Sunday, May 22, 2011

Wednesday, May 18th, 2011

It was one of the few office visits Mommy actually looks forward to - Dysphagia Clinc - and really only because they pay a lot of attention to my weight so Mommy knows for sure we'll get an accurate one.  Sure enough first on the agenda was a height and weight.  The nurse let us know that I weighed in at 27 lbs. 1 oz.  We had a quick chat with the feeding therapist but because I am being followed by Courtney she didn't stay long.  When Marie, the dietician, came in Mommy was anxious to hear how my weight was looking since the last visit.  Today, I had a weight index of 91% and last time it was 87% - since the goal is to be between 90 and 110% I was officially on the boards!  Just to make sure she knew what my magic formula was to figure out my calories she asked Mommy the ratio of water to soy milk I am getting each day.  Since Daddy makes up my formula every night, Mommy threw out some numbers that apparently weren't quite right.  So Grandma called Daddy at work and he helped even more with comments like "I pour the soy milk to the second line in the bottle".  Mommy promised to call Marie back later with the true ratio since it was clear Team Peyton were apparently not numbers people.

A short time later, Dr O'Gorman came in just as I was taking a few photos with Mommy's iPhone.  I snapped af ew of her as well and as Mommy and the doctor tried to catch up, Grandma Glenda tried to keep me quiet.  I hadn't had my nap and was raring to go!  It's a little ironic that just a year ago Mommy was trying to encourage me to talk and now she spends just as much time shushing me!

First off, Mommy let the doctor know that with strict feeding times I can keep my button from sucking in.  However, surgeries are a problem because as soon as the Pedialyte is stopped all bets are off.  Dr O'Gormon confirmed with Mommy that we had done an xray of my belly and a bigger size button and nothing had helped.  At this point with my jaw distraction behind me, she wants to send me on to Dr Downey - a pediatric surgeon - for a consult to discuss moving the button to where it probably should be.  Mommy knows there is no guarantees with surgery, but she did ask, "What are the chances moving the button will prevent the issues Peyton has been having."  The doctor said I am the only child she has ever seen with that placement and also the only child who has ever had the sucking in problem.  Since she has seen a lot of children she has every reason to believe that is what is causing the problem and that moving it will solve it.  Luckily, the surgery is pretty minor and would probably be outpatient or a 24 hour observation at the most.  You can see in the photos above the top one is my button - just right of midline.  The next photo down is the placement most kids have - left of midline.  Apparently a few inches can make a big difference!

Mommy and the doctor talked a little about oral eating.  Since I have been focusing more on speech because of preschool and less on the eating aspect, Mommy wasn't sure if there was a "window of opportunity" for a child to go from a tube feeder to an oral feeder.  Dr O'Gorman said it really doesn't work like that and just because I don't get a tube out in the next few years doesn't mean I won't ever get it out.  She also agreed with Mommy that although intensive feeding programs could benefit some children, I was probably not a good candidate because me eating issues are less behavioral in nature and more structural.

Before the end of the appointment Mommy shared with the doctor the troubling signs of potential reflux Courtney had seen a few weeks ago and Dr O'Gorman suggested that at the time the tube was moved they would do a scope and a Ph probe and if I was demonstrating reflux they would also do the Nissen procedure to prevent further reflux.  In addition, they could coordinate with the ENT folks to have their scope of my airway done at the same time to see if there were any other issues (like granulation tissue) to be aware of for possible decannulation in the future. 

Mommy is certainly not jumping for joy at the thought of another surgery but my tube placement has long been a source of confusion and frustration and getting it moved now before it potentially causes more issues might not be a bad idea.

Peyton Nicole Smith

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