18 May 2016

Bennett's Endoscopy/Colonoscopy

Early this morning, Bennett was admitted to Children's Medical Center in Dallas for a endoscopy and colonoscopy.  These tests were to explore what might be causing Bennett's concerning GI symptoms and to investigate concerns Bennett might be dealing with an additional diagnosis, Crohn's disease.

Of course, for anyone who has endured a colonoscopy, the worst part is not being put under for surgery but not being allowed to eat the day/s prior.

The colon cleanout prep we were given started on Monday night at 8pm with a suppository.  Then, on Tuesday, Bennett was allowed nothing but clear liquids.  By Tuesday afternoon, he had to begin drinking 6 glasses of Gatorade with 1 capful of Miralax each.  The day, full of not eating, ended with an evening suppository.

I struggled to figure out how to make this as painless as possible for Bennett.  Brian and I agreed he would be best to send Bennett to school as it would allow for plenty of distractions and the minimization of food.

I picked up a new Star Wars spoon for Bennett at Target, with which to eat his Jello, and a new Star Wars water bottle, in which he could drink his clear liquids.  

Recently I have become aware of how much Bennett loves looking forward to things.  He asks all the time when he can get a new toy (to which my reply is often "on your birthday" and "at Christmas").

So, once I knew he was going to have to go back to the hospital, I told him to start thinking about which toy he wanted so he could pick it out.

We decided to try to help mitigate Bennett's anxiety about not eating and having to go back to the hospital by helping him anticipate a toy he really wanted.

Parenting confession: It's really hard to parent in a non-consumeristic way when your child has a chronic disease and is constantly being poked and prodded.  Toys and treats are easy rewards for frequent requests for patient compliance.  But, I do try to minimize randomly buying things as much as possible to save his interest in toys and treats for situations such as these.   

Since we had to be at the hospital so early in the morning, Bennett and I stayed at my sister's house in Dallas.  I am thankful for her extra set of hands and support since Brian needed to stay behind with Oliver and Avonlea.

Bennett did a really great job with the "colon clean out."  It was hard but he did it.

He also did well during admitting for his surgical procedure.  We were all thankful when it was over. 

After the 1 hour procedure, the GI doctor met with me to tell me what she found.  Basically the doctor had good news and bad news:

The good news is that upon exploration, the GI doctor was able to better understand Bennett's anatomy to realize that part of the reason his Small Bowel Follow-Through test showed he is dealing with gastric emptying is because part of his colon has been removed (generally the area between #6 and #8 in the picture above).  

I'll be honest, I don't know enough about Bennett's colon to well explain his anatomy but I can at least explain that Bennett has had several colectomies in his life (removal of small parts of the colon). 

According to the GI doc, the fact that part of his colon is missing likely explains why Bennett's food goes through his body faster than normal.  The doctor said that at some point she would like to add some over the counter medicines to his daily regimen to improve this issue.

The bad news is that the GI doctor may have found the reason for Bennett's troubles and, unfortunately, it's going to require more surgical procedures to resolve it.

What the doctor found is called an intestinal stricture.  A stricture is a narrowing of the intestine due to scar tissue or inflammation that risks the slowing of bowel movements or blocking them all together.

Bennett's stricture is severe.  He has only a 6mm hole with which poop can flow.

How big is that, you ask?  The picture above shows 2 inches.  Can you find 6mm?  That's how tight the stricture is closing in Bennett's intestine.

The GI doctor believes this stricture is what has caused Bennett's rectal pain at times and why he is going to the bathroom all the time. She thinks Bennett can't physically empty his bowels because the hole through which the poop must go doesn't allow him to do that all at once.

Picture found at

To address this issue, Bennett's GI doc is first going to discuss this issue with Bennett's surgeon at Scott and White as well as with other surgeons at Children's Medical Center in Dallas.

But, unless there is a change in protocol, Bennett's GI doc suggests the next course of action will be to use a series of dilation balloons to slowly stretch open the stricture over time.

In order to stretch the area appropriately, Bennett will need to undergo this dialation procedure (under anesthesia) every 2-4 weeks for about 6 months until the area is big enough to allow Bennett to have bowel movements normally.

If this doesn't address it, we will be forced to go back through surgery.

As far as Crohn's goes, the GI doc, from her perspective, feels like the biopsy is likely to come back negative as everything looked good to the naked eye when she was doing the colonoscopy.  In addition, she believes we now have all the answers to why Bennett has had so many problems.

However, we won't know for sure until the biopsy results come back.

What is interesting is that intestinal strictures are common in Crohn's.  So, I dunno.  Is the stricture from inflammation and scar tissue from previous intestinal surgeries?  Or is it one more symptom of underlying Inflammatory Bowel Disease?  Hopefully we will know soon.

Either way, Bennett will be headed back to the OR in the coming weeks.  :::sigh:::

Can somebody let us off this roller coaster??

10 May 2016

Abnormal Tests Lead to More Tests

Last Tuesday, Bennett underwent several tests to investigate whether or not he is dealing with something more than cystic fibrosis when it comes to his gastrointestinal health.  

After having a series of interactions with a variety of people since his surgery in February, I have become more and more concerned that Bennett might be suffering from Inflammatory Bowel Disease.

Thankfully, Bennett's GI doctor took my concerns seriously and agreed further testing would be valuable.  

The first test that Bennett underwent is called a Small Bowel Follow Through (SBFT). During the SBFT, Bennett was given barium in his g-tube and then given a series of x-rays throughout the day (about every 30 minutes/1 hour) until the barium made it's way from the stomach all the way to the rectum.  

The goal of the SBFT was to figure out how long it takes food to go through Bennett's body and to catch any irregularities in his bowel.  

Bennett's results from the SBFT showed food is actually going through Bennett's body too rapidly, making him need to go to the bathroom more often than he should need to go.  In addition, the SBFT showered there are irregularities in Bennett's bowel that need to be further investigated.

In fact, the Radiologist commented on Bennett's Small Bowel Follow Through test: "The transverse colon and sigmoid colon segments appear abnormal as discussed above...areas of involvement due to inflammatory bowel disease cannot be excluded." 

The second test Bennett underwent is called a Fecal Calprotectin test.  This test was to investigate whether or not Bennett is dealing with used to detect inflammation in the intestines.

Unfortunately, we learned last Tuesday this test also came back as "abnormal."  
So what's our plan?

Since we cannot rule out that Bennett is dealing with Inflammatory Bowel Disease (IBD), Bennett's GI doctor has ordered an endoscopy and colonoscopy.  Therefore, Bennett will be admitted for this outpatient procedure next Wednesday, May 18th.

During his scope, Bennett's GI doctor will take a biopsy from his bowel in order to better identify whether or not Bennett is dealing with IBD/Crohn's Disease.

We are surprised by the results of the tests and are certainly nervous about the upcoming scope as we hope the results show Bennett is not dealing with IBD (people with CF are 17X more likely to deal with Crohn's Disease than the general public).

Hopefully, the biopsy will back clear and we can investigate other possible causes of his gastrointestinal inflammation.

But, if he is, we will deal with it just as we have everything else - one breath at a time.

05 May 2016

From Flower Girl to Fundraiser

Several months ago, my sweet cousin Megan, who works at Kendra Scott contacted me about holding a Cystic Fibrosis Foundation fundraiser in Dallas in honor of Bennett.  I was so grateful for her thoughtfulness so eagerly accepted her offer! 

Megan holds a very special place in my heart.  She, along with her younger sister, Kendal, were flower girls in Brian's and my wedding back in 2004.  

Actually, scratch that, Megan was supposed to be there flower girl in our wedding and her little sister was supposed to be the bell ringer.  

Shortly before the wedding, Megan's little sister got scared at the thought of having to ring a bell down the aisle and announcing, "the Bride is coming!"  So, big sister Megan happily switched roles with her.

These little sisters were by far the best part of our wedding!  It's hard to believe Brian and I just celebrated our 12th wedding anniversary.  Once eight-year old Megan is now well in to college.  

Megan (on the left) might not be a little girl any more but she's no less brave or willing to step up when there's a need. This is why I was so touched by her desire to help us raise money for a cure for Bennett this year.  Not only did she advocate her boss, Jenn (on the right) to throw this special Kendra Scott event for us but she did so in such a way that a lot of money was raised within 3 hours for the Cystic Fibrosis Foundation in honor of Bennett: $1695!!!!!!!!

Kendra Scott stores are the best.  They are such delightful places to visit.  The color bar is pure eye candy.

The night we attended the Kendra Scott Plano store event, it was bustling with people.  Kendra Scott offers so many simple pieces of beautiful jewelry.  The company was begun by a woman and is based out of Austin, TX.  So, needless to say, ladies in Texas love their KS.

These are just some of the pieces I fell in love with.  The jewels are so fun!  Avonlea and I were equally delighting in all the sparkles! :)

Of course, one of my favorite sparkles showed up right before we left for the night.  My sweet friend and Univ of Missouri Kappa Delta sister Megan came after work to support Bennett.  Megan, who lives in Dallas, has been at every one of our Kendra Scott parties to support Bennett.  What a gem she is!  And what is special about Megan, beyond that her heart is one of gold, is that she and I share a lot of sweet friends in common who live too far away to be able to physically be at Bennett's fundraisers.  But Megan does such an amazing thing for me, she constantly reminds me that she is representing all of them and brings them with her in spirit.  Megan is currently pregnant with her first, a baby girl, so it won't be long before Megan and mini-Megan will be shopping Kendra Scott together! :)

The kids did really great at the party.  They ate up a couple of the cupcakes and then went outside the store to play on the sidewalk.  Apparently, at one point in the evening, Oliver approached one of the customers who was buying something and said, "You know, when you buy that, you are helping to find a cure for my brother."  Then, according to the store clerk, Oliver brought Bennett over to the customer to see and said, "see, this is my brother Bennett.  He has cystic fibrosis.  You are helping him"  The customer, a middle aged woman, seemed touched.  As she finished up her purchase, she smiled and said to me, "I hope he feels better soon."  It was a really special night for our entire family, for which I am thankful.

Megan, thank you (and Kendal) for bringing joy to our wedding day...

...and thank you, your family (pictured) and each of your co-workers for loving and supporting our now-family-of-5 in the midst of Bennett's battle against cystic fibrosis!!  We love you!!