Here the Battle Line is Drawn

I never thought we would become germophobes. The daily battle against Anna's cystic fibrosis is in preventing ANY respiratory infection. She is not immunocompromised. Her immune system is completely normal,  however her body's normal response to a cold or flu is the problem. Most kids can clear their lungs of fluid or mucus, eventually recover from the infection and move on. Kids with cystic fibrosis cannot clear their lungs on their own and during a "pulmonary exacerbation" i.e. a flare-up, they essentially begin to get clogged by their own mucus. Because there is always mucus in their lungs, once a certain bacteria (pseudomonas aurigenosa) arrives it never leaves because the evil critters are able to hide in the mucus from antibiotics. The word fibrosis refers to the damage and scarring that occurs in the lungs as a result of the long-term infection and inflammation.

Anna was four months old with her first hospitalization because of a pulmonary exacerbation that started with a cold..    ..this is war.

And here the battle line is drawn. With other small children in the house, the daily struggle against the spread of germs takes has taken on epic proportions. Our two year old does not understand physical boundaries and  evidently thinks Anna is the coolest thing around. He is very affectionate and gentle with his little sister. To our alarm he loves to come up and put his face just microns from her face, and he is very entertained by playing with her hands. Our five year old has a runny nose currently, and has the unconscious habit of wiping his nose with his bare hand. To my horror I have seen him wipe his nose and immediately touch Anna's hand and then have her place her hand in her mouth!

So we are forced to make some lifestyle changes. We have had to cancel some social engagements because others attending were sick. Our CF center has taught us to use hand sanitizer before picking Anna up. We have invested heavily in hand sanitizer and are trying to get the children into the habit of washing their hands immediately when coming in the house from outside and using hand sanitizer before touching her.  It is a little awkward requesting others to do the same.

A month after being out of the hospital, we are still a little freaked out-- obviously.  Forming good habits for our family is ultimatley what needs to happen and then we can move on. We are not holed up in isolation nor avoiding people, but we do need to be more cautious for Anna's sake. We know we will find a balance between being overprotective and putting her at risk. It's just going to take a little time.