Violet Update - Update post #35

greeneyes · #1 July 14th, 2009, 05:20 PM

Lee and I met with the pedi GI today and despite the shenanigans required to get this appointment, we actually really liked the guy. He was very thorough with us and took his time informing us of all the necessary tests and possible outcomes. At this point in time, he feels Violet probably has Hirschsprung's Disease where her rectum lacks ganglion cells that tell her bowel to relax and allow poop to pass. In conjunction with this, she also has an abnormally small anus which by itself is not concerning but coupled with the Hirschburger's is not helping matters much.

At this point we need to confirm the diagnosis which will require a few more tests. Step one is to perform a barium enema tomorrow where they will inject dye via an enema so they can see the lower intestine. Step two is to perform a rectal biopsy to confirm or deny the lack of ganglion cells in her rectum. If Violet does in fact have Hirschsprung's then we will be undergoing surgery to perform an intestinal pull-through. Basically they will be taking a healthy section of bowel and telescoping it into the unhealthy section so that the unhealthy bowel sheaths over the healthy bowel. This will allow her to properly have bowel movements which in turn will also allow her to better absorb nutrients. One of the biggest reasons why she is not properly gaining weight is because there is so much backed up poop in there her intestines don't have enough open space for nutrient absorption.

As for the high white blood cell count and abnormal liver enzymes, the GI said those results are all symptomatic of a much larger problem. In this case, the constipation is causing irritation and inflammation of surrounding organs one of which is the liver. He believes there is not a secondary issue with the liver and once we correct the chronic constipation the liver issue will also be corrected.

I'm not happy about general anesthesia and surgery but I am relieved we are at least getting somewhere now. I'm really not looking forward to the enema tomorrow. She has to fast for four hours beforehand so she'll be cranky from that and then I've read that enemas for kids with Hirschsprung's are pretty uncomfortable. Poor Vivi.

midnight_starr · #2 July 14th, 2009, 05:27 PM

I feel so awful for her, but I'm glad you guys are getting answers and have a plan worked out.. I will keep Vivi in my T&Ps!! Please KUP!

*kyle* · #3 July 14th, 2009, 05:34 PM

Poor baby girl... I will keep my fingers crossed that she gets through the next couple of procedures with minimal discomfort. I'm glad though that you guys have gotten some idea what's going on, and that there is a good treatment available for it.

Mod-LadyCoconut · #4 July 14th, 2009, 05:43 PM

Wow, the things you don't expect to have to deal with when you have kids. I'm so glad you're getting some answers and there's a 'fix' to this problem. I hope that it's not too uncomfortable along the way. Poor Violet

KellyJ009 · #5 July 14th, 2009, 05:46 PM

Thoughts and prayers for sweet Violet and your family. I am glad you have a plan of action now.

niknok · #6 July 14th, 2009, 06:12 PM

I'm so sorry Kate. I had my personal suspicion that may be her eventual diagnosis. I hope her biopsy and anesthesia go well, and that the enema is as painless as possible!

bittersweet · #7 July 14th, 2009, 06:44 PM

Quote:

Originally Posted by niknok

I'm so sorry Kate. I had my personal suspicion that may be her eventual diagnosis. I hope her biopsy and anesthesia go well, and that the enema is as painless as possible!

Ditto. I hope her surgery goes smoothly. Keep us updated, I'm thinking of her.