Why getting the flu is so scary for Bennett

Since returning home from the hospital two weeks ago, Bennett has been doing really well.  He feels great and is showing no more GI symptoms.  He's on a capful of Miralax a day, which seems to be just perfect for him.  So, now, we are turning our attention on trying to keep him healthy during the flu season.


The flu is always scary when you have a child.  But, considering this is potentially the worst flu season in history and considering the fact that we already deal with an underlying chronic disease like cystic fibrosis, I literally wake up every morning thankful that we have escaped it one more day.

I know I can't do much to prevent getting the flu.  The flu is practically everywhere.  But we're certainly trying to be as safe as possible over here.

There are four main reasons why the flu is particularly bad for Bennett (and all those with cystic fibrosis):

1.) The flu risks serious complications in people with cystic fibrosis, including death.  CF already causes the body to be inefficient in providing the body nutrients and working properly.  The added stress of the flu and lack of appropriate fluids can cause the body to struggle even more.  This can affect the liver and the heart in ways that are particularly serious.

2.) The flu risks Bennett losing weight he can't afford to lose.
Bennett has struggled with gaining weight since he was a baby.  He is consistently underweight and too low for the BMI he needs to have to be healthy.  Getting sick only taps his body more and uses up the limited resources he has.

3.) The flu risks a hospitalization and getting sick with something else.
Our recent hospitalization only further motivates us not to want to land in the hospital.  Thankfully we made it out of our last hospitalization with no flu or additional sickness.  But the hospital is full of bugs that can make Bennett very sick.  So, we want nothing to cause us to be forced back in to the hospital again.

4.) The flu risks damaging Bennett's lungs in a way that he may never fully recover.
This is the part of the flu that most healthy people don't ever have to think about.  Most of the time, our bodies repair themselves without any issue.  But, in CF, it's different.  The word "fibrosis" in cystic fibrosis means scarring and thickening, which is what happens to the lungs when they continue to try to repair themselves. Many times it's a cold or the flu that can bring upon an infection that gets stuck inside the CF lungs.  CF lungs can continue to struggle with it for a very long time, causing damage over time.  In addition, CF lungs are susceptible to lots of rare "opportunist" infections that look for opportunities to nestle themselves in the lungs when the person is already fighting another infection.  It becomes a problem on top of a problem on top of a problem.  So, while the flu may be well over, a new issue in the lungs may rear it's ugly head.

What we are doing at our house to prevent the flu:

It turns out that homeschooling the boys has been really beneficial with regard to their exposure to germs this winter.  In fact, realizing Avonlea was still a risk of bringing it home, we decided to pull her out of preschool for a few weeks to minimize our chances of Bennett getting sick.  Based on the reports I'm getting from inside the classroom, it seems like this has been a good decision so far.

We are minimizing getting out in public as much as possible.  But if we have to get out, we get out during the week, particularly in the mornings, when places are less frequented.

We spend a lot of time outside, playing on bikes and playing in the sun (when it's warm).

We've already gotten the flu shot (something we do every year).  And we're poised to get Tamiflu if necessary.

We are asking anyone who comes over to our house or to play to make sure they haven't been around anyone who is sick in the last 48 hours.

We are washing our hands, using hand sanitizer, not getting too close to strangers and regularly talking about how to prevent getting sick.

However, I feel pretty helpless right now.  It's such a fine balance.  While staying away from sick people is beneficial, staying away from people, in general, can begin to feel depressing.  So, it's a balance between not becoming hermits but also staying safely away from those who may pose a risk to Bennett.

Thankfully, our friends and teachers have seemed to understand.  It helps to talk to other CF parents online who articulate they are dealing with the same fears.

It's hard to be afraid of invisible germs you can't see.  You can feel like you're crazy.  And yet, when I talk to people who have had the flu this year, they remind me I'm not.

It always feels good when someone says to me, "you're doing the right thing" or "that's smart."  It makes me feel better about leaning on my own motherly intuition to keep my child safe.

One of my new favorite crowdsourced websites right now is Flu Near You, a website where you can track flu activity near you.  It's not quite as robust as it needs to be but it's a great way to capture what's going on with the flu on the ground.

Reports say the flu season may be peaking right now so I'm hopeful we're headed out of this flu seasons soon.  Of course, reports are we still have another 11-13 weeks.  And even then, we may still get it.  But I'm trying to do whatever I can to use the knowledge I have to keep Bennett's lungs in the best condition they can be for as long as can be.  That's my job.  I'm his mom.

1 comment:

  1. Thanks for sharing this Breck, this is a great write up on why the flu is so scary for our family also living with CF as we too try to steer clear of the flu this season, here's hoping your family does the same. I'm going to share this on my blog as a reminder to our family and friends on why it is so terrifying.

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