I’ve been wanting to post an update, but there has been so little to say.
“Fine. The same. Great, actually. Except for that whole not-eating thing.”
The last 10 days have been the slowest yet. We were transferred back to our local hospital to… basically… wait. Just sit and wait. While she was able to swallow thick liquids at her last swallow study, she did not show any actual inclination to do so. She’d take very small amounts from the bottle, and then her epic reflux would kick in and she’d spit it all back out. She went on an NG tube, which puts the stuff straight into her stomach, but continued to have bad reflux. She got an NJ tube, which goes even farther than the stomach, putting the formula/breastmilk straight into her small intestine, with the hopes of avoiding the reflux.
It was with this NJ tube that we were sent closer to home, to give her some time to see if the reflux will improve on its own at all. As for the day-to-day, there’s very little going on. We go, we visit, we snuggle. We do a little occupational therapy for the major oral aversion she’s developed. We do a little physical therapy, since she spends so much of the day in the bassinet. I put some black & white art cards in her bed so she has something to look at. I sing songs and read Goodnight Moon. But mostly, we just hang out. We don’t get many updates each day, and we don’t expect them.
It’s been a week and a half of this… nothing. And, sadly, we have no reason to believe the reflux is improving. Despite the fact that all of her feeds actually bypass her stomach, she still manages to gag and spit up at least once or twice a day.
So, this part may soon come to an end. We will be heading back downtown soon, talking with GI about surgical options like a feeding tube and a tightening of the stomach around itself to prevent reflux. Not exactly the kind of excitement I was hoping for to kick us out of these doldrums. But, on the positive side, at least it’s action, and it should be action that will ultimately get her home.
One of these days.