Well we made it through one more test today. Josh had an upper GI Barium Series done. He did as good as can be expected. They got him to drink enough by mouth to get the esophogus part done and then put the rest through the tube. The only thing I know for sure is that his reflux is worse than we thought. The Radiologist did part of the test with his NG tube in place and then part with it out of place. He refluxed every time with the tube in place and half the time with it out. So I thought we were probably going to be able to ween him off the meds and now I find out he is not getting any better as far as the reflux is concerned. Even though we don't see anything coming out of his mouth, it is still causing some pain. So that is probably some of the reason he isn't sleeping well. Sigh.... what else is new, huh?
The hardest part was that we ended up having to take his tube totally out and rip all the tape off and replace it on the other side of his face. He was so traumatized by that, it was unreal. I feel so bad for him, it just makes me sad. But he seemed none the worse for wear tonight and was acting fine. So we'll see how well things go when we go back on wednesday for his Neurology appt. He is really starting to hate PCMC. Poor guy!
But while there I was able to have a little time to go see a friend I have met through my 'thru the tulips' blog. Her little guy is currently at PCMC and I actually met her face to face at the Radiology dept last month. So it was great to see her and I hope to have time to see them again on wednesday. At least it gives me a highlight to having to go back to PCMC this week. Thanks Jessica!
1 week ago