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.
Tuesday, February 15, 2011
I know it's been so long since I've updated this blog. I hadn't had much internet access until just recently, but I should be more consistent now.
Joshua's doing really well. A month ago during a routine visit, his GI suggested we hold his tube feeds to see just how much he'll eat my mouth. For five days we kept track of everything and logged his caloric intake. He was averaging about 1000 cal/day. For his age that is great! Not to mention he still receives his TPN for 10 hours at night.
So now it's been a month and he's still doing OK. A little upper respiratory virus has slowed him down a bit, but for the most part his still maintaining his weight. His tummy is not nearly as bloated as it has been in the past. Not having to lug his backpack around has been quite the incentive, too. Any steps toward "normal" is so wonderful. I pray this cycle can continue. I continue to keep a watchful eye, not out of pessimism, but rather experience. Our roller coaster ride is far from over and we can't take anything for granted.
So little by little, inch by inch.