Slideshow Widget

Archive for September 2017

CF Clinic: Update on Bennett

Saturday, September 2, 2017


It's been about six months since Bennett was last in the hospital.  So, I thought I'd provide an update on how he is doing health wise.  Overall the report is that he is doing very very well.  Bennett's bowel issues resolved completely.  It's as though nothing ever happened.  In addition, Bennett's appetite and energy are very good and he feels and looks great!

Bennett had his regular quarterly CF Clinic appointment on Thursday.  This is when we met with Bennett's Pulmonologist and GI doctor as well as the rest of his team (respiratory therapist, social worker, nutritionist, etc.)

To my surprise, Bennett's PFTs (pulmonary lung function test) was lower than usual (at 89% versus 100%), which was mildly concerning.  He is showing no respiratory symptoms and his lungs sound clear but a chest X-ray shows some inflammation in his lungs typical of CF.  So, Bennett's pulmonologist believes his lower lung capacity numbers is likely due to an overgrowth of MSSA (Methicillin-Sensitive Staphylococcus Areus).  MSSA, which is tremendously common in the lungs of those with CF, doesn't typically cause symptoms...but it can.

So, Bennett will go on a round of oral antibiotics in hopes we can get it under control.  We will come back in 3 months as planned and retest his PFT to see if oral antibiotics have made any improvement.


Our GI doctor is still very anxious to get Bennett's weight up for fear his low weight is stunting his height.  Although Bennett did gain 2 pounds in the last 3 months, we need him to gain another 8-10 pounds.  I will continue trying to get him tube-fed at home more often.  Night-time feeds have become completely disruptive to Bennett and my sleep so now we're looking to maximize his day-time feeds, which is hard when he prefers to eat by mouth.  I feel like Bennett is always either eating or doing treatments.  Nonetheless, we'll find a way.

One thing I want to brag on our CF clinic for that I learned about during this most recent visit is the addition of a Physical Therapist to our team.  I am super excited about the addition of a Physical Therapist to our CF team because she will be particularly mindful of ways of incorporating exercise and physical therapy in Bennett's care, something the CF community has known anecdotally benefits those with CF and now are starting to have research to back up.

At our next CF visit in November, Bennett will undergo a DEXA bone scan (something the CFF recommends starting at age 8).  I suspect the scan will show osteoporosis or something similar due to his being chronically underweight and having a lifetime of GI issues.  If the scan does show lack of strong bones, we'll continue to find ways to improve his nutritional status and likely begin a Physical Therapy routine at home or outpatient to maximize his current bone and muscular structure as well as lung health.  

So much of CF care right now is preventative and proactive in anticipation of deteriorating lung health, most active in adulthood.  I am so so very hopeful that in a few years Bennett can get a medication that will slow down this lung deterioration process and give us some more time.  It's so hard to consistently worry about Bennett's health, even when he's doing really really well.