Update From Shands appointment on Feb 17

Things have been crazy so I am just now getting to update you all on her check-ups last week in Gainsville. We were going down for a quarterly appointment with CF center and then a check-up with GI for all of these tummy-troubles.

I just have to say that we love the Dr's @ Shands. I have never had a Dr spend so much time with me in all my life. Her GI Dr was so knowledgeable and spent over an hour in the room with us!!

Her weight was OK, about the same. I told them all about the horrible tummy pains, poopies, bloated tummy and grease.

Dr. H said that he believes it could be one of 3 things:

1. C-Difficile has come back
2. Narrowing of the bowel
3. Cholangitis

He believes it's the #3 option. Cholangitis is something that people get as a complication of the liver surgery Ayla had 2 years ago. About 70% of all people who have a Kasai procedure get Cholangitis. Symptoms from this can be: fever, vomiting, bloating, loss of appetite, pain, and diarrhea. A lot of which Ayla has had.

The good news is the treatment for this is minimal, a prophylactic (septra) daily and another antibiotic when she needs it for flare-ups. The more flare-ups you have the more damage to your liver so we need to pin-point this.

As a precaution we are also testing her stool for C-difficile and having an Upper-GI on Monday morning @ Sacred Heart in Sandestin. The upper GI will tell him if there is any narrowing of the bowel in any area. We are praying this is not the case since that could require a surgery to remove narrowed portion.

He went ahead and prescribed the Septra for her last week. He said we would see improvement right away with that if it was indeed the Cholangitis. And we have seen some improvement. The amount of complaining from belly pain has decreased and amount of stools and grease has also.

So we are hoping we have found the problem and the solution. I am still keeping her off dairy as well. Just trying to give her lots of what she likes to get some weight back on her.

The CF center appointment was very boring (yay!) Just said how great she sounds and prescribed an ant-acid and we were on our way!

Please pray for negative test results from C-difficile and Upper GI.

Thanks everyone,