|
Aug. 18, 2009
Happy Dance
I'm doing the happy dance. To be specific, I'm doing the "Dance Happily While PACKING to go HOME" dance. :-) I really, really, really didn't want to stay here any longer, and no one could come up with a reason why we actually HAD to stay - so we are busting out of here! The hold-up would have been making all of the arrangements for the new g-tube feeds, but since he isn't getting any significant amount of fluids or nutrition or anything from the g-tube feeds, we are just going to skip them tonight and get set up for them tomorrow. He's getting less than a tablespoon per hour for 10 hours, and he has a LONG way to go before the feeds would be enough for them to change his TPN recipe. In other words, he is getting everything from TPN and any little g-tube feeds are extra. We don't know if he will get far enough to influence his TPN, but for now it is worth a try.
I was asked about whether Noah might do better with j-tube(direct to intestines) feeds. It is an excellent question. 2 years ago we tried to convert his g-tube to a g-j- tube. It was during that surgery that we learned that something was very wrong with Noah's anatomy, and two days later he had major gut surgery. Many attempts have been made to do a g-j-tube, but Noah apparently has some reverse motility because within 24 hours the j (intestinal) portion of the tube will just back up into his stomach. Noah isn't really a candidate for an actual j-tube (j only) because of his still-abnormal gut anatomy. (Some of you remember Noah being medflighted to CHOP in Philly a couple of years ago. The purpose of that visit was to try anything possible to make some sort of j-tube feeds work so that Noah wouldn't go home on TPN. Obviously, nothing worked.)
Off to finish PACKING!!!!! Please pray for a smooth transition to home.
Blessings,
Kate |
| �
Post A Comment! �
Send to a Friend!
|
Comments
|
|
|
|
Posted by Kathy 
Posted by 
Posted by 
Aug. 18, 2009 - Untitled Comment
I pray that Noah will be able to stay at home with all of you for a long time.
Soli Deo Gloria!