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...

8 comments:

  1. 5.5 months - wow! It goes so fast, doesn't it? He is such a doll.

    How's your Princess? ;)

    Always LOVE reading about your family.

    Hugs!

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  2. Wow, I am just stunned that a mother would knowingly pass on a horrific genetic disease to not just one, but three of her children! Are you really that selfish? How could you do that to your sweet innocent children? Have you not heard of genetic counseling and birth control? Obviously your kids all have the same mutations.
    I just cannot believe a mother would ever knowingly inflict this kind of suffering on their child. This is just so disturbing on so many levels. Once you found out your first child had the disease, you must have realized that you were a carrier and would risk passing it on again, but you went ahead and did it two more times.. Wow, just wow.

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  3. Dear Pink Cupcake,
    I am the dad of my wonderful kids and one lucky guy to marry such a giving wife. You should really think before you speak, because if you have read anything in these blogs, you would realize my wife is amazing and my kids are precious lives. Maybe in your world birth control, and abortion is your answer, but it is not in our vocabulary. We cannot play God and we should not have that power either, there are way too many people like you that think that are "selfish."

    I knew sometime in my kids life that someone may judge our decision to be open to life and i never knew how i would respond to someone like you. I thought i would be worried what you may think, but then i look at these beautiful children and say i wouldn't trade them for the world. Yes our life is very very different then most. But we do not just sit on the sidelines and make this disease there lives. We work and work so they aren't sick, raise money for more tomorrows.

    I would like you to do me a favor, as you are so bold to write that to my wife. Why don't you tell my kids that they shouldn't have any brothers or sisters cause they might have a genetic disorder? That sounds really selfish if you ask me. So take your Wow and shut your mouth.
    Chris

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  4. Hey Tiff- I read your blog every time you make a new post and can not say how amazed I am every day that you have such a positive attitude and outlook on life. I find it disheartening to read what cupcake wrote, but I also want you to keep in mind that people are very judgement of the things that they are not capable of. Remind yourself that you and Chris are unique individuals in this world that have a faith strong enough to put your life into God's will, a love strong enough to over come fear, and strength that cannot be defeated. Not everyone are capable of what you and Chris are doing every single day of your lives. And I find it saddening for you to feel a punch in your gut, when what you are doing what you know is right, and what you have been taught. You are an example of living by faith, and do not let the fact that not everyone is capable of what you are doing deter you from what you do! Keep your head up, it's the only way you can see God smiling down at you.

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  5. Hey this if Tiffany's mom. I just want to comment on Pink cupcakes comment. I will pray for you everyday. Some day when you are facing God and you will, he will ask you about this blog. You won't be able to deny it. I raised Tiffany to respect life and to accept whatever God gives you. It is awful easy to have faith in God when things are going your way. Tiffany & Chris are amazing people. They lost their home in a house fire shortly after they got married. They have weathered the storm and have remained faithful to God. Because of that I have four beautiful grandchildren and until I take my last breath I will keep fighting for a cure for CF. They have taught us so much about what is REALLY important in this life. WOW Tiffany & Chris I love you!!! WOW

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  6. Wow Tiffany and Chris Wow! You are amazing examples to your children, to mine and to all those you come in contact with. And what I take away from this the most, is what an extraordinary love for each other you have. You two are definitely a match made in heaven. God knew what he was doing when he brought you together and also when he blessed you with each of your children. I have always been and continue to be brought to a deeper faith by the two of you the more I know you. Remember you are loved by more people than you could possibly imagine, that is always encouraging!

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  7. As a woman with Cystic Fibrosis who has 2 siblings with CF as well, I can't express how nice it was to have two of my best friends know what I was going through, and help me through it. I'm from a family of 10 kids - 3 of us have CF.
    Our parents choose to take the natural route, and as a result, we 3 are very healthy.
    I can't imagine growing up with CF, and NOT having my CF sisters with me.

    I don't understand the online attack from people who don't even know you, making such judgments. Do you attackers even have CF? Do you know what it's like? I am a CFer. I know.

    Tiffany, you are a wonderful mother who cares for your children. Keep on keeping on!

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  8. Makes me heartbroken that people would be so awful. The truth is, unless we walk in someone else's shoes..We CAN NOT POSSIBLY know how we would feel. Why? Why? would someone choose to be so mean and hateful? To the mama of this sweet blog, first time I have ever been here,and as a fellow human , I am so sorry that people have been sp cruel. Dont listen. You know your heart and you look at your sweet babies EVERY SINGLE DAY and I am sure that you cannot imagine your life without them. To all of the haters:I pray you never have to walk a day in her shoes. I know i would not want to be judged so hard,and I am sure you would not either. We may not all agree, but show some compassion.

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