Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, March 24, 2014

GI Follow Up

Today Meagan went to see Dr. B again for her GI follow up.  There was a lot to discuss! We arrived bright and early and big sister Maura was there with us for support.

Maura showing Meagan all the fun bears on the paper

We checked in and got a new weight and height - 20 pounds and 32 1/2 inches.  A big drop in weight and no change in height. This puts her weight now at .01% from being up to the 4%,  her length at .02% from being at the 13%, and her weight for length now completely off the charts after it had been following a curve close to the 1% finally - a huge change downward from last Fall. Last Fall she was "holding steady" finally at 19 pounds, so we had all expected a lot more weight gain than what we have now.  She was at 21 pounds 10 ounces last month but for some reason dropped off of that with no explanation of calories or height difference.  In other news, her head circumference is 44.5cm, which has also stagnated quite a bit in the last year putting her head circumference in the 1% for her age. You may think "hey this is good for a hydro kid"... well yes and no.  Even though we are delighted her head size has come down, going too much the other way is also not good.  The head/skull should still grow even at a slower rate, but, we have seen this also stop.   This is something Dr. R is watching because of her bone fusion so we will see what they say about that when she sees him in April.  

Waiting for Dr. B - silly girl


Because of Meagan's weight dropping by a pound and her height stagnating over the last few months, Dr. B said we need to change her feeding plan so we don't see a stall in development at this point.  Dr. B pulled out her growth charts since she has had her gtube and there is a nice sharp rise visit after visit, but this time, both her weight and height have dropped off the curve again.  He said he wouldn't be as concerned if she had grown a lot in height and her weight was delayed, but being that they have both dropped he wants to try and add more feeds.  He also wants us to limit her oral intake to a certain amount of minutes during the day to see if that helps preserve some more calories.  We are supposed to do this new regiment for two months and come back for a re-check.  If she has progressed we will stay this course of increased tube feeds and oral feeding for only "x" minutes at a time.  If she hasn't progressed then we will move on to plan B which will be to take blood work to check growth horomones/pituitary function..etc.

Charts for weight and length - completely fallen off again.

Today Dr. B also said it was time for Meagan to get a new button.  Basically, the gtube has a balloon at the end which is inserted into the stomach and this balloon can go bad over time and burst.  It can happen at any time, but, generally it should be ok for "x" number of months.  Every "x" number of months, we are to change out her g-button so it stays as "fresh" as possible to minimize the risk of an emergent burst/reinsertion. He said he would write a quick order and we could go wait for him to change out her tube and show us how to do it so we can continue to do so at home.

 We went down to first floor to the endoscopy clinic and signed in.  Not long after Dr. B came down with a new button set.  Of course Meagan saw the gloves, the hospital bed, and the white sheets and started freaking out.  Luckily, Maura was with us so she jumped right on the bed with Meagan and helped calm her down.  Dr. B was then able to do the button change with minimal fidgeting from Meagan ... a lot of screaming, but minimal fidgeting.  Wasting no time, Maura jumped right up on the bed with her and made silly faces to cheer her up and Meagan was as good as new.  Just like Corduroy the bear with a brand new shiny button :)

Waiting for Dr. B in Endoscopy Clinic

Maura distracting Megs by tackling her on the hospital bed

Meagan getting her button changed - don't worry, it wasn't hurting her!! 
She just does not like to be held down at all! Can't blame her!

A minute later - all better because of big sister's crazy antics

Overall a great appointment with Dr. B.  So lucky to have such wonderful specialists on top of Meagan's care and making sure we are taking her in the right direction to do the best by her health and nutrition.  We gathered up Meagan's tube supplies, a new prescription from Dr. B and made our way to the door.  As we left Meagan screamed "BYEEEEE!!! SEEE YA!!!!!"  Yep, I think she was ready to get home! Oh, and how could I forget! An added bonus to her day? On the way out Meagan got to see her BFF Claire who was there for an appointment as well! Of course it didn't dawn on me to take a picture, but Megs was sure to ask Claire for a Cinderella playdate very soon.

 Loves to sport her cute button cover  

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