Please pray for Everest.
Everest Update from his mother.
I’m here right now because his nurses informed me he’s been having trouble with bowels and tummy bleeding again. This time there was blood in his NG tube (the tube that goes through his nose to his belly that he gets breastmilk through). They said they’re afraid he’s developing something called Necrotizing Enterocolitis. He does have some blood in his stomach and bowels. They’ve decided not to feed him anything until he receives a transplant. He will only ever get TPN & Lipids (IV nutrition and fats).
They’ve started antibiotics to reduce the infection risks because she said he’s the highest of high at risk. He just got a blood transfusion and she said the bleeding should stop with the feedings being stopped. Basically what Nec can do is it’ll start causing parts of the bowels to die or it’ll cause a lot of scar tissue to build up. We don’t want that because he would need surgery to remove those parts. Which would kick him off of the Heart Transplant list again. As of right now they’ve caught it and treated it so aggressively that they expect it to be just fine within a few days and for the bleeding to stop!
However, the downside with stopping the breastmilk completely and going to full IV nutrition is that he’s at risk for liver and gallbladder complications to arise again. She’s not sure that it will, because his levels look fine now, but it’s a good possibility. So instead of being on regular bloodwork schedule, he’s having it drawn every single morning
sometimes twice a day. They’re watching his liver enzymes and other factors very closely.
He’s a very sicky boy though, he’s sedated pretty heavily because he’s just not been comfortable today without it.