Three Years with a Feeding Tube

posted in: Apollo, Special Needs | 3

Three years ago today, on Hezekiah’s 8th birthday, Apollo had his feeding tube placed in his stomach. This came not even two months after his double aortic arch division.  Six weeks after we had been told his heart was repaired. Even the doctors were shocked that Apollo’s eating didn’t improve after his surgery.  Finally he was admitted to the hospital for five days so they could do a series of tests and get to the bottom of the issue.

When they finally looked, they found this:

compressed esophagus, double aortic arch, vascular ring, esophagus CT image, g-tube, tubie, tubefed,

That black line is his esophagus. You don’t need medical training to see the compression. We were so relieved to see this image and eager to hear what the doctors would say about fixing it. Only they told us they had no idea what was causing the compression and it couldn’t be fixed. One week later his     g-tube was placed. 

 

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When I first saw him post-surgery I worried we had made a horrible mistake. The tube was much large then I envisioned and very painful. Not only that, but there was 8 inches of tubing hanging out that would remain there until he had his mic-key button placed four months later. I had a not-quite-two-year-old with 8 inches of tubing hanging from his body. We were told explicitly that if it got pulled out, we had to rush the hospital for emergency surgery. I don’t think I fully relaxed the entire four months. I had visions of it getting caught on the couch, playground equipment, you name it. Potty training was out of the question as the tube got in the way and he developed chronic, explosive diarrhea that lasted for months. During this time I would pack 4-5 gallon sized Ziplock bags with a diaper and full change of clothes just to leave the house. Apollo was being fed four times a day, so I also carried: a feeding pump, cans of formula, feeding backs, syringes and more.

He dealt with infection after infection after his g-tube was placed. 

toddler being fed through feeding tube

We adjusted to our new life, but it wasn’t easy on any of us.

 

Hiking will being tube fed

We took Apollo hiking

 

How to manage tube feeding on a camping trip

and camping

child being tube fed at the beach

and to the beach.

Once the feeding tube was placed, he quit eating by mouth almost entirely. Chuck and I were determined that he not lose that skill, so we worked and worked to make sure he got a few bites of food in his mouth each day. Potato chips for breakfast? Perfect! M&M’s for lunch? You got it. We did everything we could to keep him eating something; anything.

Apollo made  the Yahoo News when we were delayed by the TSA and missed our flight to San Diego due to carrying formula on the plane.

We experienced a  horrible day when his g-tube fell out after a resident removed the water but insisted it was “fine”. Thirty minutes later he had a hole in his belly and no g-tube in sight.

Finally last summer he had a g-tube revision to removed a build of granulation tissue that was so large it didn’t allow his tube to sit properly. 

It has been a long, long road. 

While the tube was originally placed due to the compression in his esophagus, even having that removed in October 2012 wasn’t enough. Apollo spent six months in feeding therapy and made little to no progress. So far the thing that has made the biggest difference in Apollo’s eating was his tonsillectomy last August. After that surgery, for the first time ever, he was able to eat bread products like muffins, cookies and sandwiches!

 

So here we are, three years later.  Apollo now gets tube fed every night after he falls asleep. I am still hoping, hoping to be rid of the mixed blessing of the feeding tube soon.

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3 Responses

  1. Blessings to you all. What a long road.

  2. Happy Birthday Hezekiah!

  3. Lomasluv

    He is so sweet. I really hope it gets better soon.

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