Tuesday, November 30, 2010

Reflux continued

The G-tube trial is officially over and we have reverted back to the GJ-tube.  Abby's reflux has reared it's ugly head again.

For about 4 months she seemed to be doing well with the G-tube feeds.  We were hopeful.  The past 3 months or so we've started seeing the tell tale signs of reflux discomfort... moaning, arching, gulping/swallowing, finger biting, bad breath and sleeplessness.  These are a few of the symptoms we've seen since Abby was tiny.

So back to the GJ-tube we go.

(At the hospital waiting for the procedure- listening to Elmo)

And to a new Gastroenterologist.

Our visit with this new doctor went very well.  He is a caring, personable and extremely knowledgeable guy!   As soon as we shook hands and started talking we knew it was a good fit.  First order of business was a significant increase in one of her reflux meds.   It's called Carafate and it really helps!  He more than tripled her dose, but explained that this is just a band aid for her problem.  It will help keep her more comfortable until we can get to the bottom of her reflux and understand what needs to be done.

He also described two different procedures that might be options for her.  The first is a repeat Nissen Fundoplication.  This is the surgery she had at 9 months old; this would be a re-do.  Potentially this could stop her reflux and allow G-tube feeds again.  He explained that some kids just can't be fed into their stomachs and they need a permanent J-tube.  This procedure is much more complicated and involves rearranging some of her small intestines.

Before we think any more about surgery Abby will have some testing done.  She is scheduled for a Gastric Emptying test on December 15th.  During this test they will put radioactive liquid into her G-tube  and watch what it does.  She will be lying on a table under a special scanner that will take pictures of her GI system.  If she refluxes it will show it.  They will also watch to see how long it takes her stomach to empty.  After this test we'll get to talk with the Gastroenterologist again and discuss the results.  He may order additional tests at this point.

We are so thankful for this new doctor.  Hope and relief for Abby are in sight!  She will struggle with reflux and GI issues for the rest of her life, but if we can help her be more comfortable and continue to receive good nutrition so she can grow and thrive, it will make all the difference in the world.

She has gained 1 lb since the beginning of summer which is good.  At feeding clinic this month she weighed 35.6 lbs!  This is good news, although our dietician wants her to get back on her growth curve.  She is the size of a healthy 4 year old.  I think she looks great!  We will start her on a higher calorie formula soon.  This will give her a boost without having to increase her intake... which is a challenge right now.

Thanks for all who have prayed for our little Abbers!

1 comment:

23 Weekers said...

Oh Patty, so sorry to hear about the G-tube troubles and reflux. Kinnick continues to have a lot of reflux problems that result in lung infections. Anytime they mention doing a new fundo, I just want to cry. Every since Kinnick's NEC in the NICU and the stomach surgery and then later Fundo, I can't bare to go through it again. We switched Kinnick to Elecare Vanilla and mix it the 30 cal/oz method. This has helped a bunch. I'm not sure if you've tried this one or not, but I'm glad we tried it. Carver doesn't seem to have troubles with reflux anymore, and we haven't had a lung infection since he came home from the NICU. Crazy because he was the last to come off the vent and we were told he may never come off it. We were told that his lungs were in really bad shape. HA! They're in pretty darn good shape. We had a lot of reflux problems in the beginning, but most seemed to be related to constipation. The daily miralax cured that for us. I sure hope things get better for Abby soon.