Well the results are finally in, and Levi does not have Hirschsprung's. I have to say I'm disappointed, because now we are still facing the unknown. Why can't he poop or pass gas? Why is he so uncomfortable and miserable? The last couple times we used the rectal tube there was hardly anything there, so is his body not even creating stool? What is happening to all the food that enters his body 24 hours a day? WHY did it all start with the g-tube surgery?
I guess the plan at this point is for 24 hour continuous feedings, daily Miralax, and wait. If this doesn't work, maybe we can start motility meds, depending on which GI doctor we talk to. And what kind of time frame are we looking at before we start that? I'm not in the best frame of mind to talk about this right now, so I'll just leave it at that.
On the bright side, Levi seems to be adjusting to home and realizing that he's home. He had therapy with Shawnery today, which started out rocky but she was able to calm him down and work with him. He fell asleep and slept in the new feeder seat for a very long time. We have actually seen a couple smiles from him today! Please keep him in your prayers!
I guess the plan at this point is for 24 hour continuous feedings, daily Miralax, and wait. If this doesn't work, maybe we can start motility meds, depending on which GI doctor we talk to. And what kind of time frame are we looking at before we start that? I'm not in the best frame of mind to talk about this right now, so I'll just leave it at that.
On the bright side, Levi seems to be adjusting to home and realizing that he's home. He had therapy with Shawnery today, which started out rocky but she was able to calm him down and work with him. He fell asleep and slept in the new feeder seat for a very long time. We have actually seen a couple smiles from him today! Please keep him in your prayers!
No comments:
Post a Comment