I finally talked to Ricky's NP at the CF clinic and he cultured two bugs last
week.
(1) Serratia which I guess we've figured out isn't dangerous at all.
(2) Stenotrophamonas Maltophilia (sp?) which really knocked the wind out of
me.
Just when we were starting to do so well, now this. I guess we can't ever do
WELL with this disease, we just have to keep getting knocked for a loop.
Wednesday, February 21, 2001
Tuesday, February 6, 2001
What is cystic fibrosis?
Now I will educate you about CF!
Cystic fibrosis is a lung and digestive disorder that is passed on by DNA... Meaning Rick and I are each carriers, therefore each pregnancy we have together has a 25% chance of ending up with the child having cystic fibrosis, and 50% chance of being a carrier (Andy is in the other remote possibility of 25%, he is not a carrier nor does he have the disease, thank goodness).
Kids with CF have lots of problems, but the main ones are:
1. digestive - they cannot digest fat, or absorb fat soluble vitamins, without the aid of a digestive enzyme pill
2. lung - they have frequent lung infections and pneumonias
Ricky also has CF related sinus infections, bronchiectasis (inflamed bronchus tubes in the lungs), and gastroesophageal reflux disease, all of which can stem from CF. He also has a lazy eye, farsightedness, and possibly learning disabilities, which do not stem from CF.
He requires hospitalization from time to time for his pneumonia (twice last year) and has had sinus surgery once (also last year). He also gets breathing treatments twice a day and takes about 10 different medications on a daily (sometimes twice daily) basis, not to mention digestive enzymes at each meal.
Since he is so young, I do have to worry about his therapies and medications and general health... I'm hoping as he gets older and takes more responsibility for these things himself, I won't have to worry as much. But for now the problem remains! Since I am his mommy (and Daddy leaves it to me to handle absolutely everything) it is my sole responsibility for now.
Good links about CF:
Cystic Fibrosis Research, Inc.
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic-L (the email list I belong to)
Cystic fibrosis is a lung and digestive disorder that is passed on by DNA... Meaning Rick and I are each carriers, therefore each pregnancy we have together has a 25% chance of ending up with the child having cystic fibrosis, and 50% chance of being a carrier (Andy is in the other remote possibility of 25%, he is not a carrier nor does he have the disease, thank goodness).
Kids with CF have lots of problems, but the main ones are:
1. digestive - they cannot digest fat, or absorb fat soluble vitamins, without the aid of a digestive enzyme pill
2. lung - they have frequent lung infections and pneumonias
Ricky also has CF related sinus infections, bronchiectasis (inflamed bronchus tubes in the lungs), and gastroesophageal reflux disease, all of which can stem from CF. He also has a lazy eye, farsightedness, and possibly learning disabilities, which do not stem from CF.
He requires hospitalization from time to time for his pneumonia (twice last year) and has had sinus surgery once (also last year). He also gets breathing treatments twice a day and takes about 10 different medications on a daily (sometimes twice daily) basis, not to mention digestive enzymes at each meal.
Since he is so young, I do have to worry about his therapies and medications and general health... I'm hoping as he gets older and takes more responsibility for these things himself, I won't have to worry as much. But for now the problem remains! Since I am his mommy (and Daddy leaves it to me to handle absolutely everything) it is my sole responsibility for now.
Good links about CF:
Cystic Fibrosis Research, Inc.
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic-L (the email list I belong to)
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