Bentley's barium swallow showed that she does aspirate thin liquid. It also showed a severe stenonis/stricture at her surgical repair site. However, she does not have a leak at the surgical site.
We can solve the aspiration issue by thickening her milk to a honey consistency with simplythick (a thickening product that does not affect the nutritional value of her milk).
Her esophagus looks like a stopped up drain. The stricture is so tight that all of her food hangs out above the repair site or refluxes back up. She is smart though. When she eats she sucks, sucks, sucks, and then takes a nice long pause to allow her throat to drain. Even the OT commented on how smart she was to pick up on her own body's queues to stop and take a break.
The stricture needs surgical attention. The surgeon will have to go in and dilate Bentley's esophagus with a balloon. This will happen either Friday or Monday They will not do the procedure on an infant under the age of 1 month. Bentley turns 1 month on Feb.13th. She will have general anesthesia for this procedure.
Bentley is a "silent aspirator." She only coughs every now and then to let us know there is a problem. We are so glad that the doctor ordered this study and didn't send us out the door. We pretty much had our bags packed and had even said good-bye to some of the staff. It would have been terrible to get home and Bentley develop pneumonia. JUST TERRIBLE!!!
So here were are and here we will be until our little girl is healthy enough to go home with mom and dad. She will definitely need a lot of tender loving care and special attention when she eats. I put a picture up of the wedge and Tucker sling that she will have to sleep in and hang out in until the doctors tell us that her reflux is no longer severe. It could be 6 months, 8 months, less, or more. There is no timeline. It is impossible for us to even begin to predict what it will be like in 4 months let alone tomorrow or when we are going home. She will have follow up with her cardiologist, neonatologist, pediatrician, and surgeon throughout the next few years for all of these issues. And let me assure you they are the BEST at what they do.
We are still SOOOO LUCKY when it comes to Ms.Bentley. Most TE fistulas/esophageal atresia babies go home with gastric tubes and don't eat by mouth for months. Her favorite thing to do is eat and suck her paci:)
She's an absolute angel.
My son had to have his formula thicken to honey also. But now he is almost five and can drink normal with no problems. She will grow out of it with time. I pray that she will grow up to be a very healthly and beautiful girl..
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