A Little Something Extra

Monday, October 13, 2008

Unbelievable

I have to take Micah back to Milwaukee tomorrow to have his J-tube repositioned... again. After all this backup into his stomach, we decided to head to our local hospital to have the position of the tube checked (it's called a "contrast study"). The tip of his tube is in his duodenum, not his jejunum. The reason he has a J-tube is that his duodenum doesn't work properly. So with all of his food going into that spot, only some of it is actually going through. The rest of his food is backing up to his stomach.

The radiologist who did the study talked with me about the possibility of him someday being able to replace/reposition Micah's tube here so that I don't have to take him to Milwaukee every time. He doesn't do many of these with babies. And the major issue really gets down to the possibility that he would have to be sedated for the procedure and since he's a "cardiac kid," he has to go to Milwaukee for sedation, since that's where the pediatric cardiothoracic anesthesiologists are located. But I really liked this radiologist.

Anyway... by our calculations, the interventional radiology (IR) dept at Children's is batting .500 right now with Micah's tube placement. That's not a stellar record, in my humble opinion. Seriously... his tube was just replaced last Wednesday and it was out of place by Saturday. How does that happen? Anyone out there reading this who has a kid with a J-tube? Please share your experiences.

I really want to share a positive post, especially during this month of Down syndrome awareness. Please pray that we get through all this yucky stuff soon. Micah's weight is dropping since he hasn't gotten enough nutrition now for 2.5 weeks. He's pretty weak. It's getting a bit scary.

4 comments:

Rachel said...

I AM PRAYING EVERY SINGLE DAY FOR SWEET MICAH!!!! Every day!

Rachel

Andrea said...

Wow....unreal.....I can't imagine your anguish. How frustrating that they can't seem to get things taken care of.....prayers for you all....

Kris said...

Unbelievable is right. Oh, I'm just so sorry you are having to head back. You must all be exhausted. We are increasing our prayers for Micah and your whole family....you all need a break from medical facilities! Thank you so much for keeping us updated so we can offer specific prayers for sweet Micah. Get better little guy!

Rena said...

You've been on my mind lately. Keeping you in prayer!