4th Birthday Photo Session

4th Birthday Photo Session

Thursday, March 24, 2011

Telling It Like It Is...

Let's be honest and frank, and seriously cut to the chase... Dr's don't know sh*t about sh*t.  It's deductive reasoning, and narrowing down the options.  Love you dearly, but $1500. to ascertain that Andi's g-tube leaks abnormal amounts.  Really?  I'd much rather gone to Hawaii with that credit and enjoyed life.

gastric emptying test = normal, although noticed leak
upper G.I. = normal, although noticed leak
ultrasound = normal, all seems to be functioning

Her electrolytes are off slightly, as is her urine output... which suggests, slight dehydration.  Yesterday we countered with some pedialyte via a 2-hour bolus.  Today, we counter with additional formula.  As the hydration value between the two is about the same, although the formula offers more calories, and we're all about calories.  To quote Dolly Parton in Steel Magnolias, "calories, calories!" 

The g-tube surgeon came in and evaluated the leak.  I showed him the pouch collecting a nice volume, and he agreed, 'that just isn't right.'  ("Really?")  During a feed, he pulled up on the button like you pull up a stopper in a bathroom sink.  It stopped the leak.  He released the button, and the leak continued to ooze out from around the g-tube.  His suggestion was to mimic his pulling the button upright, and we do that with gauze or rather, split 2x2's.

We're in a wait and see overnight mode to see if this solution works.  Will she be dry?  We've also increased her feed volume, to shovel more food in her and hopefully counter the dehydration.  We're doing labs tomorrow...ewh. I've asked either our night nurse do it, or Panda.  I also suggested calling over to the NICU, as they are the masters and once told me that if we ever need help... to call them for tough blood draws.

The options on the table if this doesn't work aren't appealing. So unappealing that I won't even type them out.  The only appealing thing is pulling the tube and letting it close up, the only problem with that is insuring she gets enough calories to get her weight up.   The question is, what method will we use to do that... and again, the options aren't all that great. 

Tomorrow will tell a lot.  Hopefully we can come up with a game plan.  But as it appears now, we've just spent $1500. to determine that her button needs several more layers of friggen gauze shoved up underneath it, to prevent it from leaking like it shouldn't.  It's late and we're beyond tired, beyond frustrated, so let's just hope we can fix this major non-physical failure and get back onto the weight charts.  Hopefully they'll come to us and tell it like it is, and offer real solutions... because honestly, we've had our fill, and then some.

1 comment:

  1. geez, i looked back at the milk volcano video - that is a lot of leakage! im assuming that you guys already have the biggest g-tube button already? we had to up-size m's from a 14 to a 16 due to her leakage. the other thing, which im sure you probably hate the idea of, would be going back to an naso-gastric feeding tube...
    sorry if im being redundant and all these things have been done or discussed...i just feel for you guys, and know the challenges you're facing...
    continued prayers,