Tuesday, April 26, 2011

Little Tweaks

When you are dealing with cystic fibrosis, bacteria and viruses suddenly take on a whole new significance.  I know that fighting germs is a losing battle.  No matter what you do, people with CF will acquire infections and viruses.  Still, because I am Brady's mom, I have to do everything I can to minimize their devastating effects on his little body.  Think back to a 7th grade science class, when you were learning about different types of cells in the body.  People with CF have dysfunction in their epithelial cells (mucous membrane cells).  Normally, there is a fairly thick layer of water on the surface of these cells, creating an environment for cilia(the little hair like projections on the cell) to sway freely in the liquid, sweeping away any foreign bacteria or particles out of the lung.

People with CF have a salt imbalance in these cells, which creates a water shortage on the surface.  Instead of swaying freely in the liquid, the cilia are bogged down in a thick sticky mucus, as can be seen below in the image on the right.  The lungs become unable to clear normally occuring bacteria like staph, or pseudomonas aeriginosa out of the lungs and chronic infections develop.  Over time, it is these infections, and the inflammation and scar tissue that they cause that lead to respiratory failure for CF patients.  The introduction of a respiratory virus almost always complicates issues further. 

Anything that causes further impairment of the respiratory system, and creates even more thick mucus becomes a recipe for worsening lung infection.  It is not an easy job to fight an enemy that you will never defeat.  Bacteria and viruses are everwhere.  I realize that I will never be able to control Brady's environment completely, but I feel that it is my job to give him the healthiest environment possible for his lung health.  We have made some little tweaks to the way we do things around our house and I think they have gone a long way toward keeping Brady healthy.  It is tough to really put these things out there because I will inevitably be judged.  I realize I am paranoid.  I realize that the way I think is not "normal"...and I don't care.  If any of my other CF moms take away a few tips, then it is totally worth it. 

1) Hand Hygeine.
 This is the obvious choice for my #1 tip, and the importance cannot be stressed enough.  I can tell you with 100% certainty, that paying close attention to hand hygeine works to prevent illness.  I have been sick less than once a year since I had Brady because I started paying attention.  That is a significant decrease for me.   I preach thorough hand washing, use of hand sanitizers and antibacterial hand wipes, and ALWAYS USE PAPER TOWELS TO DRY HANDS!  I know that tip is not going to be popular with the environmentalists, and I try to compensate in other ways as much as I can, but the action (actual friction) of using a paper towel to wipe your hands dry removes the greatest amount of bacteria and viruses from your skin.  Discarding the towel eliminates the chance for spreading.  I installed paper towel dispensers in my kitchen and bathroom and I ask everyone that comes into my house to wash or sanitize.  A company called Brick House makes paper towel dispensers that don't look so industrial and come in many colors: http://www.brickhousedispensers.com/.  I get boxes of multi-fold paper towel refills from Costco.  I don't even own hand towels anymore.  They remain damp for long periods of time and can be an ideal breeding ground for bugs.  Do I take Brady places and let him touch things...absolutely!  I just santize his hands afterword.  Does he play with other kids and at playgrounds etc...Yes!  But he can expect a bath when he gets home.  This behavior has been ground into him practically from birth.  He knows exactly what to do with "hanitizer."

2) Clean with killing on your mind.
Cleaning your house takes on new significance when you have a child with CF.  It become less about tidying up and more about killing.  You have to pay close attention to the products that you are buying, making sure they kill bacteria and which kinds.  Use cleaner in the appropriate strength and for the appropriate length of time.  Using diluted solutions or rinsing off early has actually been shown to promote bacterial resistance and is a big no-no.  I actually hate most of the best killing products, but they have a harsh smell and are very irritating.  There are some great natural products that work just as well.  I like Seventh Generation: http://www.seventhgeneration.com/Disinfectants?sub-cat=botanical-disinfectants.  We have hardwood and ceramic tile flooring in the upstairs of our house.  We clean our floors weekly with our trusty Steam Shark.  I love it because it cleans and disenfects with water.  No stink and no chemicals. 

I am also a big fan of cleaning with UVC technology.  UVC is a wavelength of light that has been implemented in appliances like vacuums, air purifiers, sanitizing wands, etc...  Exposure to this light kills bacteria, viruses, mold spores, and dust mites in seconds.  It leaves behind no chemical residue, has no smell, and can be used on virtually any surface.  There are some very convincing studies on the efficacy of UVC light in fighting bacteria and the technology has been used in the healthcare field for years:
http://www.esmagazine.com/Articles/Feature_Article/d843d8e109da8010VgnVCM100000f932a8c0____ .  Here is a little video I made about it:  Since I made this video, we have installed another UVC product in our home--a whole house air sanitizer by UV-aire mounted in our heating/cooling ductwork.

3. Get rid of bacterial traps in your home.
Cleaning sinks and toilets is a no-brainer...but unexpected things can be dangerous for CFers in the home.  For example, this article discusses how harmful bacteria can lurk in your showerhead: http://healthmad.com/conditions-and-diseases/shower-heads-harbour-dangerous-bacteria/
When we finish showering, we leave the shower head dangling down so all the water runs out of the hose to keep the insides as dry as possible.  Every few weeks we soak the shower head in bleach water. 

Houseplants can also be a culprit.  The moist soil can grow nasty bugs.  Fortunately, I had already "taken care" of most of my houseplants by killing them with a lack of water ;).  Now, I just keep them out of Brady's reach, or skip them altogether. 

We have a dog in our home and I try to keep his bacterial contribution to a minimum.  First of all, he is a tiny, hypo-allergenic Yorkie.  I bathe him weekly and keep his food/water dishes and dog bed clean with UVC light and frequent washings.  Fishtanks are known to grow some nasty things, so we don't have one. 

As part of our cleaning regime, we also wipe down most hard surfaces and electronics in our home at least weekly with a disinfecting wipe.  I'm talking about: remote controls, light switches, door knobs, computer keyboards, cell phones, refrigerator door handle, buttons on microwave, kitchen chairs, you get the picture.  We also do countertops, tables, and wooden furniture with a disinfecting wipe and use the UVC wand on the couch, toys, and dog bed.

Finally, I wash all of Brady's clothes in HOT water.  I buy his clothes a little big because I know they will shrink.  If it can't be washed in hot water, I usually don't buy it.  I also wash all towels, rugs, blankets, and underwear in hot water.   http://abcnews.go.com/Health/Wellness/washing-machines-loaded-bacteria-dirty-clothes/story?id=10751420  Once again, the laundry is a place where things can be damp for long periods of time.  Make sure to switch laundry over to dryer promptly and dry until thoroughly dry on high heat. 

4.Avoid bacterial traps in public.
Here is where things can get tricky.  What can you do to fight germs when you are not in your own home?  A lot.  First of all, I always carry disinfecting wipes, hand sanitizer, and antibacterial hand wipes in my purse.  Most grocery stores carry disinfecting wipes at the door, but I carry my own...just in case.  This article refers to shopping carts as, "rolling fecal bacteria Petri dishes."  Enough said.  http://articles.nydailynews.com/2011-03-08/entertainment/28686369_1_carts-bacteria-flu-bug
I also carry my own pen and keep it handing to avoid using the one everyone has been touching all day.  I will turn around and walk the other way if I hear someone coughing, and I think my head would explode if someone sneezed in my face. 

My most important piece of advice about avoiding public germ traps is TIMING.  I try to run my errands and make my appointments early in the day.  I take Brady to places like the library first thing on Monday morning (after a weekend of no kids and probably a cleaning).  I do my grocery shopping on Friday or Saturday night, or super early in the morning.  The store is usually empty then.  Making small tweaks to scheduling of your outings can greatly reduce the number of germs you come into contact during cold and flu season, when it seems like everyone around you is ill.

5. Limit exposure... to an extent.
When you are hit with a virus and you have CF, treatment time often doubles, reaching 3-4 hours a day.  It is not uncommon for people with CF to be hospitalized several times a year for IV antibiotics resulting from exacerbations from viruses.  For these reasons, I avoid people that are obviously sick and will steer Brady clear of anyone that is snotty or coughing. End of story.  All of our friends know about Brady's CF and avoid us if they are sick.  When we take Brady to the CF clinic or pediatrician's office, I take the first appointment of the morning, to minimize exposure.  If Brock or I get sick, we are quarantined to the basement of our split-level house to try to prevent spreading germs to Brady.

6. Take care of yourself.
I have no business talking about this subject because I am not very good at it.  The thing is, to keep your child healthy, you must remain healthy yourself.  That means that no matter how depressed or frustrated you are, you must continue to eat and sleep and try to exercise once in a while.  When you get stressed or sleep deprived, your immune system suffers.  Coffee is not a food.  When you eat properly, your immune system functions better.  The only reason that I care remotely about this is because I am one of Brady's main sources of exposure to bugs.  If Brock or I wind up sick, chances are much better that Brady will get it.  Also, we ask so much of Brady to remain healthy.  I need to be a reasonably good example for him of show him that everyone has to work a little to stay healthy. 

These little tweaks make us a little different from some families...and that suits us just fine.  Thinking this way doesn't just happen overnight, Brock and I have been in training for 3 1/2 years now.  Most of these things are changes that we have made, as parents.  Brady has absolutely no ill feelings about using hand sanitizer and will grow up thinking that cleaning the house top-to-bottom every Saturday morning is just something that all families do.  My husband has been supportive of all of these changes and is an absolute cleaning machine.  Nothing is sexier than seeing him hike up the legs of his sweat pants and fire up the Steam Shark.  I know...I'm lucky.