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Biopsy results & addressing the stricture

Saturday, June 4, 2016

It's taken more than two weeks, 4 emails, two phone calls and the coordination of one GI doc and two pediatric surgeons at two different hospital systems but we finally have Bennett's test results and a plan to move forward!

I've delayed on blogging for a while.  Part of it has been because we've had a lot going on here: Bennett's CF Walks around the country, Bennett's graduation from kindergarten and a week-long trip to Missouri.  But I've also put a pause on blogging for a short bit because I just needed some "not CF" time - time to just forget about CF for a while - willful denial, if you will.  Sometimes, when I feel like I'm swimming in CF, I just have to step out of the pool, dry off and then choose to get back in.
We head back in to the pool in a week and a half.  Here's the update:



1.) Bennett's Biopsy Results came back NORMAL indicating he is not suffering from Crohn's disease.

This is what Bennett's GI doctor said about his biopsy results:

"I can tell you Bennett does not have Crohns today – biopsies are considered gold standard.  But they only assess a point in time.  So I don’t know if he will never have it – chances are low – it not common in CF."

2.) Bennett's testing from his colonoscopy showed he has mild lactase deficiency.  The GI doctor recommended that we remove dairy, try lactose-free products or Lactaid pills (since kids with CF get a lot of calories from diary) for a 2-4 week period to see if it makes any difference for Bennett.  His lactase deficiency might be causing his frequent urges to go to the bathroom and stomachaches.

3.) Bennett's pediatric surgeon believes his gastrointestinal stricture is most likely a complication from his last surgery.  Bennett's GI doc recently spoke with Bennett's pediatric surgeon about her findings of a stricture in his bowels during his colonoscopy.  Upon hearing this information, the pediatric surgeon indicated she believes it very likely may be his body's response from a staple she placed at the very top of his rectum during his last surgery when she took out almost a foot of his colon to address his chronic issues with rectal prolapse.

Although I'm bummed that we are likely dealing with a complication of a previous surgery, I am grateful that Bennett has been under such good surgical care at Baylor Scott and White in Temple with our pediatric doctor whom we love.  She has been meticulous, trusting, caring and, without a doubt, is one of the very best. Although I wish we didn't have to deal with this, I don't regret that we under went our last surgery. I know we did so fully as last resort.

I have great respect for the fact that surgical intervention is always traumatic to the body and, unfortunately, complications do and will, inevitably, happen.  I pray each time Bennett undergoes surgery or a procedure that God will protect him from harm.

Since there isn't anything we could have done to prevent where we are today, it reminds me to be thankful for each day.  We never know what decisions we make today might bring us tomorrow.

4.) Everyone agrees: Bennett's stricture needs to be addressed through balloon dilation, slowly and over time.

So, where do we go from here?  Bennett's GI doctor and pediatric surgeon both agree that Bennett's intestinal stricture needs to be address through balloon dilation.  The stricture, inflammation in the bowel, has created a very narrow opening in the intestine that needs to be slowly forced open.

Image found at: https://www.olympus-europa.com/medical/en/medical_systems/applications/gastroenterology_1/stricture_management/balloon_dilation.html

Surgery can also address is problem but it's better if we don't have to go the surgery route. Complications that must be considered include dilating the stricture too rapidly causing a bowel perforation or excessive bleeding.

Our GI doctor, who will do the procedure at Children's Medical Center in Dallas, has asked a pediatric surgeon in her hospital system to be in the OR when she does Bennett's balloon dilation in order to observe the stricture from a surgeon's point of view and to advise our GI doctor on next steps.

Personally, I feel really grateful to our GI doctor (who is the co-director of our Cystic Fibrosis Clinic) for choosing to be extra thoughtful and careful as she addresses this problem.  It makes me feel good that when Bennett's stricture is addressed for the first time in a few weeks that we'll have two sets of eyes - the eyes of both a GI doctor and pediatric surgeon able to look at it.  Although the GI doctor will do the procedure, should there be any problems, the pediatric surgeon will be there to address it.

Since our GI doctor is connected to our CF clinic at Children's Medical Center in Dallas, our favorite pediatric surgeon who is at Baylor Scott and White in Temple won't be able to be there.  But she indicated to our GI doctor that she wanted to be updated after the procedure and provided her cell phone number should she need to be called during the procedure.  Again, I cannot say enough how grateful I am to have good doctors, across two hospital systems, willing to work with each other to help care for my son.  Every time we undergo surgery, the more anxious I get.  So, this extra support is very reassuring.

The GI doctor shared with me that our pediatric surgeon at Baylor Scott and White in Temple asked that Bennett be kept 24 hours in the hospital for observation based on issues she saw during his last surgery with bleeding and due to the fact that we live so far away from the hospital.  I agreed to this extra precaution.

The reason we have continued to stay at Baylor Scott and White in Temple is because of the excellent care we have received, particularly from the pediatric surgery department.  So, it's hard to decide to move up to Children's in Dallas for this upcoming procedure.  But I think there is great benefit to being in the same hospital system as our CF clinic.  This should be a relatively minor outpatient procedure.  But with children with chronic diseases, and with children, like Bennett, who have had multiple surgeries, complications can be often and serious.  So, we plan to travel to Dallas for this procedure.

5.) Bennett's procedure, a sigmoidoscopy with dilation, is planned for early on June 14.  We will stay 24 hours for observation.

6.) Bennett's next procedure, likely 2-4 weeks later, will be determined by the doctors shortly after his procedure.  Until then, we'll just keep living up summer. :)

2 Responses to “Biopsy results & addressing the stricture”

  1. Thoughts and prayers with you all Breck.

    ReplyDelete
  2. So sorry that y'all have to have another procedure... but yes, our GI doctor is the best ever :-)

    ReplyDelete

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