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Enema X-Ray

Wednesday, January 13, 2016

On Tuesday, the Pediatric Surgeon requested Bennett be given an enema x-ray.  The hope was that the doctor would be able to determine how much excess bowel Bennett has, to determine whether a bowel resection is in his best interest.

The test involved placing cold contrast fluid through the rectum into the colon in order to take a picture of his bowels.

I'll spare any other details other than to say that an enema x-ray is one of the most uncomfortable and unpleasant experiences to have to endure.  Despite the pediatric radiology team's greatest effort to make him comfortable and to give him a sense of dignity, it was a pretty terrible test to have to go through. Bennett did it with such bravery.


I was thankful for the iPad that they offered him to use during the test.  I was also thankful for the way the front desk staff was willing to play with Avonlea for 20 minutes so I could be fully focused on Bennett.

But, it was a sad situation.  Bennett cried.  Bennett was scared.  Pushing of the fluid into his bowels made his abdomen hurt.  I tried to pretend like it was no big deal.  But I knew it was.  I had actually been through the same procedure with Bennett years ago when he was a toddler.  That time, it was traumatic for the both of us.

Thankfully, Bennett got through with this test like a champ.  He never kicked or screamed, something he later told me he was very proud of himself for.  The nurses were very kind to reward him with stickers, a prize and a cookie afterwards.

The Radiologist mentioned to me she didn't necessarily see a whole lot of excess bowel.  So, I don't know what they will end up doing.  I am still waiting on a call from the doctor once she's figured out her game plan.

I'm thankful we get a week and a half to prepare for surgery.  Although Bennett is excitedly counting down the days, I have needed the time to emotionally prepare.

I can't even express the kind of internal emotional toll it takes to go through this again and again - even when things go well in the end.  There is preparing the child, preparing the rest of the family, the informing the extended family, packing for the hospital, getting insurance pre-authorizations, meeting with the doctors, going over medicine lists, requesting modifications to the procedures, waiting for the surgery to be over, experiencing the child coming out of anesthesia, admitting to the hospital, meeting new nurses, preparing to sleep at the hospital, being woken up throughout the night...the list goes on and on.

And it's hard to hold it together on the outside in the best interest of my child, trying to "normalize" what he is going through...all the while desperately wanting nothing more than to scoop him up, rip off his hospital bracelet, knock down all the machines and push nurses out the way, in order to run as fast and far away as possible to safety.

What happens when that "safety" leads you back to the very place that felt unsafe in the first place?  I can't really whisk him out of this hospital.  He needs the hospital.  I can't really push the nurses out of the way.  We need the nurses.  That's the kind of purgatory experience living with a chronic disease and having to go through these experiences can feel like.

And parenting amidst all of this?  Oh, it just adds to the level of emotional angst.

As a parent, it's so easy to struggle with knowing if what I'm doing is good and right.  I don't know how to raise kids (never done it before!) and I don't know how to raise a kid with CF (never done that before, either!).  But I feel the weight and know the cost of being successful (or unsuccessful) of both.

Bennett told me at bedtime last night that on Tuesday, when I was trying to distract him with the iPad while he undergoing his enema x-ray, that he didn't really want to see the iPad.  He ever so gently shared with me that "mom, the way you tried to help me the other day reeeeallly wasn't that helpful."

I greatly appreciated his bringing up the topic because my immediate response was, "what could I have done to have helped you better during those moments?"

He said, "you could have held my hand and told me, 'it's going to be alright.'"

Darn.

I really wish I could have known that because that's exactly what I would have done.

It can feel like a parenting fail when I forget to send my child to school on the coldest day of the year without his coat.  But learning that I didn't support my son in the way he had wanted while he underwent an invasive test in preparation for surgery brings feelings of parenting failure to a whole other level.

Nobody teaches you how to be a parent to a child with a chronic disease or to a child who is going to undergo multiple surgeries and procedures.  Nobody says, "this is how you comfort your kid when they on an the x-ray table experiencing an enema." Nobody says, "this is how you prepare your child to go in to his 7th surgery."

Thankfully, Bennett is a patient teacher who is gently guiding me along the way.  I am confident that, over time, he, Brian and I will learn together how to cope with these new challenges as they arise.

And if we don't...it's good to know there is always therapy. :)

4 Responses to “Enema X-Ray”

  1. Oh friend, my heart aches for you right now. I'm praying that the enemy would have NO foothold in an already difficult situation. YOU are the perfect mom for Bennett. You are doing an amazing job...and it will never look perfect. I'm constantly blown away by your love for your children and how you fight fiercely for them...and then how you can word it all so beautifully on your blog to encourage others in the same fight. Praying against lies and doubt and instead for truth, peace beyond understanding, encouragement, strength - that you would feel loved and lifted up. Love you so friend!!

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  2. Oh friend, I just read this post. You are a fantastic mom, and what Bennett needs emotionally will differ every time I imagine. I love you and you are doing an amazing job! Hugs and tears!

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  3. Breck - tears are filling my eyes, making it difficult to read your beautifully written words. You are an incredible woman and mother to your three precious children, and I am in awe of your strength during these difficult days. I am so sad to hear that Bennett has to have yet another surgery. My heart breaks for you. Hugs and love to your whole family.

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  4. You are such a wonderful mom! I'm sorry you guys have to go through all this but Bennett is so lucky to have you

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