yet to see a study that says that the AffloVest doesn't work as good as the others. 

 2.) The AffloVest works differently, so it's a bit hard to compare (I've tried it on and feel it doesn't feel quite as violent of a shake that the Hill-Rom does. However, I think it does have the ability to do things the other Vests don't do such as vibrate separate areas of the chest).

3.) Doing a Vest treatment is better than not doing a Vest treatment so if the AffloVest provides us a way to do a treatment we would have otherwise not done one (such as when traveling or at school), then it's works better than our current vest. I think the jury is still out.

Personally, I recommend it, not as a primary vest but as a supplement to what families are already doing - an option to do Vest in the car after school to and from ball practice, or when traveling overnight, or when a child wants to be active while doing his vest, etc. 


I'd like to hear more from CF adults what they think about it. But overall, my feeling is hand percussion is likely better than a machine and the big heavy machine Vest is probably better than the AffloVest. 

I appreciate that some clinicians may be hesitant to recommend things that aren't "the best." But what I consider "the best" for my son and his family takes in to account much more than just CF.

Try it for 30 days. I'd recommend doing so. Try on an adult Vest. See for yourself.