Last night and early this morning, Lewis pulled out his naso-gastric feeding tube. Twice. Apparently he was feisty and wide awake overnight. The overnight nurse told us that he was pretty upset and that he'd "figured out the game" - crying until someone picks him up. Then he slept all day, deeply. Including when we visited. He slept through speech therapy at noon. We tried changing his diaper, changing his outfit, tickling his feet, even washing his face with a cool washcloth. He just wouldn't wake up for us. I'm sure he's wide awake now...
Feeding - Lewis lost about 40g (~1.5 oz) at last night's weigh in. They've upped his milk to 28 ml/h and are still adding calories to help him maintain his weight. Still waiting on the consult from the pediatric surgeon about the Nissen surgery - seems more like a "when" than an "if" decision, at this point.
Speech - slow progress, especially since Lewis slept through the whole thing. Even sleeping, he will suck on a finger or pacifier intermittently. Still no progress swallowing, as far as we can tell.
The outfit Lewis has on now has little mittens over his fingers to keep him from yanking on his feeding tube, so hopefully tonight will be a little more peaceful. We're again concerned about the slow pace of progress, but at least we seem to be moving in the right direction.
Dear Josh and Jen and sweet family,
ReplyDeleteI am tickled by Lewis' learning about the world -- how to get picked up, how to pull out that pesky NG tube, etc.
Your blog is really helpful. I'm following it closely and thinking of you so much. What difficult and complicated work this situation requires, and you are doing a wonderful job of staying with it and thinking positively.
Much Love,
Anne
Still keeping in touch and sending positive vibes every single second that I can. Lewis is absolutely adorable.
ReplyDeleteTrish S.