from Wende:
- We disinfect our hands with hand sanitizer every time we
get into the van after being in a public place- library, store, playground or
friend’s house. There is a bottle
of hand sanitizer in the back seat for the kids and one in the front for the
adults.
- Before we settle down in the pew at church I whip out a
disinfectant wipe and scrub down the back of the pew in front of us and often
the pew behind us as well. Try this sometime and be amazed at the amount
of gunk that comes off. Yuck.
- Instead of putting Anna in a cart at the store, we opt to
bring in the stroller. If we must use a cart, I do have a fabric cart cover
that I purchased to set her in.
- We disinfect our hands before handling any of Anna’s food
or dishes and I try to never put them on the countertop, but instead place her
things on a clean paper towel. I sometimes even put a bottle of hand
sanitizer on the table at meals, you would be surprised how many times you
touch your nose, face, or other people’s cups
during a meal. I am always attempting to
teach table manners to the kids, but one important one now is to use a serving
utensil to serve oneself from common
plates- like fruit, cheese, bread and other items that are tempting to pick up
with your fingers.
- I chart all of Anna’s symptoms from coughs, to sleeping
habits, and mostly bowel movements (to be sure her pancreatic enzymes are
working properly).
- We regularly disinfect toys and board books with
disinfectant wipes to try to avoid spreading germs in the house. I especially
wipe down any books or toys that I may take into
public before putting them out for play in the house.
- After discovering that one of the “CF germs” (germs that
like to take up residence in the lungs of people with CF and are resistant to
antibiotics) lives in water, especially stagnant
water- I now clean the bathtub with bleach cleaner each time before bathing
Anna. I also do not allow her to play
with any type of bath toy that holds
water.
- Sadly, I have stopped dipping into the holy water font at
mass for the same reason.
- Every day after Anna’s respiratory therapy we have to boil
her nebulizer and other equipment then leave it to air dry.
- Anna always gets a
fresh clean towel and washcloth for every bath or any time we are going to wash
her hands or face.
- Because the most common “CF germ” is water-borne it can
also be found in wet soil (the CF doctor told me that it comes into hospitals
on people’s feet). Therefore, I don’t
allow any shoes to come into the house- all must be taken off in the garage
before entering.
- Only Steven or I are allowed to feed Anna or to touch her
food or her tray. The kids are not allowed to feed her.
- We have removed the hand towels in the bathroom and now
use paper towels for sanitary reasons.
- Then there is the bread… I will let Steve tell you about
the bread.
- Every time we have a social engagement- a birthday party,
play date, and even Thanksgiving- we call those who may attend and ask if they
are feeling healthy, especially if they
have children they are bringing to the event.
We have been told by the CF team that we need to avoid people who are
sick if at all possible. When we are in
social situations, those who may want to handle Anna are asked to disinfect.
Otherwise, we were told that a three foot distance from others is considered “safe”.
- Because CF also affects the pancreas, Anna must have
pancreatic enzymes before she eats or drinks anything to aid in her digestion.
If she does not have these in the correct
amount for her weight and for the type of food being consumed, she will not
gain weight properly.
- At the suggestion of the pediatrician, I continue to nurse
Anna much longer than any of the other children. The thought was that she may
benefit from my immunity especially through
the winter season.
- To their great dislike, all of the children have received
the flu shot since Anna’s arrival into our home.
- When we go to the pediatrician for check ups, I call the
front desk and tell them that I am waiting in the parking lot, asking them to
give me a call when they are ready to see Anna. In that
way, we do not have to expose ourselves to sick patients in the waiting area or
to surfaces that are not clean. We do
this at the suggestion of the CF team. When we go
to the hospital where the CF clinic is located, we are immediately escorted to
a room which was prepared ahead of time- all the surfaces being wiped down between
patients. The CF team wears gowns and
masks, and the doctor wears gloves.
- Each night I quietly sit on the floor by Anna’s crib and I
count the number of breaths she takes in a minute- this is called the respiratory
rate. The number of breaths can indicate whether she
is experiencing stress or if there is a sickness coming on. For me, it gives me something to hold on to…
and on most nights, relief.
