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Sunday, November 28, 2010

Nolen's GI update

So on the 22nd we went to see the GI Doctors at CHOPS. First off, I absolutely LOVE these doctors. They ROCK! They talked to Nolen (like he could talk back) and they caught a few things that were never mentioned to me before regarding Nolen's time in the hospital.

Apparently, his Liver functioning, nutrition levels and other vital functions were compromised and completely off the charts while in the hospital. I don't know if the doctors purposely neglected to tell me this information or if they choose to omit it for fear I couldn't handle it. (Heck, the only reason I know his actual diagnosis is because I stayed in the "circle" during rounds and heard them say he had it.) Needless to say, this omission caused me NOT to mention it to my doctor, and because the hospital has yet to share records with Nolen's Pediatrician, tests have not been repeated to insure that things have normalized. I will be correcting this ASAP (Monday). Those of you who know my husband can only imagine how livid he is about this neglect.

Things we learned-
-Nolen does have blood in his stool.
-He isn't Gaining like he should
-More than likely, his choking is related to reflux
-He has an overgrowth of yeast.

What we are doing-
-I am going on a no-dairy/no-soy diet to see if the diarrhea is related to an allergy. (Soy and Milk are exposure allergies, and this is the more unlikely of the causes but the easiest and least invasive means of eliminating a potential cause).

-He is being treated both orally and topically for the yeast

-He is getting fortified breastmilk (breastmilk plus powdered formula) in the hopes that more calories/ounce will help him make up the difference without using the tube.

-His Zantac was upped to 3xday/1.2ml...more on this later

-Testing his stool for infection (the most likely cause of his Diarrhea)

We go back in Jan. and if his choking doesn't improve we will do a barium suck swallow test as well as put him on medication for his secretions and possible put the tube back in due to the fear of aspiration (where you end up getting fluid in your lungs and developing pneumonia).
That amount of Zantac was causing Nolen to be excessively sleepy and less interested in eating so I have since had to stop that amount. His choking has returned to the severity prior to this.

4 comments:

welcome to our wonderland said...

poor little guy. I hope he gets better soon

I know when my nephew was on that for reflux but it ended up being an obstructed bowel he slept lots.

Hope and pray Nolen gets better soon

Brandie said...

They have decided to try a different drug (and unfortunately for me it's one that i will have to write down to remember). They haven't confirmed it's reflux, so I am hoping that when we go back in Jan we can have an actual test done to confirm it.

Brandie said...

They have decided to try a different drug (and unfortunately for me it's one that i will have to write down to remember). They haven't confirmed it's reflux, so I am hoping that when we go back in Jan we can have an actual test done to confirm it.

Laura said...

Here's a post on dealing with Thrush that might help:

http://www.passionatehomemaking.com/?s=thrush&submit=Search

While it seems like Nolen's situation is WAY more complicated than thrush, I thought that post might be valuable to you in some way.

I have an adult friend who just diagnosed herself (after horrible doctor neglect) with a yeast build-up, and she is actually feeling better after a detox from all sugars. She had been sick for over a year, so it's huge that a dietary change is helping. Giving up the dairy/soy might help, but it might also be worth giving up sugar. How to do both? That's hard. You'd only be left with meats, nuts, veggies, and the like.

Hoping for the best!