Eli's GI system has never been cooperative. But seriously this is just getting ridiculous. When Eli was 1st born we were able to give his meds/feeds by mouth. Then he stopped tolerating so we switched to stomach. Then he again stopped tolerating so we switched to intestines. He has now been struggling with his J meds. We had tried to up his feeds and his body wouldn't handle it. He can handle 44ml/he but not 45ml/hr. He was handling his meds and flushes. Then a few weeks ago he started choking and gagging and not tolerating them. So the doctors had us change things around and experiment with different ways. His choking just keeps getting worse. The GI today has decided that Eli can't handle ANY bolus, not even 3ml's at a time. So now we are supposed to push all meds slowly over 1 hr. So basically load them all up into a 60ml syringe and slowly hand push over 1 hr.
We are running out of options to get medications into his body. It's so frustrating. I hate watching him get worse. It's devestating.
He is also struggling to bounce back from his Atlanta trip. He is constantly tired. He is sleeping 75% of the day if left to his own ways. During the times he is awake and playing he's back to taking frequent breaks and not having as good of control over his body and movements. I keep hoping that he just needs 1 more good night of sleep between him and the Atlanta trip and that he will wake up nice and refreshed in the morning. But so far that's not happening.
He had PT this morning and we were chatting about his development and she is getting concerned. She isn't the concerned type. She has always been laid back to the point sometimes of driving me insane. So that just concerns me even more. So much more information that we need. So many unanswered questions.
I wish life was cut and dry. I wish things were easy.