Lerner…table for 2.

January 29, 2014 at 12:52 AM 2 comments

For about the last 4 months Eliana has been fed primarily through a feeding tube.  Specifically, it’s a nasojejunal (or NJ) tube that goes in a nostril, down the back of her throat through her esophagus, into and through her stomach and into the second part of her intestines (the jejunum).  Feeding through one of these tubes is kind of like when you laugh too hard and snort milk out of your nose, but in reverse.  And through a tiny silicone tube that’s attached to your face with wads of tape.

Eeeeew.

One of the biggest hassle of NJ tubes is that they have to be inserted in the hospital so the final location can be verified by X-ray.  Why does this matter?  Because every time the NJ tube gets dislocated – usually by a flailing baby annoyedly ripping at the aforementioned tape wads – it means a trip to the ER.  On average, those trips end up taking about 4 hours or so.  So as you can imagine, we’ve done our best to keep those freakin’ tubes in place.

Despite our best efforts and those of our home nurses, Eliana’s NJ tube has come out 6 times in the 3 months since she’s been home.  That’s 5 visits to the hospital just for tube replacement (#6 today was replaced differently – I’ll get to that in a moment), and just like other wacky things that have become routine it’s starting to just become a cost of doing business.  We’ve actually had the same nursing staff a couple of times, and we’ve got some of the ER procedures down to the point that it just feels like we’re walking in and saying “Lerner…table for 2.”

Today at work I got a text from Amy saying that the tube had spontaneously popped out around lunch time.  But this time the nurse replaced the NJ tube with an NG (nasogastric) tube that just goes right into the stomach and can be done at home.  Why?  Because on January 30 Eliana is scheduled  to be admitted to the hospital to have surgery that will place a gastric tube (G tube; sometimes referred to as a PEG tube or a button) that will go directly from her abdomen right into her stomach.  No more N means we’ll be rid of the tube in her nose, which will eliminate a lot of the irritation that she’s feeling right now.

So instead of a 2 foot yellow tube dangling out of her nose and taped to her face she’ll have a little port like the stem you use to blow up a beach ball hidden under her clothes.  And though it sounds a bit gross, if that little port ever comes loose – which it will – we can actually replace it here at the house.

Yay!  And double-yay!

Does this change anything about her overall condition?  No.  But overall quality of life – for her and us – should be soooooo much easier once this is in and we don’t have to worry about the taping and the poking and the placing and all that jazz.  So while I’m sure we’ll still have our fair share of emergency room visits for other things in the future, we’ll graciously give up the reserved table as soon as we can.  She’ll probably be in the hospital through the weekend, but if all goes well we will be able to report on the G tube around the beginning of next week.

PS:  As you might guess, we’ve had more than a few questions about her feeding tube and other tubes, which we’re more than happy to answer.  But we also know that not everyone feels comfortable asking questions.  Take a look at the Feeding Tube Awareness Foundation for some common “tubie” questions.  We’ve started wearing their “I heart a Tubie” bracelets to show support for our own little tubie.  Just sayin’…

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Insurance Rant We’re Baaaaack!

2 Comments Add your own

  • 1. Bubbe  |  January 29, 2014 at 4:23 PM

    Can’t wait for her to be rid of the tape on her face. She hates it so much. Now she will be able to really smile.

    Reply
  • […] (or so) emergency room visits (we’ve lost count) – including 2 caused by careless home nursing […]

    Reply

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