Monday, February 9, 2015

Feeding Tube Awareness Week

Parents of tube-fed kids usually have a love/hate relationship with their child's tube.  More love than hate from me, though.  We all wish our kids didn't need it (uh...how nice would it be to have a kid who can stay healthy without daily medical intervention???) but we're so glad the tube is an option!  It keeps them alive!

So for Feeding Tube Awareness Week this year, I'd like to share some of the things we love about that little piece of silicone that happens to save our kids on a daily basis!

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I can give him medicine without hearing him whine.  I can also give him medicine while he's asleep!  You know how when your kid has a high fever and you have to alternate tylenol and motrin every four hours?  Never mind what time he goes to bed, I can continue to give him medicine to keep his fever down without interrupting his slumber!
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I can keep him hydrated while sick.  You know when your kid can't keep anything down, and it's all you can do to make sure they eat popsicles, or a tiny bit of electrolyte drink every hour?  Well, I can just put Caleb on his feeding pump and set it to deliver gatorade or pedialyte at 20ml/hour, or whatever speed he's able to handle without throwing it up.  It's pretty darn handy.  In fact, at this very moment he's set to get 300ml at a rate of 80ml/hour because he has a cold and whenever he coughs with too much food in his tummy, he throws up.  He used to need IV fluids whenever he got sick, but in the almost 4 years that he's had his tube he has only needed an IV for sickness once!  And that was because his blood sugar was doing some wonky things after a day of puking, even though he was able to keep down 20ml/hour of gatorade for an entire night before going to the ER.
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I love that we can make sure he gets exactly the nutrients that he needs.  I've heard so many people lament that their kid will only eat hot dogs, pb&j, or quesadillas.  No veggies?  No problem.  I can rest easy knowing that he "eats" more healthy than pretty much any other kid his age.  Even though he is a veggie fan.  ;)
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Got a gassy baby?  No problem.  Just hook him up and burp him!  It's called "venting" and it's an easy way to get the air out of the tummy.
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You know how feeding a kid is a big production with all the mess involved?  You've got to do all sorts of dishes, wipe down the table, sweep the floor, wipe the kid's face, and sometimes even change the kid's clothes?  Not with a tube!  Unless the syringe disconnects unexpectedly and you spill formula all over (it happens), or the tubing disconnects while they're sleeping and instead of feeding the kid you feed the bed (it happens, and it's why Caleb's bed will always have a mattress protector)...but other than those instances, it's pretty mess-free!  All you have to clean afterwards is a tube and a syringe.  Not bad at all!
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When your kid is about to toss their cookies and they just look so uncomfortable...if you can work fast, instead of sending him to the bathroom to hurl, just hook up the tube and syringe and vent him.  You'll get his stomach contents out through his tube instead of letting them come up and out of his mouth.  It's so much more comfortable.  Just imagine needing to throw up, and not having to feel the discomfort of actually throwing up.  Amazing.
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Road trips are so much easier when you can tube feed your kid.  Imagine there's a long stretch where there aren't any fast food places (not that there are any fast food places where we can feed Caleb, anyway because of his food restrictions.  Only Chick-fil-a, which needs to expand across the country!).  Just hook him up on schedule and feed him.  Easy peasy.
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Well, right there is a pretty good list of reasons why it's awesome to have a kid with a feeding tube.  There are a million reasons why kids need feeding tubes--some aspirate food and drink into their lungs, causing recurrent pneumonia; some have severe oral aversions; some have low muscle tone; some have problems digesting; some have anatomical problems, like esophageal stricture or short gut syndrome; some are too weak to eat enough (like babies with congenital heart disease, or other organ failure); some need to go on a special formula and refuse to drink it by mouth because it's pretty yucky tasting (like Caleb); etc--and there's not a single parent alive who doesn't wish their kid didn't need a tube.  It's commonly believed that a kid won't starve himself.  To that I say, a healthy kid won't starve himself.  And we all want healthy kids.  For us, using a tube to feed Caleb is the best way to keep him healthy, despite his disease and special diet.  So instead of hating our circumstance, I choose to see the silver linings.  It's pretty awesome that we can use a tube to keep Caleb alive and thriving.  And it's pretty awesome that we can use it to help him burp, too.  ;)

Happy Feeding Tube Awareness Week!

This is Caleb with an OG (orogastric) feeding tube at a few days old.

This is Caleb with an NG (nasogastric) feeding tube at almost five months old.

This is Caleb during his year of being tube-free.  He was about 15 months at the time.

This is Caleb with an NG tube for the second separate time in his life, around 18 months old.

Caleb with his g-tube (gastrostomy) at about 22 months old.

Caleb today, at 5 years 3 months, getting fed lunch with his g-tube.

2 comments:

Alice Anne said...

Caleb is such a rock star!

Rosanne said...

I love how positive you are about this! Thanks for showing what this is like, I have almost no idea about feeding tubes. Way to be a rockstar mama!