11 February 2011

An Update On This Week's Doctor Appointments

We *love* DVD players at the doctors office!

Well, the week is over - and so are the three doctor appointments we had this week.  We have another two tomorrow and we should be done for the month.  Whew!

On Monday, we met with the CF doctor.  It was routine visit and went well.  Here are the highlights of the appointment:
* Bennett's lungs sound very clear, which is wonderful.
* Bennett was given a throat culture, which was all clear!
* Bennett did not gain the appropriate amount of weight since his last CF visit in December. However, considering his recent hospitalizations and struggles with C Diff, we were surprised. We will follow up with the CF doctor in a month so that she can continue to track him closely.

On Thursday morning, we met with the new GI doctor from Scott and White:
* Bennett had nine, count 'em, NINE dirty diapers on Tuesday in addition to some projectile vomiting on Monday and Tuesday.  So, we called on Wednesday to see if the doctor was concerned about C Diff.  The nurse called us back almost immediately and the doctor worked an appointment in for us the next day.  We were incredibly impressed with the efficiency of the process and the willingness to help us care for Bennett.
* The new GI doctor said he not concerned about C Diff, as long as we have a negative C Diff stool culture (which we had last week).  So, Bennett's issues do not seem related to C Diff.
* The new GI doc mentioned that Bennett could still have Salmonella (which he cultured a while back) or just simply have a GI system that struggles to stay balanced.  He encouraged me to monitor his symptoms but not get too worried about them.  It does help that Bennett had only two dirty diapers on Wednesday and Thursday, demonstrating that whatever bothered his system on Tuesday (with 9 diapers) did not continue to do so the following day.
* The new GI doc suggested that if Bennett continues to have diarrhea or an obsessive amount of diapers, he can Bennett a medication for his bowel hypermotility.  This would be something like an anti-laxative sort of medication.  Since Bennett is at risk for bowel obstructions, we want to use a hypermotility medication as the last resort.  The CF doctor would rather us not use one at all.  So we will wait for now.
* The new GI doc also offered to give Bennett an appetite stimulant if he continues to not want to eat.  We may use this option in the future.
* Overall, the new GI doctor was more than willing to do whatever he can to help us overcome some of these issues Bennett is having.  Most of all, he reassured us that while Bennett is on Vancomycin and having negative stool cultures, we can feel confident that Bennett is not suffering from C Diff.

On Thursday afternoon, we met with the new Pediatric Surgeon from Scott and White in Temple.
* The Pediatric Surgeon was very happy to see Bennett's rectal prolapse has not continued to be a problem since we left the hospital a few weeks ago.
* I explained that the CF doctor told me Monday that she is very hesitant to give Bennett surgery for rectal prolapse.  The Pediatric Surgeon said she agreed that it was best if we did not need to resort to surgery.  However, she also acknowledged that we must protect Bennett from losing his bowel in the future.  So, we agreed to table the surgery conversation for a time in the future and hope the rectal prolapse will resolves itself for now.
* The Pediatric Surgeon explained that Bennett did very well with the treatment they used in the hospital for his rectal prolapse.  She said their treatment plan of no food for 24 hours to promote bowel rest was very successful.  She indicated that if Bennett had a situation situation happen in the future, she would likely recommend we try this at home first to reduce the rectal prolapse.
* The Pediatric Surgeon mentioned that part of Bennett's hypermotility problem could be simply that he has less bowel than a child his age.  She said Bennett may struggle with hypermotility issues all his life.  This was good for us to know as Bennett's poops have never been "normal."

How nice is this?  Our CF Clinic offered to bring in some toys for the boys to play with as they wait.
Who knew they did that?

In other news,
The Pediatric Surgeon told me that she had called Bennett's GI doctor at Cooks three times to update him on Bennett's condition but that she never heard back from him.  She said she even paged him but did not get a response.  I was very very upset about this as I have repeatedly had problems getting the GI nurse at Cooks to call me back.  In fact, since Bennett came out of the hospital, I have left three messages that were not returned.  This tells me that either the Cook Hospital GI clinic is not doing their job and/or may be too overwhelmed with patients to be concerned about Bennett.

The Cooks CF doctor asked me why I was working with the team at Scott and White and recommended that I continue my care at Cooks simply because it's best when all of the doctors work within the same system but I did mention to her my frustrations with communication with the Cook GI Clinic.  We will meet with the GI doctor next week so I hope to confront him about this issue.  I'll be interested to hear what the Cooks GI Doctor has to say.


  1. Is Cook's big? I always wondered. I've never been over to that side. I would imagine their CF clinic compares to the Dallas one. Doctors, doctors, doctors all week! Tired of them yet? Wow... Good to hear that overall he is doing great!

  2. THanks for the updates! Hope Bennett continues to do better with fewer poops! The DVD player is Madeline's BEST friend. WE lug it everywhere!

  3. i certainly don't claim to know more than the docs, but one thing to think about it that being on a high dose of antibiotic, vanco in particular, can have a side effect of diarrhea, or sometimes pseudomembranous colitis. maybe the doc mention this? just a thought! love ya ;)

  4. Yay for clear lungs, a clear culture and clinic toys! Glad to hear Bennett's lungs are good and glad you're getting his tummy issues worked out. Thinking of you guys, always!


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