I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Saturday, March 7, 2015

The Germ Pool



We have been seen by 6 different pulmonologists over the past 8 years at PCH and all have given us variations of information on our daily living that we have been grateful for. One piece of information that we have heard many times from the doctors is that going into a hot tub/Jacuzzi is dangerous for a person with Cystic Fibrosis. This is because of the higher germ content that is steaming into the air around you as you sit in it. So yes, sharing a large bathtub with lots of strangers that hasn't had fresh water and been thoroughly cleaned in who knows how long isn't good. This was an easy enough piece of lifestyle to change.

Because I had heard this from several very trusted doctors I took the advice very seriously. We live in a community with a shared pool area. It also has a hot tub. Because it has a cute little bench that wraps around the 5 foot circle it is appealing to kids and parents alike in our community because its fun and usually not that hot. So lots of families use it as more of a kiddie pool. The kids can play and stand in the shallow water on the step and its fun and less scary than the much larger pool.

Maelee would see these kids playing and desperately want me to take her into the hot tub. Trying to think of a way to explain it to her I told her that our doctor said it wasn't a good place for us to go and that even Daddy and I didn't go in them. For a while that explanation worked. Then she would ask again and I would try to give her a better reasoning, this happened several times. Finally one day I told her, "Look Maelee, we don't swim in there because its the germ pool. It's full of germs that can make us sick and we just don't go in it."

So when her brothers got old enough to ask if they could go into the hot tub, she was right there with a very understandable explanation. Now instead of the kids questioning why they can't go in, they want to know why in the world other people would want to. 

When we walk past the hot tub while taking the dog for a walk or checking the mail and they see people in it one of the kids inevitably starts screaming to me "MOM WHY IS THAT LADY IN THE GERM POOL." Its kind of awesome, hopefully not too offensive to those in the community though.


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