12 More Days!

GI follow up this morning. Ryan and I had already discussed that I was going to insist that we needed to be DONE with the NG tube ASAP. After last week’s fiasco in Savannah, our love-hate relationship with the NG is leaning more towards the hate side. We knew the probable next step is the G-tube, but I was expecting more resistance and “let’s wait and see” attitude from the doctor. I was prepared to be pushy and insistent (soooo not me at all) that the NG has to go.

Turns out, I didn’t have to be pushy at all. My conversation with the nurse:

“So how’s the NG going?”

“Well, it’s doing it’s job, but driving us nuts.”

“So you’re ready for the button?”


“Ok, let’s schedule surgery.”

Ummm…ok. Thank you for letting me be my sweet, non-agressive self and save my energy for saving my squirmy, fussy baby from falling off the exam table.

I talked to the doctor for a long time, and he explained the procedure in detail. Grayson will have the initial surgery with a hospital stay of at least one night, then 6 weeks later, when the tube site has healed, he will have another out-patient procedure to get the button.

In his physical exam of Grayson, he commented that his liver seemed a little low and large. (Me: amazed that he can feel the size and location of his liver by poking around his tummy. Doctors are so cool when they aren’t being annoying.) Now this information of course made me a tad panicky…what? We have a liver problem now? Sheesh. Well, apparently, large livers are common in kids with mitochondrial disease. The funniest thing was the doctor pulled out his wallet and rummaged around until he found his liver ruler (so where do you keep your liver ruler? Did you know there was even such a thing?) and measured it. He didn’t seem too concerned, but did order a blood draw to test his liver enzymes. So once we left his office, we schlepped downstairs so my little pincushion could be stuck again. My new line for blood people: “Are you good with little ones? ‘Cause he’s a hard-stick.” Look at me, I have a line. Now, don’t ask me what I would do if I ever get “No” for an answer to that question. Thankfully, this one was honest and got his vein on the first try. I made sure she knew I thought she was awesome.

We left the appointment with a surgery date of December 29. Seriously, we have another MONTH with the NG? Gah. The nurse promised she would call me if another date opened up.

Two hours later, I had a voicemail- December 12 just became available! So 12 more days and I’ll be able to kiss those sweet cheeks again, sans tape and tube!

Now, don’t read this thinking I am excited that Grayson is having surgery. I’m not. If I could, I would feed him macaroni and cheese, chicken nuggets, fruit pieces, or whatever else is normal for 14 month olds to dine on. What a lot of people don’t understand about kids who have feeding tubes is it’s not just a matter of finding foods they like and thinking then they will magically start eating. If it was that easy, no kid would be on a tube. Grayson needs nutrition, and he needs it consistently. The best way for him to grow and thrive right now is to be tube fed. So because a feeding tube is our best way of getting G nutrition, I am thrilled he is getting a G-tube and getting rid of the NG.

And as always, thank you all for your continued support of our family on this crazy, unexpected journey.


  1. Nancy on December 1, 2011 at 1:21 am

    You are HILARIOUS!!! I read your blog as much to be entertained as to read about our munchkin Grayson! But wondering, what does he do between surgery and the button? Can he get tummy-fed before the button?

  2. Sweet B's Mom on December 1, 2011 at 2:26 am

    B and Grayson can be g-tube boyfriend/girlfriend!That's exactly how I felt when she had the NG. Get that thing out and give me the G!!!The surgery is easy and it will be a breeze. It's scary to have him go under, but they are so good at it and you will be sooooo relieved. And no more tape on those cheeks!

  3. Sarah on December 1, 2011 at 2:31 am

    I'm glad you've found a doctor that is working with you to make progress. And only you could make me giggle in the middle of such a post. I love your writing!

  4. Erin on December 1, 2011 at 3:09 am

    You really are a gifted writer. So glad they were great today and you did not have to push. Glad you will get those kissable cheeks back!!!

  5. michele on December 1, 2011 at 3:40 am

    YES!!! What awesome news! Dec. 12 is so close …..

  6. Anonymous on December 1, 2011 at 3:56 pm

    That button has advantages- sort of twisted but it does! ūüôā He can join the button club!- Bridget

  7. babyfoodsteps on December 2, 2011 at 3:10 am

    Hugs and Blessings…. so glad he will still get the nutrition he needs now and you will get a well needed break from visiting ER rooms across the country! You are an amazing mom, Elizabeth and I am so thrilled that our paths have crossed!Hugs to G-Man and the 12th will be here before you know it!

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