Tuesday, October 28th, 2008

Two busy days in a row. As of 5 am this morning I wasn't allowed anything else to eat until my swallow study this afternoon. By 10:30 when we arrived for check in I was getting to be a hungry girl. After about 1/2 hour of working out the details on what the doctor wanted and how to accomplish it - the decision was made to try giving me a few cc's by mouth to check out my swallow and then a big bolus feed by g tube to check out my reflux and motility. This required the radiologists laying me down on the xray table (at that point I knew I wasn't going to like this), taping my legs together so I couldn't kick and putting something over my body that made me feel very scared because it was so close to me (kind of like going a CAT scan machine). Then Mommy squirted some barium into my mouth from my syringe. That calmed me down for a minute because I was so hungry and really wanted to eat something! After a few cc's were in and a got a few good swallows the crying started up again though! The radiologist then put 60's cc's of barium in my g tube in just a few seconds. A few minutes later he followed it up with 30 more cc's. So within just 5 minutes or so, I had 90 cc's in my belly. Since the maximum I have gotten in the last year has been 45 cc's in an hour - this was a good test of how I would do on a bolus feed, espescially since I didn't take my reflux meds this morning. After about 20 minutes of watching to see how fast my tummy would empty, Mommy was able to pick me up. Then, every 1/2 hour for the next few hours we would have to come back for another xray. I certainly knew the drill and so Mommy had to hold down my arms and Lucille would have to hold down my legs. When it was all over and the radiologist verified things were moving through my system we were able to leave. They told Mommy that the barium is transiting through my system as it should so no motility issues. There wasn't any barium detected in my lungs while swallowing so no aspiration. (However, Mommy did notice a little coming out my trach so it is still going where it shouldn't but I am coughing it up before it reaches my lungs). There was a little reflux but nothing serious so that seems to have improved as well. At this point, I am all clear to try bolus feedings as far as the radiologist is concerned. He will send the results on to my GI and then Mommy and her will devise a plan for moving me off of continuous feedings during the day.

After such a long appointment, I gladly fell asleep on the car ride home while getting my afternoon feeding. At 3, it was time for my IFSP meeting with my OT, hard of hearing teacher, special education teacher and the coordinator for the regional center. Mommy talked with them about how I am doing and the goals for the coming year. I was a little disappointed that so many of them showed up but none of them played with me. I kept trying to get their attention too by demonstrating how well I can wash the floor with my wipies but to no avail. They said they will all come back soon to play with me though.

Peyton Nicole Smith