Taylor took her formula through the tube this morning and ate 60% of her breakfast. Mom arrived a little while later with my latte and banana bread...thanks again! Taylor was pretty zoned out again this morning so Mom had a good long cuddle with her peanut, and I jumped in the shower.
When the team came to do rounds, the plan was pretty straightforward...continue feeding Taylor her solids, hope that she starts doing better with the bottle, and maybe we could take the tube out tomorrow and push her a little harder.
Then OT came...and the plan went kinda sideways! We tried the bottle first. Taylor only took a few swallows and "spilled" a bunch out of the sides of her mouth. She turned away from it after that, so we moved onto the food. She ate willingly, and ate 99% of it. But the OT heard something that she didn't like. Once Taylor started eating, we could hear a faint gurling sound in her throat as she breathed. And she had a few coughs, like you would do when clearing your throat. There is a flap that closes over the airway when you swallow so that the food doesn't go down the airway and into your lungs. When you finish swallowing the flap opens again for breathing. The OT is concerned that even though Taylor is swallowing her food nicely, some of it is lingering there where the flap is.That puts her at good risk of aspirating...breathing in those food particles (or liquids) when the airway is open.
So...her recommendation is to do a video swallow study. Same one she had about 15 months ago, they put barium in her food and formula and she eats and drinks behind an x-ray. It shows the passage of food from the mouth through the throat, and into the esophagus. The study specifically looks for signs of aspiration, which can be seen as barium entering the windpipe.
We could do this as an outpatient, however there would be about a 4 week wait. If Taylor remains an inpatient, she can have the study done on Tuesday. So that's what we're going to do. The sooner we find out for sure, the better.
So, we're residing at Children's until at least then. The OT is also proposing that we only offer her 2 meals instead of her usual 3. And only offer her 2 bottles instead of her usual 5, having the other 3 go in the tube. She feels that we don't want to stop feeding Taylor and risk having her not take anything orally by the time the study happens, and at the same time we don't want to offer her so much orally that we add to the potential problem. So that's the new plan, cut out one meal and only offer her formula by bottle a couple times a day. The formula is going to be beefed up so that it has added calories to make up for the meal that she is missing.
Aside from the feeding, Taylor has really come around. She was pretty spaced out for a while this morning, but started to perk up at around 11am. Kicking and moving around the crib the way she normally would, and making some of her usual vocalizations. Unfortunately, Taylor getting back to her more normal self means that she doesn't really want to be held, she just wants to move around. I think I'll have them bring a mat in tomorrow so that she can roll around on the floor. Our hours of cuddling may be over, which makes me a little sad, but I'm happy that she's getting back on track.
Had another visitor tonight, Aiden's mom Linda, who we know from Pace. That was a nice surprise. They have gone through many of the same issues, tests, hospital stays, etc. What she said is so true, with these guys, we just take it one day at a time cause you never know what's coming. It was nice to see you Linda, thanks for making the drive all the way up here to see us, and for the lovely gift for Taylor, you really shouldn't have.
The OT is coming back in the morning to have another listen as Taylor has breakfast. We'll see what tomorrow has in store for us!
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