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Sigmoidoscopy with Dilation - Numero Tres

Saturday, July 23, 2016

I wonder if this is the way people in the military feel when they deploy, return home, and deploy again.

In many ways, life with a chronic disease is nothing like military life.  Deployed military personnel have far greater challenges than we do on a regular basis, which is why these ongoing hospitalizations give me even more respect for what they have to deal with when it comes to living two separate lives.

There is a rhythm to life, both life in the hospital and life outside of it.  But those rhythms are very different. This every-three-weeks dip into "hospital life" is a shock to the system.  But we seem to adjust just in time for us to return back to "civilian life."

Bennett was admitted Thursday morning for his third sigmoidoscopy with dilation.  Everything went well.  During the procedure, the GI doc stretched Bennett's stricture from 12mm to 13.5mm (up from 6mm).  We have yet to see a huge decrease in the frequency of times Bennett has to go to the potty but that's also not a huge surprise since the hole is still pretty small.  We are all hoping we will see more success with following procedures.

The GI doc mentioned that, although she increased the size of the stricture to 13.5mm today, she was unable to place a 9-10mm catheter through the stricture.  She said that these things are not an exact science and sometimes it takes stretching a stricture pretty far before it stays opened to the size we want.  So, we aren't exactly sure how big the stricture is except that it's smaller than what we want it to be.

I am going to start trying to track Bennett's bowel movements now that we are back home.  It's hard when he's 6 year's old and it's summer.  He can't remember how many times he's pooped in a day and I can't focus enough, through the chaos of summertime, to remember myself.

Nonetheless, Bennett's next procedure will take place in 3 weeks.  The GI doc hopes she can stretch the stricture to 15mm.  After that procedure, we are looking at another procedure to stretch it to a size 18mm.  The pediatric surgeon will likely be involved during that effort.

It's hard to believe we have more procedures to go.  On one hand, these procedures couldn't go any better.  Our doctor is fabulous.  Bennett's body is responding.  Bennett is not in pain. We aren't having to be admitted more than one night.

On the other hand, these procedures are wearying.  Hospitalizations are inconvenient and interrupt our family life.  Bennett is tired of going through all of this stuff.  He wants to stop having to be poked and prodded. Giving your child miralax and enemas over and over again to prepare for surgery really sucks.  Bennett is tired of having to go without food to prepare for anesthesia.

Bennett and I (and Brian and the kids back home) are all focused on making the best of these situations.  We are tremendously blessed.  But sometimes...

I just stand in the hallway of this hospital, see myself in third person - beige walls surrounding me, cold white tile under my feet, the air filled with sounds of beeping machines and quiet chatter of hospital staff - and I wonder:

"how in the world did I get here??"

How did I get to the point where I know hospitals so well?
How did I get to the point where I no longer get nervous when Bennett is in surgery?
How did I get to the point where "going to the OR" feels as straightforward as showing up for piano lessons?

"Ya'll are both so relaxed," the Pre-Op nurse said to me off-handedly yesterday.  I looked at Bennett, who was peacefully grinning ear to ear from all of the "loopy" medicine that he received in preparation for his procedure.  I wasn't sure why she had used the word "ya'll".  I asked curiously, "we are??"  She replied, "oh yeah, you're so casual.  You say, 'yeah, we can do this or, we can do that' like it's no big deal."

Yes, she was right.  I was feeling very laid-back.  I am confident in Bennett's OR team and confident in his ability to tolerate the procedure.  But my confidence ultimately comes from the fact we've been here before...many times.  I might even feel a bit resigned.  Not much point in getting stressed.

I'm very ready for these procedures to be done.  I'm ready to stop the deployments.  I want to stay in civilian life.

But, while we're here, deployed to a place we do not call home, it's so great to have friends visit us in the trenches?

Thank you to our friends Lani and Roy who came Thursday night to play games with us and who brought goodies with them.  We were really glad Bennett felt so good.


We were also excited to be able to see our friend Megan who lives in Dallas and brought her new baby, Maren, to visit us right before we left to go back home.

As we were leaving the hospital, my new friend Katie, a mom of a child with a chronic disease, came and found me at the hospital to drop off some extra supplies her son doesn't need anymore.  Thank you Katie for sharing valuable g-tube supplies ya'll don't need anymore!

And thank you to all of our friends back home and far away who sent messages of love while Bennett was in surgery and in recovery.

While our time away was made sweeter by friends, my greatest motivation to make it home from this most recent hospitalization was to take Avonlea and the boys to see Beauty and the Beast on stage at the Waco Civic Theatre.  Thankfully, we made it in time.


It made my heart so happy to see Avonlea's face when she saw Belle on stage for the first time.  I loved hearing Bennett cackle when Gaston threw LeFou through the air.  I loved holding Oliver's hand during the songs.

Switching between hospital-life and home-life over and over again is challenging.  But, doing so only makes special little moments like these that much more meaningful.

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