Not much change today.
The blood transfusion has perked him up a bit. He definitely has better color and more energy. He's used that energy to stay awake.
He was up until 2:30 am (amazing the nurses) and then only slept until about 9. Then refused to nap all morning.
He finally collapsed about 2 and took what was essentially a 3 hour nap.
Unfortunately he's not eating any better despite the meds.
Our pediatrician was in the morning for a "social visit" (as she called it) and I asked what the plan was.
Basically they want to give him a day or two of meds to see if there is any improvement.
They had him evaluated by OT today. Then from there we'll decide where to go.
The subject of the G tube came up again.
I have very mixed feelings about that. I know he needs nutrition but the thought of a hole in his side really is hard to be too excited about.
But Dr. P did make me feel a bit better. She gave a good pep talk about how much better it is for him and how much worse things could be.
They may want to do a scope to look at his innards before that as well. (Which would make me more comfortable as well. Let's rule everything else out before we go sticking a plug in him.)
OT came and pretty much said the same thing that our home OT has said. "He has great oral motor skills." Basically he doesn't have any negative oral issues and can eat- he just won't. Something happens where he starts eating, gets going great and then just boom! stops. No one knows why. Everyone assumes that SOMETHING is triggered, but no one knows what the something is.
For now we're really just hanging out and eating every three hours. For the most part he eats about an ounce and they put another ounce into his NG tube. Dr. GI did add a tiny bit of protein rich formula to his breast milk today. No one told me, but I assume that probably relates to the anemia.
Tomorrow OT wants to watch him eat again. He was quite sleepy when they were here today (it was the middle of his 3 hour nap) so they want to see if there are differences when he's awake.
From there, I guess we reevaluate.
Please keep us in your prayers. The best thing that could happen is he just suddenly starts eating.
In the mean time, here are some pictures from yesterday.
Chillin' in my hospital bed.
Takin' it all in.
Daddy snuggles me.
On Mommy's lap in my fancy hospital gown.