Just when we think Christopher has a fighting chance (his color is good, labs are good, tummy not distended, etc), we were admitted to UCSF on Monday to have an NG tube placed in Chris’ nose. Even though Chris eats more than Evan, apparently, he hasn’t gained weight in a month and his doctors are concerned this puts him at a developmental disadvantage as well as an almost last-ditch effort before the transplant talk. Their solution: to night feed him and see what his liver does with all that volume.
The worse part of it all is that when Chris pulls his tube out of his nose, I have to put it back. What a horrible task to but it must be done with the utmost love. He pulled it twice already and I can say, he puts up a really good fight!
As of last Thurs., Chris has gained 4oz. in a week so it looks promising. But, as his nurse said, “It’s a marathon, not a sprint”. Chris-Chris is keeping everyone on their toes! I’m trying to look at the glass half-full but that glass is looking slightly less full. Day by day…
