Last Thursday we had an appointment with a cardiac nurse practitioner at the Children's Hospital. As I said in the previous post, Caydence couldn't get in to see her new cardiologist until mid October, so they wanted her to come in and get checked out before then.
The nurse we met with was very nice and took her time with us and checking Caydence over. We voiced our concerns about her feeding tube and so she called up at speech therapist to the room to take a also take a look at her. The speech therapist could tell Caydence was kinda disorganized in her sucking. And after talking for a bit, the nurse and therapist decided to schedule a swallow study for her.
Caydence coughs a lot and gags when she's eating. So the swallow study will check to see that her food is going down the way it should be. Another thought is, that she is gagging and coughing because of her feeding tube.
So this Thursday, we will be going to the hospital for her swallow study and also to get some blood work done since they haven't checked her levels since she was in the NICU.
I am a little concerned though; when the speech therapist called me to set up the appointment Friday, she said that Caydence needs to take about 20 swallows which will equal out to be about an ounce or roughly 30 mLs. This may be a problem since with her tube in Caydence usually only takes about 5 to 10 mLs and in the past 3 to 4 days she hasn't been taking anything by bottle.
So I don't know if they are gonna want us to take her tube out or what. If anything at least, the doctor's will see what a terrible eater she is and enforce them to find a better solution than her NG tube.
Obviously, I don't want Caydence to have to have surgery and have a feeding tube put in her stomach, but she isn't eating with the NG tube in. And when it's out she is eating so so much better! So maybe if she does get the G-tube put in, it will allow her to work on bottling better and she won't have that nasty NG tube taped to her face and going down her throat. I'll let you know how it goes.
Here's a cute pic of Caydence and Daddy: