21 August 2011


I received a call from our GI doctor's office yesterday morning.  It is always surprising to get a call from the nurse on a Saturday.  Turns out that the doctor wants to get a copy of the pathology report from Bennett's CDiff test results so he can determine the type of CDiff bacteria it is.  Depending on the type, Bennett will be placed on medicine for a month or more.  Last time, he was placed on it for 4 months.  But this time, it may be less.

Ultimately, we don't want Bennett to become resistant to the medication used to help treat his CDiff.  Flagl (the first line of defense) doesn't seem to affect Bennett's CDiff.  Vancomycin (the second and last line of defense) is working.  But there are some who have CDiff become Vancomycin-resistant, which is a scary thing.  (It's extremely uncommon but it's possible.)

Thankfully, we are not there and we have a wonderful GI doctor who is willing to go above and beyond to help us sort out this recurrence issue.  But I do have a pit in the bottom of my stomach.  Fears like, "what if we can't really get rid of it?" and "what if we became resistant to the Vanco?"  These are things I cannot control.  And, like CF, we must just take one day at a time.

Here's an interesting article I found in the news today:

So, there is only one other child who lives in the Waco area that I know.  (There are a few who live outside of the area but only one who lives inside Waco.)  Turns out, we are just about to send Oliver to the same school this child attended until recently (and whose little brother currently attends).  Ironic!  My heart skipped a beat when I read this family's name on Oliver's school website.  I immediately wrote this child's father to let him know and to find out if he was concerned.  Thankfully, since the only children attending the school will be both of our non-CF children, we feel ok.  But it does make it a bit harder for both families to feel as safe as we could be should we not be dealing with this issue.

I am thankful for the boy's father being so sweet and welcoming to us into this community.  It's hard to think another person is somehow a threat to your own child's health.  But both of our families have vowed to stay in constant communication and will do whatever we can to keep both children healthy.  Thankfully, neither of our children have contracted any serious lung bacteria that would concern us.  And, if necessary, I don't mind switching schools if that would help the both of us breathe easier.  Many families go to schools with several CF children (although they are rarely in the same class) and, of course, many families have more than one CF children in the family.  But, my bigger concern is the encroaching on another family's safety with regard to CF.  It's weird to have to even think about these things.  But I am keenly aware that we are going to have to begin doing so as Bennett gets older.

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