30 November 2009

Things we've learned so far...

Things we've learned so far about caring for a CF Child:

1.) If Bennett has a fever more than 100.6, it is an immediate admission to the hospital.

2.) Bennett *must* get a Synagis shot no less than every 30 days between the months of October-March from now until he is 2 years old.  A Synagis shot is a FDA-approved medication to help protect high-risk babies' lungs from severe RSV.  RSV can be fatal for Bennett.

3.) Bennett must take ADEKs Vitamins every day because his body cannot absorb important vitamins like Vitamin A, D, E and K (hence, ADEKs).

4.) If we go to the ER with Bennett, we should always avoid the waiting room and use the ambulance entrance instead.  This is to avoid Bennett from being exposed to anyone with the sniffles, a cold, the flu or contagious infection or disease that might make him sick.

5.) Bennett will never get fat.  Bennett must be fed high calorie, high fat food daily.  However, since his body does not absorb the fat, he will never get fat.

6.) Bennett will have to take multiple pills every time he eats for the rest of his life.  Otherwise, he will not absorb his food and will starve.  At 8 weeks old, Bennett already takes 13 pills per day.


  1. Wow. While that seems so daunting and overwhelming, I know you will do every bit of that willingly and with grace. Those things might seem like a hassle, but I know you will do anything to keep your boy healthy. I know you can do it!

  2. How do babies swallow pills? Is that a challenge?


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