The Great Outdoors...or is it?

For me growing up, it was all about being outdoors and being active. Even as a young girl, while I had my Barbie dolls, I also had a sandbox full of dump trucks, climbed trees, played baseball and loved to ride my bike through the mud. When you think about having a boy, you can often think of the fun definition: Boy: A Noise With Dirt On It. While for a mother of a child with Cystic Fibrosis, dirt has a whole new meaning. Dirt means risks. Dirt is part of that "Big Bad Wolf " that I described way back when Nash was 4 months old and we first talked about taking him swimming---Pseudomonas.

Pseudomonas is a bacteria that I have become paranoid about. If/when a CF patient cultures positive for Pseudomonas they are immediately put on TOBI, an inhaled antibiotic to treat the infection. Pseudomonas is the leading cause of lung infection in CF patients and consequent permanent damage to the lungs. These infections are also one of the biggest contributing factors in the possible need of a double-lung transplant later on in life.

Pseudomonas bacteria can be found almost everywhere including: swimming pool, hot tubs, water slides, sinks, ponds, any standing water, plants, leaves, soil, dirt, animals etc. When we first debated taking Nash swimming last year we talked to clinic about our concerns of taking him to a public swimming pool. The doctor looked at the sink in the room and said, "There is more risk of there being Pseudomonas in that sink than there is in a public swimming pool." That's his opinion and while others may not feel the same way, we choose to take Nash swimming and try not to think about that "Big Bad Wolf". The doctor did however advise us against hot tubs and when talking about summer and camping he told us that while the smoke from a campfire may affect him, it also could for any "healthy" person. He did say that as Nash gets older that we should avoid having him play in piles of leaves, raking leaves etc. as it would stir up the Pseudomonas and could cause infection in his lungs.

Enter present day. A couple of weeks ago I took Nash to get photos done for the "Beads of Courage" program. When we arrived at the location and walked to where we were to have the photos done, I almost became paralyzed with fear. There in front of me was a big pile of leaves and a blanket set up and some toys. While the photographer and the Executive Director for Bead of Courage would have no idea of any of this Pseudomonas nonsense, I found myself at a crossroad. Do I just ignore it and go on with the photos as planned or do I explain my concerns about the location? I told myself that we can't have him live in a bubble, and while beyond stressed about the whole situation, I tried to block it out.

The whole way home I thought about how much CF has a hold of us. Something so simple as getting photos done where he is walking through leaves, has me all stressed out. I start thinking that I'm being a "neglectful parent" and how I would feel if he cultured Pseudomonas and I was the one that put him in that situation. I still don't know if I made the right decision and I also know that this is just the tip of the iceberge. He's not even 2 years old and I'm already thinking about all the instances throughout his childhood that I'll be faced with the same dilemma. Do I let him do this or not? And what about when he starts school and I don't have as much control over what he does throughout the day?! Oh man.

So for those who have children who can run freely through the leaves, roll around in them, go in a pool or hot tub without thinking twice, think about how something so simple can be so potentially harmful for someone who has Cystic Fibrosis. This is just a glimpse of how CF affects our lives.