Thursday, September 08, 2011

A lot to take in

It has been an interesting last couple of days to say the least. All of his doctors finally got together on Wed morning, his surgeon, his primary GI and 2 other GI doctors that have taken care of him a lot. They all discussed him and what was next, what could be causing the issues and where do we go from here. They finally came to the agreement that his previous roux en y surgery was not causing any issues and that he did not have any mechanical obstructions anywhere in his intestines.

Everyone is pretty much in agreement that it is his small intestines that are just not working right. No matter what the motility test showed. He had one abnormal AD manometry study and 1 normal study so it could be intermittent but right now it is acute. They also decided to do some colonic manometry to see if he was having issues with his colon and could be pushing some stuff backwards. The other opinions were doing an illeostomy to bypass some of his intestines to see if that would help and the idea of an intestinal transplant.
They had a cancellation yesterday so he got to go down to have the colonic manometry placed in surgery. That test ran yesterday afternoon and most of today. It was pretty disgusting, actually...poop everywhere so that was fun. Still waiting on the results of that, probably will get them tomorrow. I am pretty sure it will be normal...he seems to not have a problem with having runny diapers.

Today, one of the GI doctors was also telling me about a child she had in fellowship that had similar issues like Zach and he went on to have an intestinal transplant. So that is a big possiblity. She doesn't think the illeostomy would work, if his small intestine is the problem then it won't help to just attach it to his skin. She is also going to talk with his primary GI about a trial run of cisapride. She said the med used to work wonders for motility issues and they took it off the market because 2 children died while taking it (they had undiagnosed heart issues) but still, scary. He would have to have a full cardiac workup first. But since the medicine is just coming back on the market, they are only doing limited trials and might not be doing it here.
If he did have to have an intestinal transplant they reccomend Pittsburg as the number 1 choice. I have never been there so at least a change of scenery.

They pulled half of his immunolgy labs this morning and are going to pull the other half tomorrow morning. His blood count has taken a huge hit with all the blood they have been taking and so he might have to get another transfusion soon. And she said today that his labs are showing that the TPN is already starting to damage his liver...which is not good at all, he has only been on it since April and it is vital to his survival.
So as you can tell, we have a lot to take in...there is no signs of going home right now, which is fine because going home scares me.  He is still having lots of pain and they can treat it better here. Also they are going to send genetics by to do an assesment on him. This is very helpful, if he has some sort of genetic issue it could change the course of action for eveything. Well I think that is everything for now. Please keep praying for him. He is feeling better right now which is good but even through his good days he is very sick on the inside.

He tries so hard to always feel good and always smile and laugh. He is such a wonderful 2 1/2 year old and has stolen every nurse's heart up here. He has gotten so rotten, but we love him.

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