James’ feeds have been increased to 55 ml and they put him back on Reglan.
He had the upper GI today and it didn’t show any reflux. The GI doc is going to talk with the NICU team and decide the best route for long term feedings. Stacy thinks G-tube and no fundoplication surgery. I agree with her. The G-tube will allow him to get the NG- and NJ-tubes out of his nose and if he is not refluxing then there is no reason to do the fundoplication.
The reason they did the upper GI test is to see if there are any obstructions or twists in James’ GI tract. This is not a test to see why he is not swallowing. Fortunately, James does not have any obstructions so if he does learn to mouth feed at some point, there won’t be anything that would cause food or formula to go into the lungs or aspirate.
Stacy talked with one of James’ caseworkers to inquire about a swallow study. She said that it is up to the speech language pathologist (SLP) and if they think James would be a good candidate for a swallow study. One of the NICU nurses mentioned to Stacy that in order to be part of a swallow study, the child usually needs to be actively sucking or trying to suck. Because James does not currently know how to suck, he might not be able to participate in a swallow study.
Because they were having so many issues trying to get James’ hearing tested in the NICU, they think it would be better if he sees an audiologist after he is released from the NICU…whenever that may be.
The physical therapist saw James today and gave him a good workout.
James’ night nurse said that he started sating low and they put him back on oxygen at 10:51 pm and did a chest x-ray to check for pneumonia. The x-ray was clear.
Stacy was doing some Internet research and came across something called Moebius Syndrome and thought it sounded like James. A summary provided by rarediseases.org says that “Moebius syndrome is a rare neurological disorder characterized by weakness or paralysis (palsy) of multiple cranial nerves, most often the 6th (abducens) and 7th (facial) nerves. Other cranial nerves are sometimes affected. The disorder is present at birth (congenital). If the 7th nerve is involved, the individual with Moebius syndrome is unable to smile, frown, pucker the lips, raise the eyebrows, or close the eyelids. If the 6th nerve is affected, the eye cannot turn outward past the midline. Other abnormalities include underdevelopment of the pectoral muscles and defects of the limbs. Moebius syndrome is not progressive. The exact cause is unknown. It appears to occur randomly (sporadically) in most cases; however, some cases occur in families suggesting that there may be a genetic component.” There is not a specific test that can be done to diagnose Moebius syndrome. It is diagnosed based upon the characteristic signs/symptoms, a detailed patient history, and a thorough clinical evaluation.
