Wednesday, June 15, 2011

Just When You Think You Are Out Of The Woods

Campbell saw her gastroenterologist yesterday.  She had lost about half a pound since last month.  She has been sick with a cold and ear infection, so I wasn't surprised that she hadn't gained weight.  But I was surprised that she had lost that much.

He then told me that he would schedule an appointment with the pediatric surgery team so they could discuss a g tube placement for her.

Um.  What?  She's been sick.  That's all.  She'll gain it back, I said.

He then produced her growth chart and told me that she falls far below the growth curve, and she's been leveling out over the last few months, rather than climbing.

He went on to explain more about the g tube, the pump, feedings in the night, etc.

I stared in disbelief.

She's just been sick.  She's better now, I said.

She needs the g tube, he said.  We've done everything we can to increase her calories.  We've given her enough time.

You really feel this is necessary??

I absolutely do, he said.  If we don't do this, then we run the risk of long term brain development problems.

I just couldn't believe what I was hearing.

Long term brain development.  Those words got my attention.

He told me the nurse would be in to schedule our surgical consult.  He left the room, and I sat holding my baby. 


She's been doing so great.  We've been seeing him for the past year, along with our feeding therapist.  And in that time, Campbell has made tremendous strides.  A year ago, she was fighting through her bottles and refusing anything on a spoon.  She actually enjoys eating now.  I mean, I recognize that she doesn't eat as much as her sister, but I feel like the pediasure and duocal should be making up the difference.

And her energy level is high.  I always say she is my cat napper.  Honestly she sleeps no more than 40 minutes at any given nap.  And she's always the first one up in the morning.  5:30 anyone?  She's been walking all over the place lately, and she's just a very active toddler. 

I made sure he knew all this. 

He just kept saying: she needs the g tube.

I left his office with 2 words on my mind:

Second.  Opinion.

I immediately called our pediatrician.  After all, he had referred us to this GI doc.  I wanted to pick his brain to see if there was anyone else he would recommend.

He suggested making a referral for Campbell to get an endocrinology consult in Peoria.  See if there is an underlying metabolic problem.

I was told it takes 48 hours to hear back from the endocrinologist's office, so we are waiting to hear.  If we can't get in soon, then we will be heading to Chicago Children's Memorial or St. Louis Children's Hospital for more answers.

We have a surgical consult scheduled for June 30.  Its the same surgeon who performed Lenay's hernia repair when she was just 3 pounds in the NICU.  We are going to keep this appointment and talk with him about her growth.  We'd also like to know more about the surgery and the g tube.

We want to get some answers so we can make an informed decision.  We just want to do what is right for our little girl.

1 comment:

  1. Man..that is rough! Hoping and praying you get the answers you need. I can't imagine being blindsided like that.