Easter pictures 2011

Monday, April 11, 2011

What are we waiting on?

The situation: 
Her former pedi said about 2 months of not using the tube and we'd evaluate her weight then. 

Her GI said 3 months of not using the tube and that she needed all measurements to be between the 5th-10th percentile or better.  If you do the average of the three (weight, height and hc), she'd be at about the 25th percentile overall.  

Her Occupational Therapist gave us the go-ahead a month ago.

 I'm taking her to her new pedi today to get her take on things.  We'd seen this doctor (Dr. Atchison) before (when Reide was 10mo) and she was the FIRST one to be aggressive with Reide's reflux.  She understood retching, she understood the lingo we were using and she GOT IT.  So, we're going back to her, for good.  The only thing "outstanding" as far a we're concerned, is if Reide does or does not have a pancreatic enzyme insufficiency (which may be affecting her breakdown and subsequent absorption of food).  Her stool study for this condition is in-progress and will take 10 days to get the results.

Our argument:

We began Reide's wean December 18, 2010 and she's been doing wonderfully!  She's down to the 3rd percentile (from the 8th) but is staying on her height curve (25th) and is staying on her head circumference curve (95th).  She eats all the time and eats a decent variety.  The relationship between her and food is still developing and improving but will take some time.  We've not used her tube for anything (not for meds, food, water, NOTHING) since March 1 and before that, we'd only been using it for only meds for a month because it was convenient.   We're READY for the Tube-pulling Party!  While overall, her weight is still waxing and waning, she's not going to quit eating and we're not going to tube feed her....that's the bottom line.  So what are we waiting on???

From all my years managing a pediatric practice, I've seen MANY, MANY children small like Reide and NONE of them have a feeding tube.  Actually, when I started to dig into some of their medical records, their diet, growth, development weren't even discussed or documented.  It's crazy to see that everyone else gets treated like it's "no big deal" but with us, we're made to wait.  What if she had NO TUBE, what if she NEVER HAD A TUBE, what would they say or do????  Half of her doctors were on the fence about whether she NEEDED a feeding tube to BEGIN WITH!!!!  ARGH ARGH ARGH!

It's a very frustrating place to be.  Are we waiting on someone's permission?  And if so, who's permission are we waiting on?  Is someone going to call CPS if we pull her feeding tube??? IS THIS UP TO US TO DECIDE???  Oh my gosh, so frustrating to think about and even more frustrating to type/write.


Ok, so that's that.  We'll hopefully know a lot more later this afternoon.  On a closing note, I'm really super lame for not posting more often.  I've written blogs in my head once a week but haven't taken the time to actually type them up.  I'm here-by vowing, in writing, in the infinitely public world that is my blog to GET IT TOGETHER!  Haha!  Ok, seriously though....the light bulb is finally back on in my head and now I'm going to start acting like it.

Wishing you all love and light-