20 October 2011

Where's Your G-tube??

We had a scare this morning.

Oliver usually wakes up and gets ready for school before Bennett gets up in the morning.  In fact on Wednesdays, our babysitter Margaret usually arrives early enough to wake up Bennett so she can feed him while I take Oliver to school.

So, imagine my surprise when I hear Bennett's voice in the kitchen to which I hear Margaret ask, "Bennett, who got you up??"

When I realized Bennett was awake and Margaret didn't seem to know anything about it, I rushed out of the bedroom in hopes to hear the answer to Margaret's question. 

Oliver proudly announced, "I did!  I got Bennett up!"

I laughed and said, "well that's really great...but, Bennett, you're supposed to be tethered.  How did you get out?" 

Bennett is typically connected to his g-tube all night long as he is fed through his feeding pump.  We usually connect him to the tube at night and unconnect him in the morning.  Since he can't undo his tube, he can't physically get out of bed until we unhook him.

I didn't really want to know the answer to my question.  I had really hoped that maybe the mic-key extension had accidentally unhooked from his g-tube...or that maybe Brian had unhooked him.

But my greatest fear was realized when Margaret lifted up Bennett's shirt and we saw his g-tube was nowhere to be found.  (...which sounds familiar, huh??)

Since it's not uncommon for g-tubes to come out, I reacted immediately and tried to replace the g-tube.  But it was clear that it could not be put in.  The g-tube stoma (the g-tube opening) had already begun to close up, so tightly that his g-tube could not easily be replaced. 

I realized that the g-tube had probably fallen out hours ago, which meant that the area was healing incredibly quickly.  We have been told that g-tube sites can close within 4 hours.

I wasn't even fully dressed and had an appointment planned for the day.  But it didn't matter, I knew we were going to have to go to the ER.

We rushed to the ER and hoped the doctor there could put it back in.  But it was evident that he could not.  We were told that we needed to go asap 30 minutes away to meet with the Pediatric Surgeon on call.

So, we had to immediately get in the car and drive to Scott and White in Temple.  There, the Ped Surgeon had the correct materials to put Bennett's g-tube back in without requiring surgery.

Unfortunately, it was very painful.  But it got done and we are thrilled.

It was interesting seeing how the doctor dilated the stoma before putting the tube back in seeing as the opening in his tummy was closed shut.  The doctor could fit only a tiny wire into the stoma.  So, the Pediatric Surgeon first inserted that tiny wire.  Then, she placed a small plastic tube over the wire and inserted it into the stoma.  After that, she placed a slightly larger tube into the stoma.  Each time, the hole was made bigger and bigger until it was big enough for the g-tube.  Unfortunately, because the area was closed so tight, there was alot of blood and screaming (they didn't give any pain meds because they said they didn't think it would hurt...yeah, right).

My heart sank for our little guy.  I hated that he had to go through all of this for something so innocent as losing his g-tube.  It turns out (or what we suspect is) that, while sleeping the night before, Bennett moved to a certain spot in his bed where the feeding bag tubing got stuck between the mattress and his bed railing causing the g-tube to be yanked out while Bennett was asleep.  This likely happened when Bennett didn't know, which is why he did not cry. 

I hated that he had to go through all of this today.  But I was so thankful that my biggest fear, going under anesthesia for surgery, was not ultimately realized.

Still, I wanted to cry today.  I felt deeply frustrated and helpless by such a drastic turn in my day.  This has happened so many times before that it shouldn't have surprised me, or even bothered me, for that matter.  But it did bother me. 

I think it was hard because I have just recently begun to tell myself it's ok to start dreaming start getting involved in life, to start committing our family in activities, to start picking up my own passions again.  But today's curve ball felt like the rug was temporarily pulled out from underneath me.

It reminded me of the so many times before where we had been in this situation - needing to stop what we're doing and go to the ER, being admitted to the hospital suddenly, finding ourselves no longer in control of our life, at the mercy of Cystic Fibrosis complications.

I felt a sense of betrayal by God today...a feeling I haven't felt since the first months of Bennett's life.  I wanted to beg God to not make me do not make me care for a child with special needs.  "God, I don't want to do this...I don't want to go through this for the rest of Bennett's life."  I wanted to ask God to release me from the pain, tears and frustration of living at the whim of an incurable and devastating disease that is hurting my child.  "I can't bear to watch my child suffer."

But today, on the way home from Bennett's procedure, I was able to fall back on the memory of all of the amazing support our family has received over the last two years - from family members, friends and strangers alike - all who have shown us the love of God throughout this journey.  

Even this weekend, while on an impromptu trip to my Alma Mater, a sorority sister I haven't seen in years found me out of the crowd and gave me several big long hugs.  Her words: "I read your blog."  That's all she needed to say.  I could see it all in her eyes and feel it in her hugs.  Her empathy and tenderness was incredibly encouraging.  Little did I know how much I would need that encouragement only days later sitting in a treatment room waiting for my son's procedure to begin.

Today, I was reminded of the quote I once saw on a church sign:
God doesn't call people who are qualified. 
He calls people, and then He qualifies them. 

Cystic Fibrosis is a long road.  We're at the very beginning. 
But I choose to trust God in this journey, that He will continue to give me strength.

He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall;  but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  Isaiah 40:29-31

1 comment :

  1. I'm so sorry to hear you had to go through this. So glad Bennett could avoid surgery!


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