For the Love of Anna...

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.