Sunday, July 12, 2015

Hirschsprung's Disease and a Barium Enema.. #66

We had a follow up with our GI doctor on Thursday the 9th and it didn't go as planned. Back in April/May when Isaac was having issues, which included 2 hospital stays, one of the surgeons on our team suggested we redo a barium enema. He has done well overall but there have been some things and symptoms that we have not been able to pinpoint why they happen or for what reason. He has had 2 Barium Enema's before. One was when he was 2 days old, which they used to diagnose him, and they other was when he was about 3 months old. Both of which I talked about in my prior blog posts. 

A Barium Enema is a contrast dye study to show the full spectrum of the colon (large intestine). They give him an enema with water soluible dye in it which highlights the entire colon and then they take pictures of it. The solution basically dilates or inflates the colon so any abnormalities can be seen. The whole process takes about an hour. They also see how fast he passes the solution out. That will also tell us a lot about his evacuation process. 

Both BE's (Barium Enema) were not fun AT ALL. He was also very young and not able to understand what was going on. I am hoping and praying since he is older, it will go smoother. They both were a complete nightmare. Lots of screaming, red face crying, plus hyperventilating. 

In the appointment with his GI doctor we were discussing potty training. Which we started with Isaac recently. He is going on his own, at least twice a day, and has all the normal habits in a kid without Hirschsprung's. He can feel when he needs to go, etc which is really, really good news. On the flip side and the reason for the repeat BE, is sometimes Isaac's stool looks like a ribbon. So when I told our GI this, he consulted with our surgeon right away. They share a clinic so it's really convenient. I guess ribbon like stool can mean there could be a narrowing somewhere in his colon, amongst other things. Not good. The BE is to rule out any structural abnormalities in his colon. His primary surgeon felt a couple months ago when the other surgeon ordered the BE that it was not warranted at that point. Mainly because he already had a repeat BE (yes 3 years ago but results were normal) and all the other dozens of xrays and procedures have shown nothing. But I guess now that I am able to see the way his stool looks in the toilet vs a diaper, ribbon like stool is never good. Super disappointing and scary. I'm not sure what the outcome will be. He could have a narrowing in there somewhere which could be treated a number of ways.. Trying to stretch it under anesthesia,  doing botox to relax the area, even the possibility of another or redo surgery to correct it. All those outcomes mean more things Isaac will have to go through. 

Obviously we are hoping for a normal result. But the fear of the unknown is really really scary. I am glad we are moving on with this test so we can know for sure one way or another. But I hate having to put him through another traumatic experience. He has done really well so I am confident if anything is wrong, it will be an easy issue to address. I hope. And I pray for.
His test is scheduled for tomorrow, Monday July 13th at 9am. Please join us in saying a prayer or offering some kind of well wish to him. Thank you all!

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