Oct 21 10
by cara
at 9:10 AM
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GI Update: Adjusting to Life with a G-tube

I can’t believe it has already been a month since The Littlest Apple had his g-tube placed!

I can’t believe it’s ONLY been a month since The Littlest Apple had his g-tube placed!

Things have been going great.  There was a HUGE learning curve going from no tube to NG tube and having to learn how to use the pump for overnight feeds, but it didn’t take us long at all to get the hang of the g-tube.

I can’t even begin to tell you how happy we all are to have the g-tube!  The particular variety The Littlest Apple has is the MIC-KEY button, which looks a lot like the air valve on an inflatable beach ball.  I’m not going to share pictures of The Littlest Apple’s button, but if you know us in real life and are curious, just ask!  We’ll be glad to show you how it works.

I’m not as concerned about the MIC-KEY getting pulled out by curious little hands, and no one even knows it’s there, unless we tell them!  I feel like this has allowed The Littlest Apple to be a “normal” little 3 year old again!

I am so SO glad we went ahead with the surgery, because I have a feeling we’re going to be dealing with tube feedings for quite some time.  While still in the hospital, a dietician told us that after the high calorie formula is taken into account, The Littlest Apple still needs an additional 430-500 calories by mouth each day.  And while that number doesn’t sound too unattainable,  The Littlest Apple struggles to even eat that much most days.  So I think we’ve got a LONG road ahead before The Littlest Apple will be able to consume enough calories to not need to tube feeds at night, unless he miraculously outgrows his gastroparesis.  We definitely did the right thing.

The Littlest Apple had his surgery follow up appointment last week, and he currently weighs 26 pounds!!  According to the surgeon, that places him FINALLY on the charts for weight at 4%.  (Yay!)  He’s continuing to gain weight, and even though he’s still wearing several shirts that fit him over a year ago, all of last year’s pants are definitely too short.  I think his height is around 36″.  He’s the tiniest (and youngest) child in his preschool class (they had to put a special step stool in the bathroom just for him!).

We attempted making our own blenderized meals for the tube feeds, using some recipes given to us by our dietician.  (One particular recipe included couscous, green peas, orange juice, milk, and several other things)    I like the idea of knowing every single thing that goes in to his meal instead of using a formula with lots of things I can’t pronounce.  However, we haven’t been able to blend it to a smooth enough consistency to prevent it from clogging.  I’ve always wanted a Blendtec or Vitamix, and I think if we’re going to make blenderized meals, that’s the kind we’ll need.  Kind of a splurge though, and we FINALLY got the formula covered by my husband’s new health insurance (instead of paying $300 every 6 weeks, we’re paying $45). But I’m still wondering if The Littlest Apple is sensitive to one of the ingredients in the formula.  If doing blenderized meals helped bring down his energy level, I’d say it was worth every penny!

One last note for any other g-tube mommies out there.  I just ordered some Button Buddies, and we LOVE them!  They are absorbent reusable little pads in cute patterns (we’ve got dogs, frogs, dinos, and a firetruck) that wrap around the g-tube site to help prevent and absorb leaks and keep the button a little more secure (which also helps to prevent granulation tissue).  We think they’re pretty great!

Our next GI appointment is the week of Thanksgiving, and we’ve got an appointment with the surgeon to change The Littlest Apple’s MIC-KEY in January (in office).  Do I even have to tell you how nice it is to NOT have to deal with tube changes for 4 months?!  Unless of course, it breaks or gets pulled out….hope I didn’t just jinx us!

My only regret about the g-tube is that we didn’t do it sooner!

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  1. Nate should be all over the Blendtec. If you get on, I have some things I would like to test:


  2. Mark,

    We LOVE the Will It Blend videos (even The Littlest Apple has seen them). It would be fun to have one, but the price is a little steep. I’m going to have to play the “medical necessity” card with The Picky Apple to convince him…that and “hey look! we can blend golf balls!”

  3. I am SO HAPPY things are going so well, Cara. It sounds like the Littlest Apple is really thriving! AWESOME!

  4. What a great sigh of relief for you all. I remember when you were unsure of the g-tube surgery and weighing the pros and cons. I’m so, so happy you’re happy with your decision – it definitely sounds like it was the best way to go!

    It’s wonderful that Finn’s preschool has included a little step stool for him – that’s a sign of a thoughtful teacher, imo!

    James is still wearing some shirts from last year and even the year before, believe it or not! The pants, however, are a bit short, but the waist is the same. (wish I could say the same for me!!!)

    Hugs to you, Cara, for being such a wonderful mommy and for sharing your stories with us.

  5. that is great all is going well now!!

    he weighs almost as much as Avery so they should hang out..he wouldnt be the smallest. she is 27.5 pounds and 36 inches! we are just in the 3% but they could be percentile buddies!

  6. Yay! I’m so happy to read that things are going so well. Button Buddies are awesome! As a mom of two g-tube toddlers (we also have MIC-KEY buttons) I am a huge fan of the AMT clamp to keep the adapter and the zevex bag tubes from separating because the boys are so active.

  7. Andrea Gaines permalink

    What exciting news that this has gone so smoothly for you. Lilly is coming up on one month for the NGT next week! Hard to believe. Fortunately she hasn’t tried to pull it out, but I hate to see all the tape and stuff on her face. Regardless, she has adjusted well to it and runs around like she doesn’t even have it. Little by little she seems to be gaining wt. I do have a question for you. Did the littlest apple ever have a hard
    time with diarrhea with his GP. We have recently found out that Lilly has small bowel bacterial overgrowth and is on Flagyl which doesn’t seem to be helping much. (we are almost at a week being on it.)
    I too have wondered if doing blenderized foods would be the way to go with her as well since she still has issues with many solid foods, and now with the NGT is even MORE cautious with what she will even TRY to put in her mouth.
    I am hoping that if we can see some decent improvement in her wt., that they will switch her to the GT or JT as well. I am so glad that is working well for you guys!

  8. That’s so awesome. I’m so happy for all! I can’t wait to see him.

  9. Adrienne permalink

    I was just looking at ordering a Vitamix today. They offer a reconditioned or slightly used 5200 model for $349. They also offer a 3 pay plan on the new models not sure about the used models. They also include a 7 year warranty on the used models. There are so many things you can do with it. If you have the dry blade you can even grind grains.

  10. Sara permalink

    My daughter was born with major digestive issues and had to have an extremely expensive formula (which was also a neverending battle with the insurance). I hated reading the label with all those mysterious ingredients and “corn syrup solids” as the main one. The day I was finally able to feed her some pureed carrots, I was in tears of joy. I know how great it feels to finally feed your kid “real food” and I hope you can find a way to make the blender thing work.

  11. Katy Livingston permalink

    On the charts?! Hallelujah! I am so happy the new tube is working out.

  12. Sarah,

    I know the pricey formulas get their “high calorie” status for a reason (namely, the corn syrup solids you mentioned), but I do wish there was a better way to get my child the high calories he needs in a more healthful, “real food” way. We’re going to give the blenderized meals a few more tries! What a happy day to feed your daughter carrots! Hope your daughter is doing well!

  13. Jennifer permalink

    I just found your blog yesterday, been reading all of your posts and updates about your little guy! I am so glad the g-tube is working for you. My daughter is going to be 2 next month and I am not sure what her future holds with her GP, but your blogs are giving me a bit of hope. Until yesterday, I thought we were alone. I have not found any other children with this, only adults… other than the few adults I have seen online there are not many people (including some dr’s) who really know what GP is. My husband and I are doing our best to keep her from getting the g-tube, trying to keep her as healthy as possible through purees and such… but I dont know now after reading your update on the littlest apples progress. Glad to hear he is doing well.

  14. Nicola Strandberg permalink

    Hey, just a quick question, I fed my little one blueberry soup thru his tube, and now i feel worried, I should have checked it out proppely first, is it ok to put real food in the tube??

  15. Cara permalink

    It IS okay to put real food in the tube, but just be sure to strain it through a fine mesh collander before using it. You also need to be sure to flush out the tubing with water afterwards. We definitely had more instances of tubey clogs when we were using blenderized meals. I’d also double check with your child’s doctor just to be sure it’s okay with them! Hope that helps!

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