Some general info

So, Rory is out of the OR and back in her room, she did well. She is not allowed to eat for a while because she had a big upset to her system and they want to make sure the ostomy is working etc etc.

Some general info because a few people have asked...
Basically, what's wrong with Rory is that there is a continuous portion of her large intestine (colon) that goes from the rectum all the way up to where there colon turns and goes across the belly (the descending colon to the splenic flexure) which is missing nerve cells. The portion before this point has normal nerve cells.

What usually happens is that poop moves through the large intestine pushed along by the squeezing motion generated by the walls of the intestine (peristalsis). The area of colon that contains no nerves cannot generate this motion and thus, cannot push the poop along. This means that the rest of the intestine can push the poop until it reaches this nonfunctioning area. This area is like a straw that the rest of the intestine has to try to push the poop through, when it can't the poop will stop moving and the poop behind will start to build up. The colon will stretch to hold it and the poop will continue to back up and the colon will stretch until finally the poop builds up so much that the colon becomes completely obstructed.

This is what happened when Rory was born- she had been building up poop in her intestines before birth and when she started to eat, the poop had nowhere to go. So she stopped eating because her belly was distended and full and she couldn't poop. Ultimately she started throwing up because everything that was the only way for things to come out.

The washes we were doing basically functioned to flush the poop out to prevent her from obstructing again. We hoped that it would be enough to allow her colon to start healing and shrink to normal size. Her nonfunctioning portion was too long to allow this and her colon remained dilated and distended which dictated the two stage surgery.

The surgeries we have ben talking about, primary pull through and the two stage- colostomy then pull through- result in the same thing. The main difference is one surgery versus two. The colostomy is basically taking the area of intestine that is functioning and separating it from the nonfunctioning area. Then taking the end of the working colon and bringing it to an opening in the skin (the ostomy) to allow the poop to flow out unhindered into a bag and thus the functioning colon to start to shrink to normal size and stop being inflamed. After the functioning colon heals, the second stage will be when they remove the nonfunctioning colon and then connect the functioning portion to her bottom (anus).

So, right now, Rory has colostomy, the next surgery will most likely take place within the next four weeks.

Please feel free to ask for clarification or correct any errors we make in our postings if you notice any. We are bleary eyed and this is not an area of expertise for us!

Thank you to all our friends and families for all the love, support, food, company and everything that you have shared with us. We are extremely lucky to have you in our lives.