Totally Tubular

I once read a blog post (some recipe, I don’t remember what it was) in which the author used the phrase “totally tubular” at least three times.  When I say “I once read,” I don’t mean back in 1989.  I mean just a few months ago, in early 2017.  I just…. I mean…….. *sigh*

But now, I have a reason to write about tubes!  That’s right, meet the blogosphere’s newest tubie! IMG_2414

That’s right, I’m writing this from Riley Children’s Hospital, because my little Mega Man just got his NG-tube placed today.  He is less than thrilled.  In truth, he is doing very well with it.  But having a rubber tube shoved into your nose and down your esophagus is enough to make anyone a little irritated.  He has been a champ today, though.

Pregame, he was all fired up.  He was having the time of his life running around the hospital.  You can see from the pictures why he needs this, though.  At almost two and a half, he is still barely 20 pounds.  Unlike most kid labeled “failure to thrive,” he is incredibly active, which makes it even harder for him to gain weight.  The hope is that this feeding tube will help him get the nutrients he needs to actually grow (since he refuses most of the foods we give him – yes, even the amazing, allergy-safe foods on this blog get the snub sometimes).

IMG_2411As you can see, post-op he was a little less energetic.  He hates having those things on his arms, but it’s the best way to keep him from pulling out his IV and his tube. Having the left one on his arm a year ago is how he got his nickname Mega Man.  True story.

IMG_2416He started getting a little more energy as the afternoon went on.  We went for several walks, and he insisted on pushing his on IV cart around. He ate a popsicle or two, played cars with Grandma and Poppa, then watched some Mickey Mouse Clubhouse before finally drifting off.

I said it not too long ago… I don’t have all the answers. I’m not sure where this tube journey is going to take us.  I know many people who have been down this road, but it is uncharted territory for us.  Michelle and I worry that he’ll pull his tube out as we are driving down the street.  That he’ll pull it out in his sleep.  That the tape that hold it in place causes irritation beyond what he can bear. We wonder how the next month will go, and then what happens after that. We will keep trying to get him to eat and grow, and we will keep sharing that journey here.  Thank you so much for joining us.


5 Comments Add yours

  1. Roda says:

    You are such a strong family! Keeping you in my thoughts and prayers…💚

    Liked by 1 person

    1. Thank you, Roda! We really appreciate it!

      Liked by 1 person

  2. Roberta says:

    God bless you guys!

    Liked by 1 person

  3. Rebekah Rodgers says:

    Praying for you and your sweet family!

    Liked by 1 person

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