So a month has past since we discontinued Joshua's tube feedings. All is well. He's still eating quite a bit by mouth and tolerating solid food, for the most part. His tummy looks so much better. Not nearly the bloating that he'd been experiencing. That in itself is a miracle! I NEVER dreamed that he could make it on solid oral feeds alone. I was prepared for him to depend on tube feedings, at least nightly, for the rest of his life. This is still hard to wrap my head around.
Yesterday I received a phone call from the GI's office. Joshua's labs look great and they want to cut back his TPN to Monday, Wednesday, Friday. Really? This is amazing. But, this means Joshua goes under a microscope. He'll need weekly labs, we're monitoring his caloric intake and we closely watch for any signs of dehydration. That's the real booger in all this. We've been down this road unsuccessfully before. Joshua can get so dehydrated so quickly. It's been almost a year since we tried to wean him off TPN and we landed in hospital for about a month.
Please pray specifically that Joshua can handle such a change this time around. It's so difficult for his body to maintain it's fluid levels.