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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