Tuesday, October 12, 2010
The Great Debate
We enjoyed the weekend outside!
The kickball pictures I promised..facebook makes my life too easy. It feels like cheating!
I recently saw this question posted on one of my fav CF sites: Cystic Life (started by Ronnie Sharpe, a fellow CFer I met through blogspot-a social network for the CF community. And it's really a great debate among CF parents: When do you call the doctor? I'd thought I'd share my philosophy on this much contested question since, in my opinion, it's one of the toughest to answer. There are so many factors, so many conditions that weigh in. Here's my thought process:
1) LISTEN. When one of the kiddos start coughing I evaluate how wet/dry it sounds. Before my kids were diagnosed with CF I had never used such adjectives in conjunction with the word "cough." And then there's the other question: how can you tell? Good friends of ours, the Needhams, who also have a son with CF told us: "You'll know." And, they were right.
2) COUNT. After the coughing begins it's time to do math. Yes, I keep tabs on how often and at what point in the day. At rest, the thick mucus of CF tends to cause more exacerbations. So typically the hardest part of the day for the kiddos is in the morning after a long nights rest after the mucus has had a chance to build up.
3) SIT. Simultaneously with steps 1 & 2 we increase chest PT from at the very least one time a day to two, even three, and sometimes four times a day.
4) And when all else fails after 5-7 days of 1, 2, & 3 OR a gradual deterioration. CALL. By that point I can just "tell" from the sound of the cough, the quality and quantity that there is no way this nasty cold is going to make its way out without a little assistance. The docs then will prescribe an antibiotic over the phone. Of course there is always the chance in real life that the antibiotic doesn't do the trick either and in that case there's more to this blog. But that's a story for another day.
So, what does this look like in my world? Take this for instance:
Cayden and Cooper both have coughs. Coopers started out with green drainage (aka boogers :)) from the nose and eyes. Increased PT and the green goop disappeared, nose drainage turned clear (good things...) Coughing slowed a bit. Then, it took a turn for the worse. Coughing quality worsened and frequency increased. Called the doctor after about a week and half since it looked as though he was turning the corner.
Cayden, on the other hand started coughing about the same time but no runny nose. His started with coughing during the middle of the night and to the point that it was waking him up from his sleep. Increased chest PT to 2-3 times a day but no change over the weekend. I decided to see how he did on Monday at school. Nearly NO cough :). Chest PT is amazing. SOOO simple, but such a great maintenance for lung functions. I swear by it.
Sometimes I take for granted how healthy they really are. And then, on occasion, it hits you when you least expect. On Sat. we were out and about enjoying the nice weather at a pumpkin farm and Cayden started coughing really hard from running so much. He looked like he was in so much pain. When I asked him what was wrong, he said "my lungs hurt." This was the first time we've seen him limited by CF. It broke my heart.
I hope that you are all enjoying the nice fall weather. We'll be camping this weekend with good friends. Thanks for reading...
Cooper is already 5.5 months old! Where has the time gone...