13 January 2011

Momma Bill of Rights

I've been pretty frustrated that the GI nurse has yet to call us back to clarify to us if she said "ID" or "IV" on her message last Friday afternoon.  At this point, I'm not expecting a return phone call to either of the calls I placed on her voicemail regarding that issue (in addition to the other two issues I had also hoped to discuss with her and had left messages about earlier last week).  

As Dr. Phil likes to say, "This ain't my first rodeo."  I feel the same way.  As a parent of a special needs child, I've been doing this merry-go-round phone tag stuff with too many clinics for too long now sit back and casually wait for someone to help me.  If a clinic won't bother calling me back in an appropriate amount of time, I'll track them down...or I'll go around them.

My persistence is never meant to be rude...or to come off as being "more important."  I believe many doctor offices and clinics are extremely busy.  This nurse is likely just swamped with other needy patients.  However, sometimes I have to wait weeks to hear back from clinics...or don't end up hearing back at all.  Their response? "Oops, sorry..."

I have no doubt that, in return, I'm on some nurses "bad list" of parents who are persistent.  But I am quite aware that if I don't give Bennett a voice, no one else will. 

I've created a sort of "bill of rights" for myself regarding Bennett's care.  The first thing on my list is: "If a clinic, pharmacy, health insurance person or medical billing institution will not call me back within 48 hours to, at the very lease acknowledge my call,  I have the right to find another way to get my question answered." 

The GI nurse is really nice.  I've met her in person before.  She always seems very sincere.  But by-golly, she drives me nuts.  It seems I get a response for every 2-3 phone calls I leave for her.  Never do I get her on the phone live.  I always have to leave a message...which means I either leave one of those ridiculously long messages with everything she needs to know or one of those "call me back" kind of messages.  Either way, I may or may not get a call back.

Another "right" (and I use "right" very loosely) in my self-legislative bill of rights is, "I have the right to learn about new treatments from Medical Journals and Medical Studies myself and ask my doctor about what I've found."  I did this the other day when I found an article online (there are some great ones at regarding C.Diff.

What I found was two of the medications Bennett currently takes may actually be offering a sort of "fertile ground" for C.Diff. in his GI tract.  The first is a PPI (which, for him, is Prevacid) and the second is his elemental formula (Elecare).  This study suggested that stopping both medications could help the C.Diff. go away.  I felt like it was worth asking the GI doctor about it. 

When I realized yesterday that the GI doctor's nurse wasn't going to call back, I decided to call the Dietician at our CF Clinic and have her suggest a new formula for Bennett to use as his sole source of nutrition.  The CF Dietcian called back a few hours later (gasp!) to let me know that she spoke with Bennett's CF doctor and both of them were hesitant to get involved in changing his formula when the GI doctor's medical notes seemed to indicate he already had a plan to get Bennett off Elecare.

I explained that we were in the process of getting him tested for a milk allergy since Bennett had, at one time, indicated through his intolerance of his formula that he might be allergic to milk.  However, I also explained that I knew of no "plan" to get him off as our GI doctor didn't even want to see him again for another 4 months.

The CF Dietician said, "well, it looks like here that he wants to see you next month."  I said (after sharing all my frustrations with working with the GI nurse) that the reason he's going to see Bennett in one month is because I called for an appointment and requested that we see him as soon as possible...mainly to get around the GI nurse who seems to be stalling any effort to go forward.

The CF Dietician seemed to be more empathetic after learning this information.  She offered another way for me to get around the GI nurse - talk to the GI Dietician.  I didn't know Pediatric GI doctors have Dieticians in their office too, but they do.

So, I called the GI Dietician up and stated my case.  I want to take Bennett off his elemental formula as soon as possible.  I told her how we're facing seeing an Infectious Disease doctor regarding Bennett's third bout with C.Diff and explained the new information I have that says his Prevacid and Elecare formula may be to blame.  I want us to fast-track Bennett off his formula asap.

It was wonderful to call her and have her pick up immediately.  It was a delight to feel like she heard me and took me seriously.  It was thrilling to have her offer me her email address so she could evaluate the medical study I had found.  And it was nearly shocking that within 24 hours, she had spoken with Bennett's GI doctor and together they had come up with a plan for us to change Bennett's formula immediately.

I am very happy to have answers and support...but sad that it took two weeks longer than it could have taken if the GI nurse had just called me back when I had originally requested that she would.

Nonetheless, we will be purchasing some Pediasure this weekend and begin our process of weaning him from Elecare to Pediasure.  Eventually, once this C.Diff. is in control, we will begin our own preliminary process of weaning him from the g-tube in preparation for the real weaning at Baylor Feeding Clinic this Spring.

We are still waiting to hear back on Bennett's C.Diff. test, which we should hear by Tuesday.  We will try again Monday to do bloodwork to test for milk and soy allergy (another "right" from my "bill of rights" came into play today when he was poked for blood no less than 4 or 5 times - "No more poking for blood more than 3 times in one day...and no more from the phlebotomist substitute at our Pediatricians office").

In the last three days, Bennett has started to show signs he is feeling better.  We have seen less if any symptoms of C.Diff.  I am hopeful that maybe my intuition was wrong and his C.Diff. cleared up at the eleventh hour.  We shall soon see.

I'm always adding to my "right", of course.  The last one, though, will always be, "I have the right to think about something other than Cystic Fibrosis."  So, on to the Grocery store I go!

P.S. Other "Rights" on my List include:
* I have the "right" to never miss a call from the doctor.  Therefore, I got myself a Google Voice phone number, which allows me to receive calls on my cell phone and house phone at the same time.  Therefore, whether I'm home or out and about, I can get a call.  Best of all, if they leave a message, I can get it as a text and/or email message.

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