Developmental Pediatrician Appt. in Memphis

Went to the appointment in Memphis to see a developmental pediatrician on August 29th. Boy o Boy was that a LONG appointment. Nobody told us that is was an 8 hours ordeal before we got there. After gotten there at 7:30 am and signed in then about 8:30 was called back at about 8:45 we were handed that day's schedule. We couldn't believe what all it entailed. It said that if you will not be able to stay until at least 2pm then to let them know and they will reschedule the appointment. That would have been nice to know before driving 3 1/2 hours to get there. Oh well what can you do. Anyways, the appointment was at Le Bonheur Children's Hospital in Memphis. We drove up on Monday afternoon to stay with my Aunt Jennifer who lives 15 minutes outside memphis. Woke up early Tuesday morning and well didn't leave the appointment until 3:30pm. We met with the Developmental pediatrician at 9:15 and kept her in the room discussing EVERYTHING with her for almost 2 hours. In the middle of all that the Speech Pathologist came in to evaluate Aryssa. Then at about 12 the nutritionist came in and met with us. All 3 gave the opinion that they felt that I had a good feeding therapist already working with Aryssa and to keep the therapy going. Then at about 2:45, after all of them had a meeting and discussed all their opinions with each other, the developmental pediatrician came in to discuss it with us. They feel that the ONLY thing holding Aryssa back, is the NG tube. They feel that she needs to get the mic-key button to get rid of the last thing (NG tube) that could be causing her oral aversion. This doctor recommended that Aryssa needs to get Physical therapy due to low muscle tone, which could be causing her to not be able to lift herself up with her arms to band two things together. She also recommended us to a test called Milk Scan. This test is a 24 hour test with Aryssa being off her reflux meds for 5 days to test and see how BAD her reflux is. This test will determine "what" kind of surgery she will need for the mic-key button to be placed. If they feel her reflux is bad then they will preform a surgery called a Nissen Surgery which they basically make a flap to close off the esophagus from the stomach to prevent her from refluxing. If her reflux isn't bad enough in their opinion then they will preform a what the call a Peg Surgery which is very quick and not as invasive as the Nissen surgery which is an "actual" surgery. The Peg surgery is where they put a light down into her stomach and make a tiny incision on the outside to place the G-tube which caused the stomach lining and the wall to bind together so there is no gap. The G tube is placed and is left in for at least 6 weeks for the incision to heal in which once it is healed it is replaced with the mic-key button.

I discussed all of this with Jodi, the feeding therapist, and she is worried about the Nissen surgery. In her experience that can cause more aversion due to it prevents you from being able to throw up, which sometimes can make someone feel better. So once again, now I am more confused and indecisive. We have an appointment on Friday Sep. 11th with our pediatrician to discuss all this and get her take on it all. I will not make a decision until I speak with the GI doc at Le Bonheur and the surgeon. As in the past, I can't always rely on the info from a doctor outside of their speciality. Hopefully it's not as bad as the developmental pediatrician has described. We will see. I will keep everyone informed, hopefully in a more timely manner.... sorry for the gaps in information.